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by Copyright Tracie Culp Harrison 2004 The Dissertation Committee for Tracie Culp Harrison Certifies that this is the approved version of the following dissertation: The Meaning of Aging for Women with Childhood Onset Disabilities Committee: Alexa Stuifbergen, Supervisor Graham McDougall Margaret Nosek Waneen Spirduso Lorraine Walker The Meaning of Aging for Women with Childhood Onset Disabilities by Tracie Culp Harrison, B.S.N; M.S.N. Dissertation Presented to the Faculty of the Graduate School of The University of Texas at Austin in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy The University of Texas at Austin August, 2004 Dedication To my children, Joshua and Lauren with love. Acknowledgements First, I would like to express my appreciation to those who funded this research. This work could not have been done without the support of the John A. Hartford Foundation Building Academic Gerontology Nursing Capacity Scholarship and the Donald D. Harrington Dissertation Fellowship. I would also like to thank those who administered the grants. Claire Fagin, PhD, RN, FAAN and Patty Franklin, MSN, RN who administered the Hartford Scholarship, were supportive, encouraging, and flexible in their work as director and project director for the program. Chris Marcin and Dean Dollard of The University of Texas at Austin Harrington Dissertation Fellowship program represented the University with dignity and pride. Their efforts made me continually aware of the magnitude of the honor I received when awarded the Harrington Fellowship. I would not have been able to do this research without the support I received. I am deeply touched by the generosity and grateful for the support. Second, I would like to acknowledge the support of my advisor, Alexa Stuifbergen, PhD, RN, FAAN. I had no idea of what I was capable of thinking, writing, or becoming before I was her student. I am grateful that she was incredibly knowledgeable and that she was willing to share her knowledge. Not everyone is both. More importantly, she inspired my interest in disability studies with her enthusiasm, encouragement, and positive attitude toward her own research. Being a part of her research team has been one of the best work experiences I have had. v Third, I would like to express my appreciation to my committee. My dissertation committee was comprised of Dr. Nosek, Dr. Spirduso, Dr. Walker and Dr. McDougall. These people are committed and brilliant scientists. I could not imagine doing this work without their guidance and support. First, Dr. Nosek spent considerable time sharing her vast experience as a researcher and a woman with a disability. This work was shaped by many of her insights. Second, I owe my interest in gerontological research to Dr. Spirduso. She was an excellent teacher whose enthusiasm for the care of our aging population was, and still is, unmatched. Next, I owe much of my interest in women's health to Dr. Walker. Through her hard work at The University of Texas at Austin, School of Nursing an Institutional National Research Service Award for the study of underserved women was awarded to the school. This provided many students opportunities for intensive study in women's health issues; fortunately, I was one of those students. Dr. Walker has been an excellent role model for each one of us. Finally, Dr. McDougall has been challenging and intellectually stimulating with his theoretical insight into issues of aging. I appreciated his willingness to share his expertise and time. Fourth, I want to acknowledge all of those who have worked hard to maintain the portfolio programs at The University of Texas at Austin. Dr. Waneen Spirduso and Dr. Gayle Acton have done an excellent job building a multidisciplinary educational program for gerontology students. Not only did I receive excellent research information, but I received the support of a group of internationally known researchers. I would not have received a comparable vi education without the gerontology Institute. I also wish to acknowledge the numerous people involved in the Women's and Gender Studies portfolio programs. The workshops and courses available to me as a portfolio student were challenging and stimulating. Fifth, I would also like to thank all of the professors who took the time to discuss this research with me. Specifically, I would like to thank David L. Kahn, PhD, RN, for his help with the development of the research proposal. I was saddened by his need to resign from the committee prior to the completion of the study. I would also like to thank Benjamin Gregg, PhD for his help with the hermeneutic phenomenology philosophical foundations behind the work. The next group of people I would like to acknowledge is the women who shared so many details of their lives with me. Not only did they help me with this research but they were also very kind to me. Many showed concern for my well being as I traveled many miles across Texas to interview them. I felt like I had made friends. I hope they felt the same. I will always treasure the time I spent with each one of them. Finally, I would like to acknowledge the support of my family. They have frequently provided the inspiration, or kick, to continue, whichever was needed. My children always encouraged me to keep studying. They were always excellent children. When I looked at them I knew I had to keep working because they deserved more than I could give them the day before. Moreover, my parent's enthusiasm for me to finish this work was more than enough to keep me going. My mother made life easier in everyway she could and I appreciate her effort. vii The Meaning of Aging for Women with Childhood Onset Disabilities Publication No._____________ Tracie Culp Harrison, Ph.D. The University of Texas at Austin, 2004 Supervisor: Alexa Stuifbergen The purpose of this study was to gain an understanding of the meaning of aging for women with childhood onset disabilities. It was my aim to explore the life course of women aging with paralytic polio and to convey an account of the changes associated with aging, the strategies used to adapt to the changes, and the affects of gender on their ability to adapt to the changes. Using a hermeneuticphenomenological methodology, 32 women with a history of paralytic polio were interviewed and audio taped 2 to 4 times for 1 to 4 hours at each interview. Of these women, 25 met the criterion needed to understand aging with impairment from childhood. The 25 women whose stories were used in the final analysis were 55 to 65 years old. The majority was Anglo (80%), married (64%), and had children (68%). The mean age of paralytic polio onset was 5.5 years of age. The majority had been diagnosed with post polio syndrome (88%), and was using viii some type of assistive device (88%). A thematic analysis revealed 4 themes regarding the meaning of aging: It's Just Part of Me, Slowing Down, The Particulars of Aging, and the Journey that Changes You. Next, changes associated with aging, consequences of the changes, and strategies used to adapt to the changes were described. Finally, 2 themes emerged to describe how gender influenced their ability to adapt to the changes with aging: Perceptions of Self and Discrepancies in Womanhood. Findings indicated that perceptions of age influenced their reaction to impairment. Their ability to adapt was influenced by their ability to find synchrony between perceptions of self and their ability to act on their behalf. Impairment did not necessarily damage their ability to act on their behalf. Other life circumstances, many of which may be common to women without disabilities, combined with their impairments to influence the meaning of aging. Although the women pushed their bodies to the point of decline to achieve their chosen roles, they valued their achievements in life. Directions for future research and implications for nursing practice were discussed. ix Table of Contents List of Tables......................................................................................................... xv List of Figures ...................................................................................................... xvi List of Figures ...................................................................................................... xvi Chapter 1: Introduction ........................................................................................... 1 Study Purpose................................................................................................. 2 Background .................................................................................................... 3 Sensitizing Framework................................................................................... 9 Definitions.................................................................................................... 15 Assumptions ................................................................................................. 16 Significance to Nursing................................................................................ 17 Chapter 2: Literature Review ................................................................................ 20 The Meaning of Aging ................................................................................. 20 Summary .................................................................................... 27 Studies of Aging Women: Life Course Perspectives ................................... 28 Summary .................................................................................... 31 Studies of Aging with Disability.................................................................. 31 Summary .................................................................................... 38 Studies of Aging with Polio ......................................................................... 39 Studies of Women with Disabilities............................................................. 49 Lives in Time and Place ...................................................................... 50 Human Agency.................................................................................... 55 The Timing of Lives............................................................................ 56 Linked Lives........................................................................................ 57 Summary .................................................................................... 59 Summary ...................................................................................................... 60 x Chapter 3: Methodology........................................................................................ 61 Philosophical Perspective............................................................................. 61 Research Design........................................................................................... 67 Methods........................................................................................................ 69 Participant Selection Strategies ........................................................... 69 Sample Selection ........................................................................ 69 Sample Size ................................................................................ 71 Sample Characteristics ............................................................... 72 Recruitment ................................................................................ 77 Human Subjects.......................................................................... 79 Data Management Strategies............................................................... 80 Data Collection........................................................................... 81 Data Analysis ............................................................................. 83 Researcher Bias ................................................................................... 86 Study Limitations ................................................................................ 86 Summary ............................................................................................. 87 FINDINGS 89 Chapter 4: The Life Course ................................................................................... 89 Childhood 1939/1949 to 1951/1961.......................................................... 91 A Different Time and Place ................................................................ 91 Feeling Peculiar: Getting Polio ........................................................... 92 The Initial Treatment for Polio................................................... 93 The Long Term Treatment for Polio .......................................... 96 Living with the Altered Body............................................................ 100 The Altered Body ..................................................................... 101 The Altered Childhood Experience.......................................... 102 How Families Shape their Children .................................................. 104 Family Sacrifice ....................................................................... 104 xi Parental Presence...................................................................... 106 There Are Things Worse Than Polio ................................................ 108 Adolescence 1952/1962 to 1961/1971 .................................................... 111 Events that Changed a Time and Place ............................................. 111 Conscious of the Body's Improvement ............................................. 114 The Body Improves .................................................................. 114 Losing the Braces ..................................................................... 115 Becoming Conscious of Potential Ability......................................... 116 Knowing and Showing the Body's Limits ........................................ 119 Reminders of Limitations......................................................... 119 Hiding What Can be Hidden .................................................... 120 Finding a Voice in Relationships ...................................................... 122 Young Adulthood 1962/1972 to 1973/1983............................................ 124 Things Needed to Change ................................................................. 124 I Can Achieve.................................................................................... 127 The Nexus of Self, Body, and Sensation.................................. 127 Proving Themselves as Capable............................................... 130 Reinforcing the Will to Achieve .............................................. 131 Pushing the Body to Accommodate the Will to Achieve......... 132 Being Aware of the Bodies Limits .................................................... 133 Noticing the Change................................................................. 134 Addressing the Changes ........................................................... 134 Proving I Can: The Women's Role in Relationships ........................ 137 Marriage: He got a Good Deal, too. Don't You Think? .......... 137 Caring for Children: Feeling the Guilt, Loss, and Reward ...... 140 Middle Adulthood 1974/1984 to 1993/2003 ........................................... 143 With Time the Place Improved ......................................................... 143 Willed to Success but Pushed to Decline .......................................... 147 Achieving Success.................................................................... 147 xii Pushing the Declining Body..................................................... 150 Becoming Conscious of their Bodies' Needs.................................... 155 Responding to their Bodies' Needs................................................... 156 Threats from Increasing Dependency ............................................... 160 Caring for Aging Parents................................................................... 162 Later Adulthood (now) 1994 to 2004...................................................... 164 Expecting More from the Time and Place ........................................ 164 Focusing on the Body........................................................................ 168 Working to Do the Simple Things .................................................... 174 Preserving the Body .......................................................................... 176 Conflicts between Self and Body ...................................................... 180 Relating with the Interdependent Self............................................... 183 Summary .................................................................................................... 188 Chapter 5: Aging, Impairment, and Gender ........................................................ 190 The Meaning of Aging ............................................................................... 190 Aging and Polio: It's Just Part of Me................................................ 191 Impacting the Body's Appearance and Ability ........................ 192 Disrupting Chronological Meaning.......................................... 195 Slowing Down................................................................................... 197 The Particulars of Aging ................................................................... 199 The Individual Aging Body with Polio .................................... 200 The Unpredictability of the Aging Body.................................. 201 The Relativity of Aging............................................................ 202 The Journey that Changes You ......................................................... 202 Summary ........................................................................................... 204 Adjustment to the Changes Associated with Aging................................... 204 Perceptions of Self ............................................................................ 209 My Masculine Ways................................................................. 210 My Feminine Ways .................................................................. 211 xiii The Balanced Self .................................................................... 213 Discrepancies in Womanhood........................................................... 215 Summary ........................................................................................... 219 Chapter 6: Summary, Conclusions, & Recommendations.................................. 220 Summary .................................................................................................... 220 Discussion .................................................................................................. 224 Recommendations for Future Research ..................................................... 235 Recommendations for Healthcare & Public Policy.................................... 239 Recommendations for Healthcare Providers.............................................. 245 Conclusion.................................................................................................. 247 APPENDICES 249 Appendix A: Review Board Materials ................................................................ 250 Institutional Review Board approval.......................................................... 251 Informed consent to participate in research ............................................... 252 Flyer sent to potential participants ............................................................. 257 Card sent to potential participants .............................................................. 258 Letter sent to interested participant ............................................................ 259 Appendix B: Data Collection Instruments .......................................................... 260 Interview Questions.................................................................................... 261 Demographics............................................................................................. 264 Life Course Review Chart.......................................................................... 267 Appendix C: Braces ............................................................................................ 270 Braces Typically Worn by Children with Polio ......................................... 271 References ........................................................................................................... 274 Vita .................................................................................................................... 303 xiv List of Tables Table 1: Table 2: Table 3: Table 4: Table 5: Table 6: Table 7: Pain studies in persons aging with polio. ......................................... 41 Pulmonary changes studied in persons aging with polio. ................ 42 Muscle changes in persons aging with polio.................................... 43 Various studies of decline in persons aging with polio.................... 44 Life Satisfaction studies in persons aging with polio....................... 46 Coping strategies used by persons aging with polio. ....................... 47 Studies of social determinants of health in persons aging with polio.................................................................................................. 48 Table 8: Table 9: Sample characteristics of the 32 participants interviewed. .............. 74 Sample characteristics of the 25 participants included in the analysis. ............................................................................................ 75 Table 11: Table 12: Table 13: Summary of life course themes ........................................................ 90 Changes, consequences, and strategies. ........................................ 207 Secondary changes, consequences, and strategies. ........................ 208 xv List of Figures Figure 1. Life course development for women with childhood onset disability. Adapted from the work of Campbell (1994), Scheer & Luborsky (1991), Wenneberg and Ahlstrom (2000), and Schuster (1993) ...... 14 xvi Chapter 1: Introduction There are 53.9 million Americans with a disability (Jans & Stoddard, 1999); 28.6 million are women and their numbers are increasing (Gerschick, 2000). The increase is partly due to a longer lifespan for persons with disabilities, which is most pronounced among those aging with a disability since childhood (Campbell & Barras, 1999; Campbell, Sheets & Strong, 1999). For example, the average life span has increased for the nearly 700,000 with cerebral palsy and the over 500,000 polio survivors (Campbell, 1998). Regretfully, their increased life span has been accompanied by health and social problems (Campbell; Harrison & Stuifbergen, 2001). Women with disabilities experience high rates of poverty, negative stereotypes, high rates of institutionalization (Frank, 2000) and increased secondary conditions and co-morbidities with aging (Harrison & Stuifbergen, 2001). These problems are costly to the individual, the family, and society. The health risks associated with aging with a disability were behind the U.S. Department of Health and Human Services' decision to include the elimination of health disparities amongst people with disabilities as a 2010 goal, which followed the goal to eliminate disparities associated with gender (U.S. DHHS, 2000). The research available on aging and disability in women has focused primarily upon aging as a process of biological decline. There is little understanding of the lived experience of aging for women who have had disabilities since childhood; despite evidence from nursing, gerontology, 1 sociology, and developmental psychology that aging has physical, psychological, social, and cultural components (Elder, 1994; Moen, Dempster-McClain, & Williams, 1992; Sarvimaki, & Stenbock-Hult, 2000). Women age in complex ways, therefore, it is time to expand the current understanding of aging to include the experiences of women with childhood onset disabilities. When society develops an understanding of the experiences of aging for a group, health care treatment and policy decisions can be tailored appropriately (Torres-Gill, 1992). By understanding the experience of aging, resources that promote opportunities for a high quality of life can be developed to anticipate changes and support women over their life course. If researchers do not understand more than the often inevitable biological decline few culturally appropriate interventions can be designed that help women with disabilities with their daily lives. Moreover, by understanding the psychological, social and cultural, as well as physical demands of aging, preventive steps can be taken that may reduce the problems women with disabilities experience. STUDY PURPOSE The purpose of this study was to explore the meaning of aging for women with childhood onset disabilities. A hermeneutic phenomenological approach was used to guide this qualitative study of women who survived paralytic polio in childhood and were aging into late adulthood. Due to the varied cultural and societal experiences throughout the history of the United States for women of varied ethnicities, Anglo, Hispanic, and African American women were interviewed for their experiences of aging with childhood onset disabilities. 2 Moreover, because perceptions of gender influence awareness of the body and social status, gender was explored as an influence on perceptions of age related changes and subsequent adjustment. The specific aim was to produce a life course description of the meaning of aging developed from the experience of living with a disability since childhood in a cohort of women age 55 to 65 who survived paralytic polio. Within this study it was also the aim of the researcher to: Explore the meaning of the changes women with childhood onset disabilities associated with aging as they entered into later adulthood-- ages 55 to 65. Explore how women with childhood onset disabilities adjusted to the changes they associated with aging. Explore how the women's gender impacted their experience of aging and subsequent adjustment. BACKGROUND This was a study of the experiences of women growing older with impairment related to childhood onset polio. The background for this study included the historical context that influenced the meaning of the women's experiences. This formed the basis for understanding the shared meanings of the group. In order to understand aging for women over the life course the historical and cultural setting for the cohort was explored. Cultural values have shifted over the 20th century in relation to the position of women in society, and that was 3 taken into account. Women now live longer, have more complex roles, and have greater freedom in American society (Giele, 1993). In a review of multiple studies of women and their level of education in American society, Schuster (1993) classified women's lives from the early 1900's to the 1950's as typical of a Vanguard Era because women were only selectively gaining education and few entertained the idea of combining family responsibility and professional employment. The post 1950's period was described by Schuster as the Era of Limitations because women were encouraged to educate themselves but primarily for the purposes of gaining a suitable husband. This was followed by the Era of Transitions, which was typified by women struggling to find meaning in their lives through education and employment. This time period was considered a critical time for social change in American history. The Era of Liberation was described as the time period after 1965 when women began to enter the work force with multiple professional opportunities, but with new social stressors (Schuster, 1993). The changes within the social context were significant when studying the lives of women aging with the effects of paralytic polio. Poliomyelitis is a very old disease; although the height of its impact on Western societies was during the first half of the 20th century. Poliomyelitis could be traced back as far as the Egyptian remains of a mummy found in 3700 B.C. (Mitchell, 1900). Heine reported the first clear description of the disease in 1840 (Frost, 1911), and in 1841 an epidemic was described by Colmer in a group of infants residing in Louisiana (Frost). Sources indicated that the epidemics of poliomyelitis were first recorded in Norway and Sweden (Lavinder, Freeman & 4 Frost, 1918), and in the U.S. from 1909 to 1915, the rate of polio was of endemic proportions; death rates ranging from 5,000 to 12,000 over the entire 6 year period (Lavinder et al.). In the year 1916, things began to change in the U.S.; polio became epidemic in the eastern US and contributed to over 6,000 deaths and 23,000 cases (Lavinder et al.). Afterwards, epidemics of polio sporadically occurred in cities and rural regions in the United States and throughout the world with increasing virulence (Sabin, 1949). Currently, among women with disabilities, polio is one of the most common causes of paralysis; it is second to stroke (LeCompte, 1997). Poliorelated paralysis could range from minor muscle weakness to total paralysis requiring ventilatory support (Morag & Ogra, 1996). Prior to the use of the poliomyelitis vaccine, approximately 32 of every 100,000 children born in the world suffered permanent disability due to the polio virus (Bart, Foulds, & Patriarca, 1996). In 1952, 50,000 people were infected with polio in the United States alone (March of Dimes, 2001b). Today, approximately 640,000 people in the United States have some degree of impairment related to polio; 10 million polio survivors live worldwide (March of Dimes, 2001a). In paralytic polio, the focus of this study, damage is related to cellular destruction. The lesions of destruction occur in the spinal cord, medulla, cerebellum, midbrain, pallidum and/or the motor area of the cerebral cortex. All other areas of the cerebral cortex are spared (Morag & Ogra, 1996). Three types of paralytic polio have been described correlating with characteristic patterns of the disease (Morag & Ogra). First, there is pure spinal poliomyelitis that involves 5 tightness, weakness or paralysis of the respiratory muscles without involvement of cranial nerves or vital centers. The largest degree of destruction involves the cervical and thoracic spinal cord segments. Second, pure bulbar poliomyelitis involves the motor cranial nerve nuclei with or without involvement of the vital centers that control things like body temperature and circulation. The third type, bulbospinal poliomyelitis, affects the respiratory centers and the cranial motor nerve nuclei. The symptoms range from increased respiratory rate, inability to cough or sniff to inability to swallow, heart irregularities, flaccid paralysis, pain, incontinence, and decreased blood pressure. This is followed by muscle atrophy due to disuse and denervation. The only treatment is supportive care (Burns, Barber, Brady, & Dunn, 1996). Although polio infection is no longer a public health epidemic within the United States, there are reasons to conduct this research with polio survivors. The experience of polio survivors can serve as a model for understanding the experience of aging with a disability (Alexander, 1990). This is the first time in history that people with major disabling conditions have lived from childhood to middle and late adulthood (Campbell, 1998) and the aging of polio survivors is largely responsible for this new phenomenon. Many women who are aging with polio were infected as children, rehabilitated and then lived within the community as productive citizens. The focus of polio treatment was on acute care medical issues and many of the long-term consequences of living with a disability over time were ignored (Kemp & Krause, 1999). The experience of aging with a disability can be understood by analyzing the stories of polio survivors. 6 Polio survivors have described how a disability since childhood has impacted their behaviors and emotions in later life. Research has indicated that polio survivors have made efforts to adapt to new disabilities and environmental problems as they arise (Hansson & Ahlstrom, 1999), and have frequently been able to maintain their self-esteem and quality of life in the face of worsening disability (Currie, Gershkoff, & Cifu, 1993). However, their values related to education, achievement, and inner strength, which have been reported to help them normalize when they were young and forget their disability, have been less useful to them as they seek to cope with failing physical health in older age (Kuehn & Winters, 1994). Many of the difficulties associated with living with a disability since childhood have contributed to having a limited social life, not being able to live independently, unemployment, and a loss of access to the health care system after age 21 (Currie et al.). The life stories of polio survivors can provide evidence of how aging is experienced. Most polio survivors are now in the age range of 40 to 70 years and are likely to enter the health care system at an increased rate as the years pass, which includes acute care settings. Although polio survivors have had on going experiences with health care providers, this has been primarily with rehabilitation professionals who may have a different approach to the care of persons with disabilities than general practitioners (Albrecht, 2001). Nurses in all settings need to be made aware of the rehabilitation needs of persons aging with disabilities. This was supported in an ethnographic study over 3 years with 153 persons with disabilities. From this study, researchers reported two case studies of the 7 experience of how macro-level policies impact the daily lives and care of persons with disabilities. One participant, a 48-year-old male with PPS who was hospitalized with acute respiratory failure, reported that a nurse asked his wife why they would use costly technology to support a person with a disability, such as her husband, who would have little quality of life (Albrecht). The nurse and other acute care providers demonstrated little understanding of polio, the man's quality of life with a disability, how the participant had cared for his impairment over his life course, or what changes were anticipated for persons with disabilities as they aged. The participant did not receive the instruction he wanted for discharge and the health care system did not understand the man's past experiences with polio that shaped his current health care needs. Providers cannot remain ignorant to the way a disease shapes the body, mind, and society. The social reaction to polio was an exemplar of how a disease could have a large and lasting impact upon the health and psychology of people. Recently, I toured a local university museum; the development of the polio vaccine was listed as one of the major social developments of the 1950's. No other disease related achievement was listed during any of the time periods from the 1800's to present. I was struck by the impact this discovery had made. Later, scientists announced that they had developed a means of producing polio in a laboratory setting, I watched as the media reacted with outrage. And when persons infected with West Nile virus developed paralysis, it was immediately described as polio like symptoms, which conveyed the idea of an imminent threat. Although other 8 diseases have resulted in the deaths of far more individuals worldwide, polio has invoked considerable societal response within the United States. Other countries have been less fortunate. It was 30 years after the development of the polio vaccine that the World Health Organization devoted resources and began planning to eliminate polio in developing countries (Shiffman, Beer & Wu, 2002). This was partly due to the realization that people in developing countries were suffering serious impairment related to polio despite being considered more prone to early incremental exposure, which was thought to have decreased their chance of serious paralysis from the virus. It was also partly because developing countries demonstrated they could mount effective vaccine programs to reduce the incidence of the disease (Shiffman, et al.). It was clear; however, that the world had to come to the conclusion that polio deserved attention, not only a national level, but on a world wide level (Shiffman, et al.). Today, polio still causes paralysis in various countries such as India. SENSITIZING FRAMEWORK A framework that integrates symbolic interactionism and the life course paradigm was used for this initial hermeneutic phenomenological study exploring the meaning of aging for women with disabilities. Within the life course paradigm, aging was viewed as a developmental process of changing events and socio-cultural meanings that move across time but within the historical and cultural context of the cohort (Giele & Elder, 1998). The life course paradigm incorporated four distinct areas of social life that when brought together told a story of aging. The four elements, which made up the paradigm, were: 1) lives in 9 time and place, 2) human agency, 3) the timing of lives, and 4) linked lives (Elder, 1994, 1996). These elements, which were based upon the premises of symbolic interactionism, combined to form the life course view of aging. Symbolic interactionism (Blumer, 1969) was based upon three premises. First, people acted based upon the meaning objects and events have for them. Second, the meaning assigned was based upon their interaction with other people, and third, people selected objects and events out of their environment and process them through time to make meaning. When a person was asked about an event in her childhood she told a story that appeared random, but because it was selected it held meaning to that person who processed it over time. This indicated their story was not extraneous. It told about their interaction with other people within a specified time and place. For purposes of research, the stories about how people chose to act or not to act throughout life provide a series of events and associated meanings that tell about aging. The life course paradigm enabled the researcher to understand the developmental changes women with disabilities experience. Harrison (2004) documented through a review of the historical and extant research on women with disabilities that four issues were important for the understanding of the development of women with disabilities: Their lives are highly interdependent, Institutions for people with disabilities may shape or alter life course development, 10 Cultural and historical context shape the meaning of gender and disability, and There was a continued, not episodic, impact of impairment on social role development. The life course paradigm provided the researcher a useful tool for understanding the meaning of aging from the perspective of women with disabilities (Harrison, 2004). The life course paradigm was found to be consistent with phenomenological views of time, which was relevant when studying the effects of aging. The major assumption of the life course paradigm, which was based on the importance of past events on present life pathways, was explained with Husserl's description of how present and future was based upon past perceptions. According to Husserl (1999), when time was viewed as individual consciousness, it was the medium of existence that passed without regard in the present. It took form through a stream of perceptions while allowing the person to anticipate the future and bring the past into the present. Perceptions in the present ultimately became recollection. In other words, they were objectified and brought forward as recollection but never again as a perception. The perceptions that passed remained in the past despite new perceptions. Continually passing perceptions were again objectified within the mind. According to Husserl, the human function of objectifying past perception allowed people to build an identity, reality, and history. 11 The objectification of continually passing perceptions was valuable to this research on aging because it allowed for the understanding of the passage of time with age and the accumulation of knowledge of oneself and others. Aging was understood within time because every moment perceived was placed in sequence by time with death reminding us of its end (Berger & Luckman, 1966). Moreover, the objectification of past events as recollection made the experience of events in time knowledge, and this knowledge formed our history and made us aware of the limits of our bodies. Geertz, in his work with the Balinese, wrote that time could be marked in many ways to gain an understanding of its passage, yet the "most important is by the recognition in their self and in their fellowmen of the process of biological aging, the appearance, maturation, decay, and disappearance of concrete individuals" (1973, p. 389). Aging occurs within time and time is the framework for all interpretations (Heidegger, 1962). Understanding the impact of disability from a hermeneutic phenomenological view of the life course may advance our understanding of how aging was experienced from the standpoint of women with disabilities. According to Shakespeare & Watson (2001) there is a need for an understanding of disability that values impairment as part of the continuum of human experience instead of objectifying and dividing persons based upon categories of ability. In other words, disability should be contextualized as a lived experience dependent upon context (Gabel 1999) that does not place people into stringent categories of disabled and able-bodied. When the body is no longer seen as ill or in a sick role, persons with disabilities are viewed within a context of aging understood as variations of the 12 human body (Shakespeare & Watson). Within this context they are no longer the other or the excluded, but active members of society aging within a different context. Just as women were reexamined when acknowledged to have a varied experience from men, women with disabilities must be explored--not as an extension of disease, medicine, illness or men with disabilities, but within their own lived experience. The life course trajectory combined with a disability trajectory set within the historical changes experienced by women can guide the understanding of how disability affects women with disabilities. Based on the work of Scheer and Luborsky (1991), Schuster (1993), Campbell (1994) and Wenneberg & Ahlstrom (2000) the life course trajectory was adapted for women with disabilities and presented in figure 1. 13 2000 1990 1980 1970 1960 1950 Life Course Events Era of Liberation Era of Transitions Era of Limitations Vanguard Era Cultural and Historical Change Disability experience with age Figure 1. Life course development for women with childhood onset disability. Adapted from the work of Campbell (1994), Scheer & Luborsky (1991), Wenneberg and Ahlstrom (2000), and Schuster (1993) 14 DEFINITIONS Childhood onset disability was understood as a permanent functional impairment resulting from pathology and/or damage that occurred at or prior to age thirteen and impacts adjustment over the life course. Gender was a set of culturally prescribed attributes that characterize the degree of femininity and/or masculinity perceived by others and/or enacted by the individual. Impairment was an objectively or subjectively determined alteration in the body's ability to function in a way that is normal. For example, the inability to move an arm or leg was impairment. Disability was a relative inability to meet the demands of the sociocultural environment. The loss of one's job due to the inability to sort papers, which was attributed to arm paralysis, was an example of disability. Culture was a set of meanings that were locally shared among people and enabled them to communicate and advance their knowledge (Parsons, 1951; Geertz, 1973; Hall & Neitz, 1993). Aging was a process of changing meanings set within chronological time. Frailty was defined as being in a state of increased risk for negative health related outcomes (Fried, Ferrucci, Darer, Williamson, & Anderson, 2004). Comorbidity was defined as more than one medically diagnosed and recognizable condition in one individual (Fried, et al., 2004). 15 The life course was defined as the "culturally defined script of normatively expected stages and transitions for the socially defined group" (Scheer & Luborsky, 1991, p. 1174). Hermeneutic phenomenology was defined as a methodology used to guide the understanding of the lived experience through the explication of transcribed text (Cohen, Kahn, & Steeves, 2001). The goal of H/P research is to understand the meaning of a phenomenon as told by those experiencing it. ASSUMPTIONS People act based upon the meanings they gain from interaction within their environment and the derived meanings are processed over time. (Blumer, 1969). We can understand the meaning of experiences through communication, which may include facial expression, gestures and written or verbal expression (Gadamer, 1960/2000; Polkinghorne, 1983). The most accurate interpretation of the meaning of experiences conveyed is gained through a precise understanding of the social, cultural, and historical context in which people live out their lives (Gadamer, 1960/2000). Early events within the life course impact later adult development (Elder, 1996, 1998). A person's biography influences how she reacts to and adapts to any new events (Elder & Liker, 1982; Elder & Chan, 1999). 16 Gender, ethnicity, and disability have culturally assigned meanings that may influence perceptions of health. SIGNIFICANCE TO NURSING Although this was not a study of the practice of nursing, it was designed to inform nursing praxis. Nurses are challenged to take the study findings and use them to guide the care of women with disabilities. This involves the care provided in acute, rehabilitation, and community settings. It also involves the care given when influencing policy decisions and interacting with women on a daily basis. This was a study of women with childhood onset disabilities done to inform nursing praxis of the meaning found in aging. When historical shifts in the care of persons with disabilities were examined, the need for this understanding becomes clear. In only four decades, society moved from celebrating the survival of persons with polio to contemplating assisted suicide for persons with disabilities that threaten quality of life (Koch, 1999). The American public, scientific community, government, and health care community have been consistently faced with difficult choices surrounding the use of technology and the subsequent formation of policy designed to care for those in need. One of the most controversial has been the decision to prolong life in the face of disability and possible suffering. Other decisions included how to best distribute resources through entitlement programs to the elderly and/or need-based programs to persons with disabilities. All of these decisions have surrounded the interpretation of the meaning given to the experience of aging and to disability, often by people 17 who have not lived the majority of their life with a disability. Nursing was viewed as one discipline that could guide the application of new technology respectfully into clinical practice (Newell, 2000), and help guide policy decisions designed to improve the lives of persons aging with disabilities. However, nursing must begin with an understanding of the life course experience of disability and aging. Without this information, society may waste valuable resources on health care policies and provisions not grounded in the lived experience of women aging with disabilities. Life course stories have clinical application because nurses can use them in practice to guide care. According to Frank (1996), stories could be analyzed to capture the meaning of an experience for a group, which could be used by health care providers to make assessments and provide care that may indicate a need for further intervention. These stories could highlight what women with childhood onset disabilities find as beneficial while aging with a disability and provide nurses a source to validate their interpretations of their patient's experiences (Frank, 1996). Women with disabilities may also serve as role models for people aging into disabilities after years without impairment. Nurses can use the information provided by women with childhood onset disabilities to build interventions for successful adaptation for women who age into impairments. In an analysis of the Disability supplement to the 1994-1995 Health Interview Survey Vebrugge & Yang (2002) analyzed the phase I data that consisted of 77,437 adults. They compared those who aged into disability to those who had a disability onset prior 18 to age 20 years. They reported that people with early onset disabilities, disability prior to age 20 years, had more disabilities and more social participation than those with later life disabilities of similar ages. This work indicated that people with childhood onset disabilities deserve further study to understand how they adapt to their impairments while maintaining social roles. Moreover, in a study comparing three women's views of aging Harrison and Kahn (2004) reported that the woman with the childhood onset disability was more apt to choose social interactions that supported her view of self than the woman with adult onset chronic illness who felt stigmatized by her impairment and remained isolated. Women with childhood onset disabilities may provide strategies that can be beneficial to all women as they age into later life. 19 Chapter 2: Literature Review In order to examine the current knowledge base that captures the meaning of aging for women with childhood onset disability, five major areas of literature were reviewed. The first section of the literature review focused on the meaning of aging. This section was followed by a review of life course studies of aging women. Although this was not intended to be an exhaustive review, it provided an understanding of aging women within a life course context. The third section was a summary of studies that reported the experiences of aging with a disability. A fourth section narrowed the report to the physiologic and psychosocial changes experienced by polio survivors. In the final section, studies that represented the experiences of women with disabilities within a life course perspective were reviewed. This section was essential because few studies directly examined the experience of aging for women with disabilities. THE MEANING OF AGING Aging has been interpreted differently by different groups throughout time. Understanding that meaning is of significance because the meaning that aging has in "in any given society puts that whole society to the test, since it is this that reveals the meaning or the lack of meaning of the entirety of the life leading to that old age." (De Beauvoir, 1970/1996). Covey (1992) reviewed the meaning of old age across history and found that it differed over time and between genders. For instance, Covey noted that biblical interpretations of age were less focused on chronology and more focused upon being functional and living a good life. Within the biblical view of aging, the vitality of the soul grew 20 while the body perished. The ancient Greek philosopher, Hippocrates, viewed old age as starting at 56 years, and a medieval scholar wrote that old age began at 30 years for women and 50 years for men (Covey, 1992). Throughout the middle ages and beyond, women were perceived as aging at an advanced pace compared to men due to their limited time as objects of sexual attraction and childbearing ability (Covey, 1992). Modern views of aging have shifted to coincide with retirement and proximity to estimated time until death. Today, as people live longer and need to remain in the work force longer, old age may increase to well in advance of 65 years (Covey, 1992). The meaning of aging, however, has not been fixed at any specific chronological age. The meaning of aging has traditionally been studied in the later years of life because with time and experience older people have been capable of integrating a large variety of positive and negative experiences to find meaning (Hulbert & Lens, 1988). For instance, Erikson, Erikson, and Kivnick (1986) broke chronological age into stages of life with associated tasks, meanings, and roles. The primary task of the later stage was to find meaning in past experiences. Persons were to review the events of their life to find meaning in what had come and gone. In a qualitative phenomenological study comparing 19 undergraduate students to 17 older adults, older individuals did not associate aging with any particular event nor did they recognize when it was that they became old (AdamsPrice, Henley, & Hale, 1998). The older adults were, however, more apt than the younger adults to integrate positive and negative experiences in order to find meaning in what their lives had been. The younger adults were more apt to value 21 their image over the substance of their lives. According to Adams-Price, Henley, & Hale (1998) aging emerged as a positive experience despite associated negative changes. The meaning of aging may be described as a life course phenomenon perceived with increased value in the later years. Levinson theorized that aging was a life course phenomenon with specific social roles, psychological tasks, and social expectations that were set within various stages of life. For Levinson (1986), life consisted of an orderly sequence of `periods' that were characterized by stable, life building times and interrupted by times of change that led to the next period. Men and women had the same periods within each era of their lives described as childhood (0 to 20), early adulthood (17 to 45), middle adulthood (40 to 65), late adulthood (60 to 85), and late-late adulthood (85 and up). These periods and eras were invariant but overlapping stages of the life. Within each era, each person was required to complete a set of tasks. For instance, within the early adult era there were four tasks to be completed: a) forming a dream, b) forming a mentor relationship, c) forming an occupation, and d) forming an enduring love relationship (Levinson & Levinson, 1996). The framework applied to all human beings, and served to highlight the variations in culture, class, history, and gender (Levinson & Levinson, 1996). The problem with Levinson's stages theory of aging, however, was the emphasis on the fixed stages of life. Life events in modern society have been found to vary depending upon the individual life and the social circumstance (Neugarten, 1968); therefore, events have not been fixed to specific stages of life. 22 Despite the variability in life, the meaning of aging has been shared among people within western culture and that shared meaning may influence individual perceptions of the aging self over time (Levy, 2003). According to Goffman (1997) the moral career of a person was the change a person perceived in their self-image as others looked at them over time. The inability to accept aging due to the youth orientation of society has forced many to devalue their later years of life (Andrews, 1999). The feeling of being stigmatized for aging may create a desire not to age or to hide one's age. Moreover, biomedical images of aging have predisposed the word geriatric to mean mental and physical decay (Hepworth, 1995). Hepworth suggested that when the meaning of aging was associated with ill health, elderly individuals were treated like expiring objects-- "cared for but socially neglected" (Hepworth, p.17). Over time, associating negative meanings with aging may have deleterious effects on health. In a study of 54 men and women over age 62, Levy, Hausdorff, Hencke, and Wei (2000) found that negative images of older adults heightened cardiovascular reactivity while positive images reduced cardiovascular reactivity. Levy, Slade, and Kasl (2002) studied the effects of negative views of aging on health outcomes in a population of 433 participants over age 50 for as many as 20 years. Those who had more positive views of aging at baseline had better functional health scores over time than those who had more negative views of aging at baseline. These results remained significant after controlling for baseline functional health, self-rated health, age, gender, race, and socioeconomics. The research on negative images of aging provided growing evidence that the shared 23 negative meanings of aging, once internalized, may directly impact health outcomes. For the past 20 years gerontologists have recognized the need to study people who age into late life in successful ways. In other words, there was a recognized need to study people who age without developing the problems once thought of as aspects of normal or usual aging, such as osteoporosis and isolation (Rowe & Kahn, 1987). Although successful aging has been defined differently by different researchers depending upon their values (Torres, 1999), the theory of selection, optimization, and compensation by Baltes and Baltes (1990) was reviewed here. According to Baltes and Baltes, success was gained by meeting a combination of researcher-defined subjective and objective criteria for success. These could be any combination of length of life, biological health, mental health, cognitive efficacy, social competence and productivity, personal control, and life satisfaction. These criteria could be achieved through two strategies. First, the person could promote her health over the life course, and second, the person could be adaptable enough to minimize the loss associated with aging using strategies of selection, optimization, and compensation (Baltes & Baltes, 1990). These strategies would allow the individual to adapt to unique circumstances with aging. Research on successful aging has been varied due to the lack of a multidisciplinary framework that combines what success is and how people might obtain it (Steverink, Lindenberg, & Ormel, 1998). Frequently, success has been defined by the ability to maintain functional ability over time (Seeman, Unger, Mcavay, De Leon, & Mendes, 1999; Strawbridge, Cohen, Shema, & Kaplan, 24 1996; Seeman & Chen, 2002). Tate, Lah, and Cuddy (2003) explored the definition of successful aging in nearly 4,000 retired air force men with a mean age of 78 years. These authors reported that 30% of the men defined successful aging as related to their health. In a qualitative study of 30 women age 78 to 88 years, Day (1992) reported that negative changes in health and ability were the most traumatic experiences to the women, second only to loss due to death of a family member or moving away from family. This sample of women was relatively functional, 90% of them could take care of their own functional needs. Few studies were found that examined the meaning of successful aging in the context of life long disability. Nilsson, Ekman, and Sarvimaki (1998) published a phenomenologicalhermeneutic study of the meaning 30 older people (age 82-92 years) gave to their lived experiences. Old age experiences were broken down into successful aging, good old age, comparatively good life in old age, bad aging, and a miserable life in old age. The health of the participants was similar across groups, but the participants in the successful aging group did not mention their health as an issue while those in the miserable aging group mentioned it frequently. Moreover, the successful group had close relationships and was actively involved while the miserable group was lonely and idle. This study indicated that perceptions of health may influence well-being for those who have not lived their lives with impairments. It may also indicate that those who complain about their health and associated impairments may be perceived as less successful as they age. 25 The meaning of aging and its relation to illness was explored by Gadow (1982) in a phenomenological treatise. Gadow described four levels of relation between the self and the body over time. First, the primary immediacy was defined by the self being conscious of acting with the body in the world. Second, the disrupted immediacy was when incapacity disrupted the harmony between self and body. The body was an object that encumbered the ability of the self to act. This occurred with pain or disease. Third, cultivated immediacy was the transcendence of impairment in order for the self to overcome the problems of the body. The self and body are reunited and able to work together again after the struggle caused by disease or impairment. Finally, aesthetic immediacy was the meaning given to the body with aging and illness. The self viewed the object body with commitment to concern, perseverance, and development. The body was viewed with aesthetic regard as a whole with the self. The meaning given to the body by the self made the experience of living in the world with the aging or impaired body worthwhile. Kaufman (1986) completed 15 intensive life history narratives with white middle class men and women regarding the meaning of aging. Their experiences were brought to the present to create the individual identity through a process of finding meaning. The elderly individuals Kaufman spoke with were expressing themselves as ageless despite noting multiple physical changes that had occurred in later life. Age was not an emphasis for the people and their identity remained constant despite the cultural changes that were demanded throughout life. Moreover, Kaufman stated that individuals integrated their life stories of work, 26 friendships, family, and health to "connect and integrate the diverse experiences of a life time" (p. 25-6). Sources of meaning for these elders were structural and related to personal values. The structural sources of meaning were family ties, socio-economics of childhood, education, geographic mobility, and work; national historical events were not sources of meaning. The values, which were sources of meaning, were achievement, productivity, progress, social usefulness, and individualism through self-reliance, initiative and industry. By understanding the sources of meaning to these elders, the whole life was revealed and made sense of for the researcher and the participant (Kaufman). In a study of the shared meanings of adapting to the nursing home, Kahn (1999) used lifetime narratives consistent with the method described by Kaufman (1986) to gain a thick description of the experience. The participants were mostly women with chronic illnesses. These 21 participants described through the course of several 20 minute to 1 hour interviews how they recognized the ambivalence of the situation, downplayed the negative, and used their will to create a home in the institutional environment. The participants felt a personal responsibility to make the best of the situation through the process of making the room they were assigned into a home. By bringing in personal items that had meaning to the individual the environment provided them with a source of meaning--home. This, at least partially, restored their sense of well being. Summary The meaning of aging is a subjective interpretation of the lived experience, which has different meanings across groups. The meaning may, however, be 27 shared by groups within a culture. When the shared meaning is negative it may negatively impact the health outcomes of persons as they age. Gerontologists have increasingly focused upon successful ways of aging. This has been defined differently, but frequently associated with better health and functional ability. It has not been well researched within groups with life long impairments or disabilities. By labeling successful aging as functional ability and not investigating the experiences of persons with disabilities, researchers may be inadvertently delegating persons with impairments to the unsuccessful category without understanding how they age. It is possible that persons with life long impairments perceive success in aging by finding meaning in the experiences they live as an embodied self while adapting to their changing environments and abilities. STUDIES OF AGING WOMEN: LIFE COURSE PERSPECTIVES As a starting point for the understanding of the perspective of the lives of women with disabilities, it is important to review what is known about the life course of women in general (Danek, 1992). In this section, selected life course studies focusing on aging women are presented. Using data from the Berkeley Longitudinal Study of normal development, Elder and Liker (1982) conducted a quantitative investigation of the life course outcomes of women born from 1890 to 1910. It was hypothesized that loss during the 1930's would impact well-being in late life with health being a balance between loss and gain of resources over the life course. The results indicated that women's lives were shaped by the great depression, which was most evident in their emotional health in old age. Women 28 of working class backgrounds, who experienced hard times during the depression, experienced poor emotional health and intellectual capability while women of middle class backgrounds, who also experienced hard times, became more selfassured and cheerful in old age. Interestingly, middle class women who did not experience hard times did not gain the same emotional benefits. It was posited that some women are more prepared for old age due to their life course experiences that strengthen their ability to adapt (Elder & Liker). In a qualitative case study of three aging women using a life course approach, Shenk (2001) argued that women's late adult lives are influenced by the relationships they have with their families. The relationships influenced life choices and opportunities, which molded how their later lives were viewed. For instance, one woman who lived her entire life with her parents after having a child, found herself being their caregiver in old age. Later she became bitter with few interactions and lived alone in the family home. Her life choices were influenced by the out of wedlock birth of her child and her families' response. In late life, she became an emotionally isolated woman without contact with her own child. The early life experiences of the woman were given meaning through her interactions with significant others and these impacted her life as an older woman. The different life course paths that women enter were explored in a sample of 313 wives and mothers interviewed in 1956 and 1986 (Moen et al., 1992). The rate of disability or severe illness experienced in persons who were healthy in 1956 was examined over the 30 year period. The duration and timing of adult roles were also examined. The researchers found that multiple roles in 1986 were 29 associated with better health in 1956 and 1986. About a third of the women experienced some form of severe illness or disability over the 30 year period. Educational level or number of children was not significantly related to duration of health. The women who engaged in clubs and other organizations experienced a significantly longer period without disability or severe illness. The accumulation of roles over the 30 year period was positively associated with the women's appraisal of health in 1986 even when controlling for socioeconomic variables such as social class, husband's occupation, and income. The authors posited that these findings indicated that women follow two distinct paths influenced by role acquisition and by health. In a study of the life course development of 68 middle aged (age 33 to 56) women, Rossi (1980) investigated how women cope with family and work responsibility as well as how family and work affected the meaning they associated with aging. This group of women was part of the baby boomer generation, which was characterized as an educated cohort of women who have participated in sexual freedoms and witnessed civil rights and feminist movements. Many of these women postponed motherhood and opted to further their careers, which was unique to this cohort at that time in history. The results indicated that none of the women wanted to be older than their chronological age; most wanted to be around 6 years younger and wanted to live to around 75 years. Women with larger families and women who were older when their first child was born reported they wanted to be significantly younger than women with smaller families and women who were younger when their first child was born. 30 Overall, women who perceived life was going well were satisfied with their age. Moreover, the more age-related symptoms they reported, the worse the relationship with their adolescent children. Rossi's study indicated that strain can occur in women's lives as the social change characteristic of their cohort is enacted in their daily lives. Summary In summary the literature indicated that women's lives are interconnected (Shenk, 2001) and affected by social events and the historical time period (Elder & Liker, 1982; Rossi, 1980). This can, in turn, affect their health, social activities, and ability to adapt to change in later life (Elder & Liker; Moen et al., 1992; Shenk). STUDIES OF AGING WITH DISABILITY Few studies have examined the effect of aging on the health status of women with disabilities. Coyle and colleagues (Coyle, Santiago, Shank, Ma & Boyd, 2000) studied the degree of secondary conditions in a sample of 165 women age 18 to 65 years with varying types of disabilities. These researchers found high rates of secondary conditions that were dependent upon the type of initial disability, with the majority reporting fatigue, spasticity, pain, mobility problems, and physical de-conditioning. The most severe secondary problems were amputations and respiratory problems. A large proportion of women reported poor functional ability to complete everyday tasks. Other work has indicated that women with disabilities may be at increased risk of heart disease and osteoporosis after menopause due to inactivity and non-weight bearing 31 activities (Vandenakker & Glass, 2001). Stuifbergen & Becker (2001) reported that women with MS who engaged in health promoting behaviors over time reported less functional decline than those who did not engage in health promoting behaviors. This work indicated that functional decline was not a purely biological necessity of aging for women with disabilities. A behavioral component exists, which may be influenced by the psychological, social, and cultural context. The psychosocial aspects of being women and aging with disability have placed women at risk for further health problems. The impact of disability, aging and gender create a triple jeopardy that place women with disabilities at risk of social marginalization and poor health beyond that of persons without disabilities or men with disabilities (Pentland, Tremblay, Spring, Rosenthal, 1999). Pentland and colleagues documented that women with disabilities were concerned about their changing bodies with age and how that affected their social roles. The loss of social roles placed them at risk of losing needed health benefits for access to care, thus increasing their risk for further health problems over time. Unfortunately, this work was limited due to the inclusion of participants with a wide age variation (age 25 to 71 years of age) without an exploration of the influence of culture, cohort, or timing of disability (Pentland et al). Despite physiologic changes in the body, there are positive factors associated with aging. Researchers have reported that factors associated with decline are decreased in those who engage in health promoting life styles over the life course (Fries, Green & Levine, 1989). The prospect of a compression of 32 morbidity--extension of life without disability-- has led to theories of successful aging, which began with studies of elite elderly athletes and has culminated in a theory of selection, optimization, and compensation with age discussed earlier (Baltes & Baltes, 1990). Other researchers focused upon positive aspects of aging that included Neugarten's (1968) and Erikson, Erikson, and Kivnick's (1986) theoretical work on mental growth in aging. This led to work indicating that selfesteem can be high in the elderly (Herzog & Rogers, 1986). Despite losses in health, the elderly may have optimistic views of themselves with a high sense of purpose (Mossey, 1995). The need for an insider view of the aging body, which is suitable for qualitative methods, is often needed to integrate the lived experience of aging with the changes in the biological body. Qualitative methods may be suitable for integrating the experience of aging with the biological changes but few qualitative studies of women aging with childhood onset disabilities have been reported in the literature (Wiley, 2003). Qualitative reports of the experience of aging with disabilities may benefit persons with disabilities by giving them an outlet to compare their experiences with others, by giving them more control over their lives by reading about what others have done, and by providing them an inspiration in regard to their aging potential (Wiley, 2003). Despite the possible benefits of qualitative research for women aging with childhood onset disabilities few have been published in the literature. The impact of disability throughout the life course was examined in an ethnographic study of persons aging with the effects of polio (Scheer & Luborsky, 33 1991). The biographies of three people were set within a developmental and life course context that was influenced by historical change. The normative life expectation and developmental norms and the rehabilitation and recovery from polio influenced life course experiences. The influence of the historical movement surrounding polio was strong enough to sway the participants to label themselves as having a Type "P" (for polio) personality. The polio survivors were driven to normalize. The main problem they reported with aging was not related to medically defined conditions, but with the premature loss of roles and goals for the future. This study was a contribution to our understanding of aging with a disability, but it did not address the impact of gender upon perceptions of aging. The work by Scheer and Luborsky (1991) was followed by a dissertation study of 15 purposively sampled polio survivors who experienced the disease as children (Lewis, 1992). The inclusion criteria for this study were paralytic polio prior to age 13 and intact cognitive function. Lewis's research was based upon polio as an illness trajectory. The themes reported were the acute illness phase, recovery with a long plateau, unanticipated late effects, and further functional decline. Lewis (1992), like Scheer and Luborsky (1991), found that two life course themes dominated their biographies, but in this sample the cultural and developmental normalcy themes were accompanied by themes of chronic and emotional distress with unending struggles. This work supported the need to provide context to disability within the life course, but persons with disabilities often criticize work that places them within a chronic illness perspective (Oliver, 34 1996). The view of the group as having unending struggles may have emerged due to the focus on polio as a chronic illness with associated sick role behavior. Charmaz (1991) conducted interviews with 55 informants with chronic illnesses that ranged from neurologic impairments such as multiple sclerosis to those with circulatory diseases and cancer. Her study focused upon the construction of identity and time while experiencing chronic illness. All of the participants were white and ranged in age from early twenties to over 70 years of age. She conducted multiple interviews with the participants in order to gain comfort with disclosure. She wrote that her informants were able to understand the abstract nature of her study when they were given time to think about the nature of her questions. This also allowed her time to speak more in depth with the informants about issues that arose during previous interviews. In regard to this study, the most salient interpretations that Charmaz (1991) presented were related to time because time is a framework for aging. Charmaz provided a thick description of how chronic illness could change the way time is experienced. For instance, if people became primarily positioned in their past, they could lose the experience of the present. These people would reflect on past memories without attending to the present or future because only the past held meaning for them. She also found that if people became caught up in present activities of caring for their illness, they could hasten time. Others found themselves longing for a future that brought them immortality and freedom from their failed physical beings, or they searched for a purpose in life that brought them immortality or lasting identity. These experiences of time were many of the 35 ways those years were marked and remembered as events passed. However, Charmaz only interviewed Anglo Americans, interviewed a wide range of age cohorts, and made little attempt to understand disability apart from chronic illness. The disability experience was analyzed by Wenneberg and Ahlstrom, (2000) who interviewed 15 polio survivors. The five themes identified were the acute phase of severe illness, rehabilitation phase with restoration of capabilities, phase of relative stability, transitional phase where functional capacity is lost, and new dependence on medical technology. These individuals communicated stories of strength in overcoming their initial disability but found their new disabilities could not be overcome in the same manner. The disability that arrived with aging required new resources from them and their memories of their childhood disability overwhelmed them--creating a sense of vulnerability. This work was similar to the prior studies but added to the literature because it explored themes related to adjustment to later life disability. Again, gender was not explored as an influence on the life course of these participants. In a phenomenological study of the experience of aging for approximately 27 men and three women with spinal cord injuries living in Japan, researchers reported that six underlying themes emerged (Iwakuma, 2001). First, the participants stated that time had been altered by their impairment. One participant stated that time had stopped since his accident and he was only reminded of its passage by a birthday card. Second, participants were concerned about how their bodies would adapt to changes associated with aging, but contact with disabled 36 elders was a calming source of feedback for them. By seeing others cope with the effects of aging, younger persons were better prepared for the future. Third, persons with disabilities felt they aged differently than non-disabled people. They reported that the opportunities for fulfilling life goals were altered by their disabilities. Fourth, many reported they were better prepared for the effects of aging because of their early onset disabilities. Impairment had altered their trajectories but prepared them better to appreciate life's gifts that occur over time; such as meeting new people. Fifth, the participants had concerns for their family--especially their wives because they relied so heavily upon them for their care. As their wives experienced physical changes with age, they feared what those changes might mean for them. Finally, they did not fear changes that were already present. They did not fear the loss of physical functioning that many without disabilities fear with aging. This study was limited due to its low number of women and lack of gender analysis, but it did provide a unique glimpse at the phenomenon of aging for persons with disabilities in Japan. It was unclear how the experiences of those in Japan would overlap with those in the United States. It was not until Campbell (1994) reported a quantitative study of impairment related outcomes based upon timing of disability in the life span that gender was considered an influence on the life course development of persons with disabilities. This study was conducted with three groups of persons aging with disabilities--those who have had polio, stroke, and spinal cord injuries. Again, this work supported the use of life course theory with persons aging with disabilities. Campbell found that the time of disability onset was significantly 37 related to the degree of impairment. Women who developed post polio syndrome (PPS), which is characterized by new onset weakness and fatigue, had significantly more depressive symptoms than women without PPS. They also had higher depressive symptoms than men with or without PPS. Women were also more likely to have had to stop their education based upon their polio-related impairment when compared to men. This study compared outcomes based upon gender using a life course theory approach. It indicated that further work was needed to understand how gender impacted the problems associated with aging and subsequent adjustment. Frank (2000) reported the results of a 20-year hermeneutic phenomenological life course investigation of one woman born in the United States with no arms or legs. Findings indicated that many barriers grew out of cultural stereotypes and influenced the participant's ability to become employed, stay married and remain living within the community. These cultural barriers combined with the historical time period, were a major influence on the participants development into mid life. Frank was able to report how researcher and participant may co-construct the life course story in American culture. However, this study did not follow the participant into later adulthood and was based on the experience of one Anglo American woman. Summary In summary, studies were found that examined the experiences of aging while living with a disability, but they did not examine the effects of gender on the experience (Albrecht, 2001; Iwakuma, 2001; Scheer & Luborsky, 1991; 38 Trieschmann, 1987). Other studies examined the health experience of persons with chronic illness over time, but did not make an attempt to understand disability apart from an illness experience (Charmaz, 1991; Lewis, 1992; Thorne, 1993). Studies that did focus on aging with disabilities did not incorporate the impact of gender on the experiences (Iwakuma, 2001; Wenneberg & Ahlstrom, 2000). Frank's (2000) 20-year case study of one woman provided a glimpse of how difficult experiences may be for women as they enter midlife. Yet, this study was not designed to incorporate shared experiences of women, nor did Frank follow the participant into later life. Qualitative studies may be beneficial to persons aging with a disability but few qualitative studies were found in the literature (Wiley, 2003). Another limitation in the extant literature was the lack of multi-ethnic samples of persons with disabilities. STUDIES OF AGING WITH POLIO Persons who survived polio have been the focus of neurological and muscular studies due to the occurrence of age-related muscular weakness and fatigue. Twenty-eight to 40% of polio survivors have reported age-related symptoms known as Post Polio Syndrome (PPS) (Halstead, 1998; Lecompte, 1997). The pain, new onset weakness, and fatigue with PPS have been associated with factors associated with the acute illness (Currie, et al., 1993). Overall, PPS has resulted in decreased mobility (Willen & Grimby, 1998), a new need for ambulatory and ventilatory aids (Macdonald, Gift, Bell, & Soeken, 1993), difficulty dressing, a new need for personal assistance, and a change or cessation in occupation (Jubelt & Cashman, 1987). The problems experienced by polio 39 survivors with age range from pain (See Table 1), respiratory problems (See Table 2), and decreased muscle strength (See Table 3), to various symptoms of decline (Table 4). Moreover, studies that tested therapies to help with these changes were predominantly focused upon exercise as a therapeutic option (Agre, Rodriquez, & Franke, 1997; Ernstoff, Wetterqvist, Kvist, & Grimby, 1996; Noellet, Beelen, Sargeant, de Visser, Lankhorst, & de Jong, 2001; Willen, Sunnerhagen, & Grimby, 2001), but small sample sizes with carefully selected participants make it difficult to judge the efficacy of exercise interventions for PPS at this point in time (McNaughton & McPherson, 2003). 40 Table 1: Pain studies in persons aging with polio. Design Self-report survey Sample 139 Polio survivors Findings 64% had upper limb pain and 74% used mobility aids. Those who used mobility aids were at risk for upper limb pain. The group had pain a mean of 19 years in a mean of 5 locations. The women had pain longer than the men. Aches in back and joints. Cramps in lower extremities. Lower back (66%), knees (47%), and upper joints (38%) were most frequent sites of pain. Physical strain preceded pain. Heat and relaxation relieved pain. >50% experienced pain everyday. Muscle weakness had no correlation with pain. Author, Year Koh, Williams & Povlsen, 2002 Widar & Ahlstrom, 1999 Self-report survey 37 with PPS, age 52 to79 Widar & Ahlstrom, 1998 Self-report survey 35 with PPS, mean age 65 Willen & Grimby, 1998 Self-report survey 32 with PPS 41 Table 2: Pulmonary changes studied in persons aging with polio. Design Self-report survey Sample 584 with PPS. Findings Author, Year Chasens, Umlauf, Valappil, & Singh, 2001 Weinberg, Borg, Bevegard, & Sinderby, 1999 MacDonald, Gift, Bell, & Soeken, 1993 Physiologic study Physiologic study Lin, Liaw, Chen, Cheng, Wong, & Chiou, 2001 Physiologic study Stanghelle & Festvag, 1997 Longitudinal over 3 to 5 years with survey questions and physiologic measures Those with sleep apnea increased frequency of naps. Poor sleep quality predicted increased risk of PPS. 5 men with PPS Majority had normal age 42 to 58 blood gas results but had ventilatory insufficiency when exercising. 23 PPS persons Mean maximum with age and inspiratory pressure was gender matched significantly lower for comparison with the PPS group. Control mean age of 55 group improved in strength over three trials but the PPS group did not. 44 persons with Pulmonary function for idiopathic scoliosis the polio group was and 16 with polio related to scoliotic angle, related scoliosis kuphotic angle, upper vertebra of the scoliotic curve and age. Respiratory problems were restrictive and not predicted by radiograph alone 68 persons Lung function was a hospitalized with reduced restrictive type. PPS. Mean age of Weight and polio 55 symptoms increased over time. 42 Table 3: Muscle changes in persons aging with polio. Design Longitudinal with physiologic measures Findings Muscle deterioration was present in the flexor muscles of ankle, hip and knee, but it was not strongly related to age, time since polio, or gender. Rate of deterioration greater than expected with normal aging. Rate of decline averaged 1% 27 with Longitudinal per year. The muscles polio with mean age 51 showed evidence of chronic physiologic and new denervation. No years measures loss of whole motor neurons. Slow disintegration of terminal nerve axons. Physiologic 21 persons Group with PPS had more study with polio muscle fatigue than controls. and 20 Group with PPS had healthy age impaired activation of matched muscles when not fatigued. controls Questionnaires 23 with 10 had symptoms of late and polio progressive motor deficits. physiologic The rate of progression was measures using uniform over time. Severe longitudinal residual impairments were design associated with symptoms of decline. Recovery time from Physiologic 25 with study polio related muscular exercise was greater in those with decline, 16 complaints of decline. Those with polio with polio without decline and no decline, and did not differ from controls. 25 controls Sample 120 persons with PPS Author, Year Klein, Whyte, Keenan, Esqenazi & Polansky, 2000 Dalakas, Elder, Hallet, Ravits, Baker, Papadopoulos, Albrecht, & Server, 1986 Allen, Gandevia, Neering, Hickie, Jones, & Middleton, 1994 Sorenson & Windebank, 2002 Agre, Rodriquez, & Franke, 1998 43 Table 4: Various studies of decline in persons aging with polio. Design Chart review Sample 127 with PPS and 39 with polio but no PPS Findings Age at presentation, length of time since infection, weakness with initial infection, joint pain, weight gain, and muscle pain predictive of PPS. 58% reported muscle weakness, 56% reported increased disability. 53% reported increased problems with job and social integration. 78% reported that fatigue was major problem, Walking outside (46%) and climbing stairs (41%) were next. The differences between those with and those without PPS were in social and physical functioning not in measured muscle strength. 74.8% had some type of decline. 53% of those with polio had PPS. Cumulative incidence of PPS was 60% by 60 years of age. Decline was estimated at 35 years post onset of polio. Those with severest symptoms at onset had more problems with decline. Author, Year Trojan, Cashman, Shapiro, Tansey, & Esdaile, 1994 Ivanyi, Nollet, Self-report Redekp, Haan, survey Wohlgemugt, Wijngaarden & de Visser, 1999 Nollet, Beelen, Prins, de Visser, Sargeant, Lankhorst, & de Jong, 2001 233 with polio age 39 to 77 Self report 76 polio survivors and with PPS and 27 physiologic without PPS. study Kumakura, Takayanagi, Hasegawa, Ibara, Yano, & Kimizuka, 2002 Self report survey 662 with polio and 736 with spinal cord injuries 44 Age-related changes experienced by polio survivors after years of living with a stable impairment should be examined within a life course perspective in order to understand the multitude of affects these changes have had on their lives (Harrison, 2004; Maynard, 1995; McNaughton & Mcpherson, 2003). Persons aging with polio have reported higher levels of depressive symptoms when compared to non-disabled age matched controls (Kemp & Krause, 1999). Moreover, those who experienced pain, weakness, and fatigue associated with PPS have reported less satisfied lives (Burger & Marincek, 2000) and a poorer quality of life (Kling, Persson, & Gardulf, 2000) than those without PPS. This may be because their impairments with increasing age hampered their ability to socially integrate (Farbu, Rekeand, Aarli, & Gilhus, 2001). Researchers have noted the psychosocial changes with aging for persons with PPS. The problems studied were primarily issues related to life satisfaction (Table 5), coping (Table 6), and other social determinants of health (Table 7). 45 Table 5: Life Satisfaction studies in persons aging with polio. Design Self report study Sample 360 persons (121 with PPS and 177 with spinal cord injury) plus 62 controls 100 polio survivors with average age of 55 Findings The control group highest in all life satisfaction scales. PPS group scored higher then the spinal cord injury group. Author, Year Kemp & Krause, 1999 Burger & Marincek, 2000 Self report study Thoren-Jonsson, Hedberg, & Grimby, 2001 Self report study Kling, Persson, & Gardulf, 2000 Self report study 69 out of 100 had symptoms of PPS. PPS decreased their ability to be active and social. It decreased their life satisfaction. 113 polio Women and men < 44 had survivors with more emotional distress mean age of 57 then those 45 to 64. Most health problems were in work, housework, and leisure activities. Men reported more problems with housework. Persons who had problems with their social life had more complaints of problems with energy, physical mobility, pain, emotional problems, and isolation. 150 persons Perceived health associated with polio with with post polio symptoms. mean age of They had worse functional 61. status and worse quality of life then a national sample. The women with PPS had significantly worse pain. Only those ages 75 to 82 appeared functionally similar to the general population. 46 Table 6: Coping strategies used by persons aging with polio. Design Self report study Sample 119 persons: 33 with muscular dystrophy, 46 with myotonic dystrophy and 40 with PPS Findings The majority of problems were mobility and occupation related. People with muscular dystrophy had greatest reported problems. Women used more aids and own solutions to problems than men in basic personal care. People with PPS used more avoidance strategies for mobility problems. Work capacity (peak oxygen uptake) did not correlate with psychosocial variables. They had high adjustment and problem focused coping. They had low psychological distress. General weakness, fatigue and pain added to their distress. Illness related problems interfered with daily activities. They coped by accepting illness, preventing symptoms, changing activities, distancing, emotional reactions and seeking social support. Main theme was coming to a changed approach in response to changes in their bodies. Had flexibility in problem solving ability. Traded off independence and dependence. Author, Year Natterlund, & Ahlstrom, 1999 Schanke, 1997 Self report study with physiologic measures 63 polio survivors (43 women and 20 men with mean age of 55.3 years) 24 with PPS with average age of 66 Hansson & Ahlstrom, 1999 Qualitative ThorenJonsson, 2001 Qualitative 22 persons with late effects of polio 47 Table 7: Studies of social determinants of health in persons aging with polio. Design Self report study Sample 268 polio survivors Findings Many perceived no access to knowledgeable physicians or social and health care services. This interfered with their ability to cope with problems. Fewer polio survivors than siblings were working by age 40. 11 of 14 on permanent disability were women. Fewer with polio married than did siblings. More women with polio then men with polio were divorced. Significantly more siblings reported good health and good life. 75% ran out of energy quickly. Most had problems performing activities requiring lower body use. 43% satisfied with sex life. Residual weakness was associated with not being married. Most polio survivors married at same rate as controls. Education was associated with parental education for both groups. Majority of polio survivors worked past 60 years of age. Author, Year Foster, Berkman, Wellen& Schuster, 1993 Farbu & Gilhus, 2002 Self report study 168 polio survivors and 239 siblings Walker, 1998 Self report study 341 persons with polio with mean age of 56 Farbu, Rekand, Aarli, & Gilhus, 2001 Self report study 149 persons with polio and 98 controls 48 There is evidence that the lived experiences of women aging with paralytic polio may be similar to women with other chronic disabling conditions. (Stuifbergen, Harrison, Becker, & Carter, 2004; Stuifbergen, Seraphine, Harrison, & Adachi, in press). Similarities in symptoms and role expectations while living with impairments create commonalities in women's experiences despite differences between the etiologies causing the impairments (Stuifbergen, et al, 2004). Moreover, in a study of over 1600 persons with PPS, a model developed to investigate quality of life and health promoting behaviors in persons with MS was found to be similar for persons with PPS. Based upon the evidence supporting commonalities in experiences between types of impairment, it behooves researchers to be knowledgeable of the research on aging with PPS and aging with a disability in general. STUDIES OF WOMEN WITH DISABILITIES Women with disabilities are at risk for social and health problems with aging (Frank, 2000; Pentland et al., 1999) that threaten their ability to adjust to late adulthood, but few studies have been found examining the meaning of aging into late adulthood for women with childhood onset disabilities. The life course paradigm (Elder, 1994; Giele & Elder, 1998) provides one way to organize the studies that have been published into a coherent whole. The following section is a synthesis of studies grouped according to the life course paradigm and focused upon women with disabilities. 49 Lives in Time and Place Since the 1960's researchers have understood that historical time and place affect life choices and subsequent aging. Ryder (1965) described this as a cohort effect. The approximate time and place of birth can affect what a group experienced when they were born and as they aged. Larger societal and historical changes experienced are shared with persons from the same cohort, which is traditionally viewed as no more than a 10-year birth span. Elder (1994) stated that cohort effects are especially important when society is changing quickly, which has been the case for persons with disabilities. In the United States since the 1960's, there have been 13 different civil rights laws passed that were directed toward persons with disabilities (Harrison, 2002). For instance, legislation written in 1975 ensured education for children with disabilities, and the Olmstead Act of 1999 required that persons with disabilities not be institutionalized when similar less restrictive environments were available. The American's with Disabilities Act (ADA), which made discrimination against persons with disabilities illegal, has only been in effect for 12 years. Many of the laws passed over the last 50 years impacted the daily lives of persons with disabilities in the form of educational and residential environments that may impact health. Economic policies toward women with disabilities, which are set within a specific time period, may also exclude them from society. In a study of how patients qualified for social security disability benefits, researchers reported that participants waited as long as 72 months for benefits, hired attorneys, completed 50 multiple forms, and applied multiple times (Nasr & Welsch, 1996). The benefits provided were important because they provided access to health insurance and cash that allowed for increased independence (Nasr & Welsch). Moreover, in a study of gender differences in social security disability awards women received social security disability awards at a significantly lower rate than men even after controlling for the type of impairment and personal characteristics (Baldwin, 1997). Although men and women equally satisfied medical eligibility, women were less likely to meet vocational eligibility requirements. For women with disabilities, exerting the continued effort to qualify for benefits only to be rejected at an increased rate may prevent them from becoming independent members of society. The government has responded to the needs of persons with disabilities, however, the response has historically favored men. The first national disability law was enacted for veterans of the Revolutionary War and followed by legislation to benefit military merchant marines (Albrecht, 1997). Most government assistance has been either military or work related (Albrecht), which has excluded many women from gaining benefits. This has been compounded by the fact that social security benefits have been distributed with a heavy weight upon vocational and marital status, which has excluded many women with disabilities due to their low rate of marriage and employment (Meyer, 1996). Living with a physical disability in the Unites States has been characterized as isolating. In the classic work of Goffman (1963), stigma due to disability was well documented with cultural accounts of discrimination and 51 isolation of persons with disabilities. Murphy (1987) also added to our cultural understanding of disability in his studies of rites of passage. Murphy and colleagues ethnographic work reported that persons with disabilities in the United States were located in a liminal state--being viewed as neither ill nor well and unable to participate in American cultural norms (Murphy, Scheer, Murphy, & Mack, 1988). Culture is more than something a society has; it is something that is done to each member (Agar, 1994). The individual is immersed within a culture that is not only where they interact but also where they learn how to interact (Agar). It is within a culture that a person learns how to be a woman and others learn how to interact with her (de Beauvoir, 1952/1974). Within American culture, femininity is part of the essential expression of what it is to be a woman (Goffman, 1979; West & Zimmerman, 1987). The way a woman dresses, wears her hair, and walks produces signs that are regarded as expressive behaviors that convey to others she is a woman and indicate terms for contact in social situations (West & Zimmerman). Almost any activity is assessed to its womanly or manly characteristics (West & Zimmerman). Women with disabilities may feel stigmatized due to a self-image that is in conflict with how society views women (Goffman, 1963). Feeling stigmatized has been reported to lower the self-esteem of women with disabilities and subsequently influence their ability to perform social roles (Nosek, Hughes, Swedlund, Taylor & Swank, 2003). A person is affected by how people see her 52 over time and the change in people's response to her based upon that image (Blumer, 1969; Goffman 1963). The meaning assigned to a woman's impairment for purposes of explaining her body within a culture, may influence her identity, roles, behaviors, and health (Kleinman, 1980). For instance, in an African society, the way the Songye explained the disability of a child determined how the child was treated and their subsequent roles in the community (Devlieger, 1995). The American view of the `normal body' compared to the `disabled body' has been rooted in scientific explanations of what is normal for the human body and what is deviant. Women with disabilities have been described as "asexual, sick, retarded, handicapped, over sexed, and a burden upon society" (Anderson & Kitchin, 2000, p. 1164), and these images conflict with the slender sexually active modern woman that is promoted within American culture. Women with disabilities have voiced concern over their ability to meet the cultural demands of the ideal female body image (Ablon, 1996; Fine & Asche, 1988). In a study of body image, gender and disability, women have reported concern about the physical alterations that occurred and created a social stigma (Ablon). Cultural expectations can hinder the integration of women with disabilities into society and have been used to explain the differential treatment they receive in gender roles such as wife (Parker, 1993) and mother (Harrison & Stuifbergen, 2002; Thomas, 2001; Thorne, 1990). The cultural image of the ideal female physique is difficult for most women to attain. This may have contributed to eating disorders and low selfesteem in many women (Bordo, 1993), but women with disabilities may be 53 impacted more by these images. Adolescent girls with disabilities have reported significantly higher use of laxatives, diet pills, and vomiting for control of body physique (Neumark-Sztainer, Falkner, Beuhring, & Resnick, 1998). Moreover, in a study of the gender differences between young men and women with cystic fibrosis, girls were found to be highly concerned with meeting normative definitions of femininity (Willis, Miller & Wyn, 2001). The young women were less active, ate less, and had higher mortality rates than the young men. The women placed normative gender expectations above participating in practices that would promote their health. For example, the girls felt being thin was a good even though it was due to a mal-absorption of nutrients related to their disease process so they did little to correct the problem (Neumark-Sztainer, et al.). For women with mastectomies due to breast cancer, normative evaluations of the female body led many to choose reconstructive surgery although few found it satisfying and it placed them at risk of surgical complications (Kasper, 1995). The practices used to attain the feminine image may be in conflict with the practices needed to maintain health when living with a disability. The cultural images of women with disabilities may also impact interactions with the health care system. Studies have reported that women with disabilities do not receive adequate preventive and reproductive health care (Coyle & Santiago, 2002) with many reporting multiple barriers to an examination (Gans, Mann, & Becker 1993). Providers have been described as acting surprised when women with disabilities report their level of sexuality (Becker, Stuifbergen, & Tinkle, 1997). Furthermore, when a disease has been 54 diagnosed predominantly in the female body, its existence has been questioned as a valid diagnosis (e.g. chronic fatigue syndrome and fibromyalgia) (Thorne, McCormick, & Carty, 1997). Negative cultural images of women with disabilities may have influenced which disorders providers screen for and how they offer services. Human Agency Human agency is concerned with the ability to adjust over time (Elder, 1994, 1998; Giele & Elder, 1998). Adjustment is a process of living life and interpreting the experiences in order to gain meaning from them. The meaning gained is applied to perceptions of changing bodies and roles within society over time. The meaning of the changing body and society influence how the person responds to the change. The ability to adjust to the changing body and the changing socio-cultural environment is an essential part of aging. It has been documented since the 1950s that women may have difficulty adjusting to disability. Watt (1955) found that women had more difficulty adjusting to disability when they had very little purpose in life or needed something to do. At that time, when men were more preoccupied with careers, it was suggested that therapists provide women with hobbies to distract them from their physical complaints. In more recent studies, men have been found to have higher levels of acceptance of disability than women (Hampton & Crystal, 1999). For women, the severity of the disability has been less important than the ability to perform an expected activity (Nosek, Howland, Rintala, Young & Chanpong, 2001). The inability to perform valued activities and feeling stigmatized was 55 reported to lower the self-esteem of women with disabilities and subsequently influence her ability to perform social roles (Nosek, et al., 2003; Nosek et al. 2001). The Timing of Lives Events are interpreted depending upon when they occur in the sequence of life (Neugarten, 1968). When disability happens to a child, the reaction interpretation of the disability is different than when it occurs to an older person (Antonak & Livneh, 1995; Livneh, 2001). In a study of 1,266 persons in the U.S. with disabilities, the timing or onset of the disability affected the acceptance and adjustment to the disability (Li & Moore, 1998). In a study of young persons with spinal cord injuries age 15 to 29 years, the spinal cord injury affected their body image and left them preoccupied with being valued. They engaged in efforts to appear and to function normally for their age (Dewis, 1989). This indicated the importance of affiliation within the cohort. Timing of events is difficult to interpret with cross sectional data and often requires retrospective or longitudinal evaluations. For instance, in a study of impairment outcomes based upon timing of disability, women less than 60 years of age at onset of stroke were more likely than women over 60 years of age to have poor adjustment to stroke-related disability (Campbell, 1994). This may be due to age or it may be due to the characteristics of those born into cohorts prior to, as opposed to after, 1934. Researchers must be careful when comparing characteristics related to age in cross sectional studies to avoid confusing age effects with cohort effects. 56 Linked Lives People are linked to one another in familial and social experiences. These linkages can provide or prevent opportunities that enhance quality of life. The importance of relationships while aging with disabilities has been emphasized in the literature. Kemp (1999) reported a positive correlation between maintaining active community ties and forming a positive quality of life throughout the life span for those with spinal cord injuries. Moreover, in the ethnographic/phenomenological autobiographical work of Frank, (2000) the participant had a positive body image despite having no arms or legs. She had two reoccurring worries of not paying rent and being unable to find a job because it would result in entering a nursing home, giving up her transportation, and losing autonomy. She also required more intense bodily interaction due to needed support from others. This study illustrated that women with disabilities require varied levels of interdependence in order to remain independent, and the risks of losing support is high. Women with disabilities can be vulnerable within their interactions due to unequal power distributions that may limit life choices as they age and put them at risk for poor health outcomes. Studies have shown abuse among women with disabilities to be different than that experienced by women without disabilities (Curry, Hassouneh-Phillips & Johnston-Silverberg, 2001; Watson-Armstrong, O'Rourke & Schatzlein, 1994; Young, Nosek, Howland, Chanpong, & Rintala, 1997). Abusive interactions have included dismantling equipment, threats of abandonment, theft, sexual molestation, medication over dosage, and physical 57 abuse (Powers, Curry, Oschwald, Maley, Saxton, & Eckels, 2002). Partners, family members, and paid and unpaid caregivers have perpetrated the abuse against these women. Women with disabilities have reported that they stayed in abusive relationships longer than women without disabilities (Nosek, et al. 2001), and minority women with disabilities have reported more abuse from family members due to their higher use of unpaid familial caregivers (Powers, et al). The type of interactions women with disabilities have with family can influence their life course and put them at risk for poor adjustment. For instance, marital status has been a predictor of positive health outcomes, and men with disabilities marry more often then women with disabilities (American Association of Neuroscience Nurses, 2001; Brown & Giesy, 1986). Women with disabilities have had higher rates of divorce then women without disabilities and men with the same disabilities (American Association of Neuroscience Nurses). When disability occurs after marriage, women with disabilities experience guilt about not taking care of their able-bodied husbands (Parker, 1993) despite evidence that husbands of women with disabilities had fewer burdens related to care giving than wives of men with disabilities (Bull, 2001). Moreover, in a study of mothers with disabilities, concern for how their disability affected their children was predictive of higher levels of depression. Interestingly, the depression was mediated by perceptions of higher social support (Harrison & Stuifbergen, 2002). No studies found addressed the health outcomes of women who never marry or never had children. 58 Provider relationships have impacted the ability of women with disabilities to age without secondary conditions and may have limited the opportunities they have had in life. Studies have reported that women with disabilities do not receive adequate preventive and reproductive health care (Coyle & Santiago, 2002), with many reporting multiple environmental barriers to an examination by a physician (Gans et al., 1993). Providers have been described as acting surprised when women report being sexually active, and stereotypes may be responsible for the inadequate reproductive care provided (Becker et al., 1997). In a study by Nosek & Howland (1997), 38% of the women with disabilities surveyed reported they had been refused treatment solely due to their disability. Women with disabilities also qualify for disability insurance less frequently then men (Baldwin, 1997). Providers may not offer women with disabilities services they do not understand the need for in the women's lives. Summary Studies have provided evidence that the elements of the life course paradigm--human agency (Nosek, et al., 2003; Nosek, et al. 2001), timing of events (Dewis, 1989; Li & Moore, 1998; Livneh & Antonak, 1995), linked lives (Coyle & Santiago, 2002; Parker, 1993), and lives in time and place (Goffman 1963; Murphy, 1987; Murphy et al., 1988)--are highly applicable to the life course of persons with disabilities. The research supports the use of this paradigm in women with disabilities. The extant research cited, however, used cross sectional designs with samples of persons from varied cohorts without analyzing the affects of the social, historical, and cultural context. Without data that 59 longitudinally tracked women with disabilities over the past 50 years, a retrospective study that incorporates the full life course is needed. A qualitative design that allows for the exploration of the lived experience within the historical, social, and cultural context is the most appropriate design to explore the life course. Polio will provide the best exemplar of aging with disability at this point in time (Alexander, 1990). SUMMARY Five major areas of research were reviewed: the meaning of aging, studies of aging women, aging with disability, aging with polio, and women aging with disability. This review indicated that further research was needed on the experience of women aging with disabilities. Without understanding their experiences with aging, their lives may be interpreted as unsuccessful based on the values of those without impairments. Although researchers have begun to explore aging with disabilities the work has been primarily descriptive and focused upon impairments, secondary conditions, and co-morbid problems. Those studies that explored the issues of aging with a disability further did not explore women's issues. Women aging with paralytic polio represented an exemplar of aging due to the commonalities experienced by many persons with disabilities. The life course paradigm offers a framework from which to begin that exploration. 60 Chapter 3: Methodology The methodology of a research project gives reason for the choices of research methods used throughout the investigation; it guides the investigator's decisions on how to achieve the purpose of the study. The purpose of this study was to explore the meaning of aging for women with childhood onset disability. The central guiding question was "What is the meaning of aging for women with childhood onset disabilities?" This question was answered with a qualitative design that consisted of interviews, field notes, life course charts, and specified demographic information. The reason for the methods used in this project was justified by the methodology; the methodology chosen was hermeneutic phenomenology within the philosophical perspectives of Friedrich Schleiermacher, Wilhelm Dilthey, Hans-Georg Gadamer, and Edmund Husserl. The following chapter describes the methods used throughout the study as guided by the methodology. The philosophical perspective, the research design, and the details of the methods chosen to answer the research question are discussed. The chapter concludes with a description of researcher bias and study limitations. PHILOSOPHICAL PERSPECTIVE The founder of philosophical hermeneutics was Friedrich D. E. Schleiermacher (Mueller-Vollmer, 1985); therefore, this chapter begins with the salient aspects of his work that apply to this research. This is followed by a discussion of Dilthey's, Husserel's and Gadamer's contributions. 61 According to Schleiermacher (1985), philosophical hermeneutics was concerned with the art of understanding written words, which represented the thoughts of another person; language represented thoughts. The language and the person, who spoke, were tied together in shaping both thought and language. In other words, people used their native language to express their thought but the thought was bound and shaped by the language. Understanding occurred by examining both the psychology behind the person speaking and the specifics of their spoken language. Schleiermacher described two types of interpretation used together to achieve this type of understanding: grammatical and technical. First, grammatical interpretation, according to Schleiermacher (1985), began with the knowledge of the language common to the author of the statements and to the public to which the statements were intended (Schleiermacher, 1985). Second, grammatical interpretation was grounded in an understanding of the whole. In other words, each word could be understood within the context of the other words, as well as, the context of the entire document. Schleiermacher (1985) described technical interpretation, the second type of interpretation, as the understanding of the author's style. Schleiermacher stated that "in technical interpretation the unity of the work, it's theme, is viewed as the dynamic principle impelling the author, and the basic features of the composition are viewed as his distinctive nature, revealing itself in that moment." (Schleiermacher, 1985, p.94). By seeking to understand the spoken or written word, the person's thoughts were sought because through the person's language 62 his or her ability to think took shape, and it was through the person's style that the person shaped the meaning of his or her words as a whole. The style of the person could be understood through the commonalities the person possessed with other people. In other words, it was assumed that people share common experiences that others could relate to. The commonalities allowed comparisons with the author and others who were the intended audience. For understanding to occur, one must know "who these people were and what affect these passages were to have on them" (Schleiermacher, 1985, p. 96). Understanding for Schleiermacher, however, was an internal knowledge without form as a research methodology. Wilhelm Dilthey advanced hermeneutic philosophy towards a research methodology. Schleiermacher's hermeneutic philosophy was interpreted and advanced by Dilthey whose effort was a reaction against positivism. (MuellerVollmer, 1985). Dithey argued that the assumptions used to understand the natural sciences could not be used to understand humans. For instance, it was not our biology that defined what it meant to be a woman. It was our consciousness of being a woman in the world in time and space that gave meaning. Dilthey was concerned with the "objective value of the mind constructed world [through] which emerge experience" (Dilthey, 1985, p. 149). Dilthey wrote, "It is in the life actually lived that the reality known in the human studies lies." (Dilthey, 1985, p. 150). Dilthey's work helped advance the human sciences toward a hermeneutic research methodology. Dilthey (1985) wrote that hermeneutic understanding occurred within the mind-constructed world. The mind constructed world was an interaction of the 63 lived experience, the insight into the mind, the understanding of other people, and the understanding of the historical community. Dilthey recognized that part of "understanding was irrational because life is irrational" (1985, p. 162). There are limits to the application of logic in understanding the lived experience. Some words cannot be understood based upon the rules of grammar. The words are both determinant and indeterminate; therefore, the words must be understood within the context of the whole. Hermeneutical understanding was an inductive process that linked the parts to the whole. This included the historical context of the text, as well as, the lived experience all set within the mind-constructed world. The understanding gained from hermeneutic methods contributed to knowledge of other people and their experiences. Ditlhey's hermeneutic methodology was based upon the interaction between the experience of living and understanding oneself in time (Dilthey, 1985). Understanding occurred as the person was conscious of their experiences in time. Time unified the experience. Past experiences were momentary abstractions brought to consciousness, while present time did not exist to conscious thought because "what we experience as present always contains memory of what has just been present." (Dilthey, 1985, p. 150). Being conscious of the abstractions of the past unifies and synthesizes the lived experience. The conscious experience of the self in time could be persistent or it could change (Dilthey, 1985). Each experience the person had was related to the self, and the self was made up of conscious experiences. It was possible to be conscious of change and persistent qualities in the self as consciousness of the 64 abstract past was altered. In other words, the abstract recollection of the past self as a whole could be altered or persistent. Dilthey explained, We experience persistence when we return to what we have just seen or heard and find it still there. We experience change when particular qualities of the composite whole have been replaced. The same applies when we look into ourselves, become aware of the self which experiences duration and change, and observe our inner life. (Dilthey, 1985, p.151). Next, Hans-Georg Gadamer (1960/2000) built upon the aforementioned philosophical works, but ultimately maintained that no methodology within the human sciences could produce absolute truth. All written word was situated within a dialogue that started before the text was read and that continued afterwards. The reader entered into a dialogue with the author when the text was read. The best that could be achieved was an understanding of the text by moving the text, or the question put to the text, into the reader's context for understanding. According to Gadamer, the understanding was more complete when the reader understood the social and historical context of the author and a shared horizon for understanding was achieved. This was not a relativistic historical understanding because the meaning was shared, and the value of the understanding was found in its usefulness (Grondin, 1994). Finally, aspects of the philosophy of Edmund Husserl were critical in this research. Specifically, Husserl's (1999) work on perception and the body. According to Husserl (1999) consciousness was always of something else. When a person was conscious, his or her consciousness was directed toward something, which was referred to as intentionality. understand human consciousness. 65 It was the task of hermeneutics to It was through the body that the nature of being conscious was understood (Husserl, 1999). In other words, the body was the medium for all interaction with the world. The body was described as the sense organ through which consciousness occurred. The body, however, provided a subjective account of the world. Understanding must come through multiple perspectives in order to gain a more complete view of the experience or phenomenon under consideration. According to Husserl, "only through mutual understanding is there the possibility of knowing that what others see is what I see." (1999, p. 172). Husserl's description of the body and consciousness were important for understanding the meaning of aging for women with disabilities because his philosophy provided a means for understanding how the impaired body might affect conscious perception of aging. For Husserl, the body, defined as the organ of consciousness, was the means of sensing and understanding the world. All sensation was brought together into a nexus, the body the center of orientation toward the world. It was also the organ of will because the body was also involved in conscious functioning within the lived world (Husserl, 1999). More specifically, the sensing function of the body was involved in feelings of pleasure, pain, and fatigue, which all had a physical means for being made aware of by the woman. These sensations formed the base from which the will and desire of the will to act were fed. The woman could not be distanced from her body because it was the organ of all lived experience throughout time. This formed the philosophical basis for this hermeneutic phenomenological study. 66 One potential philosophical conflict could be mentioned regarding the use of socially constructed concepts of disability and gender with a hermeneutic phenomenological study. Typically social constructionists reject the use of essential truths. I would like to argue that there is no basis for conflict. First, there was no philosophical claim made for absolute truth. Second, the investigation of essences shared between culturally and historically situated individuals was not the same as an essential label or stereotype culturally identified with a person based upon their gender or disability status (G. Frank, personal communication, Jan, 5 2003). In fact, Kahn (2000) wrote that H/P was a non-essentialist methodology that viewed the essential themes as contextualized meanings that depend upon the shared horizon, not some universal truth or stereotypical essentializing. This was also consistent with Simone de Beauvoir's, the existential feminist philosopher, writings about the experience of women (de Beauvoir, 1952/1974, Tong, 1998). Moreover, Cohen (1987) wrote that Husserl's descriptions of essences, ideal types that correspond to laws, were important to the philosophy but not important to the phenomenological research tradition, which was more interested in case experiences. In this research, women with common life experiences shared experiences with the phenomenon of aging that were viewed from their perspectives. The commonality in their experiences emerged from their stories. RESEARCH DESIGN This is a qualitative study of aging for women with childhood onset paralytic polio. Hermeneutic phenomenology (H/P) was chosen as a methodology 67 to give the phenomenon of aging in women with childhood onset disabilities a fuller understanding (Cohen 2000; Spiegelberg, 1960; Toombs, 2001). It was the goal of this H/P study to understand the intent and impact surrounding the experience of aging with impairment (Spiegelberg, 1960; Toombs, 2001). Therefore, when questions about the changes associated with aging were asked, the women were free to speak of experiences and associated feelings that indicated what aging meant to them. And when the women were asked how they adjusted to these changes, they were free to tell stories about how the phenomenon impacted their lives. Hermeneutic phenomenology was consistent within the overall design of this life course study. It has been used with other life course studies (Tierney, 2000), and H/P analysis has been described as a natural tool for use with the life course paradigm because life course descriptions are essentially phenomenological--stories of the lived experience (Frank, 1979, 2000). The H/P analysis allowed for interpretation of the life course placed into text format for analysis and interpretation of meaning (Frank, 1979, 2000). This way the lived experience, as it related to the phenomenon of interest, emerged from the stories (Frank). After all, it was not the purpose of this study to test a life course theory or hypothesis. The purpose was to understand the experience of aging. The methodology called for interviews designed to draw out stories of the meaning of aging, which included changes associated with aging and how women adjusted to the changes. The four elements of the life course paradigm were used to bring shape to the study, which was consistent with the H/P emphasis on 68 understanding the cultural and historical context of the group (Cohen, 2000). Components of the life course paradigm, which included the human agency, the surrounding relationship, human agency issues, and the socio cultural and historical time period were understood through conducting interviews and writing field notes of observations. The goal was to elicit a story about the life course for each woman; their stories were analyzed to understand the meaning of aging. Themes related to the influence of being women within the historical and cultural time period emerged as the stories were analyzed. METHODS The methods section includes the participant selection strategies and the data management strategies used in the study. The following sections outline the details of the strategies used to select those who participated in the study. The characteristics of the final sample are also described. The section is followed by the data management strategies, which includes a description of the data collection and the data analysis procedures. Participant Selection Strategies Participant selection strategies were the procedures used to gain the sample used for the study. The participant selection strategies included the sample selection, sample size, sample characteristics, recruitment, and human subject protection. Sample Selection The sample selection was based upon the following inclusion criteria: All participants had physician-diagnosed paralytic polio before age 14. 69 All participants belonged to the age cohort between 55 to 65 years. All participants were living in their community, not an institution, within the United States. All participants had a physical impairment related to paralytic polio. All participants were able to speak English. All participants were female. The sample selection also included four women who met the aforementioned criteria except two women were less than 55 years of age and two women were more than 65 years of age. These four negative cases allowed for comparisons between cohort experiences but were not used in the final H/P analysis. Only women were included in the study in order to capture their unique experience of aging with impairment. The social, historical, and cultural experiences of women may have been different than for men, thus the unique experiences were studied independently, not as a combined experience that could have neglected the unique experience of women. This design allowed for the understanding of how the women perceived their gender and its affect on the changes associated with aging. The main concern for participant selection was making sure the women experienced the phenomenon of concern (Creswell, 1998), aging with impairment related to childhood onset polio. The majority of the women interviewed had aged with impairment related to polio since childhood. Three women who were interviewed did not report the experience of aging with impairment. The women 70 told stories of having a full recovery from the affects of paralytic poliomyelitis; therefore, they were excluded in the final analysis. The women included in the final analysis experienced polio at the height of the polio epidemic and lived through similar social changes within the United States. All of the women interviewed resided in one of 18 different counties within the state of Texas; 21 of the women grew up since birth in Texas. Moreover, the timing of their impairment was during childhood, thus consistency in timing of impairment and its effect on aging was obtained. This provided a solid basis for commonality of experiences. Sample Size Thirty-two women participated in the study. For the final analysis of the experience of aging with childhood onset disability, 25 women were selected from the 32 interviewed. The four negative cases and the three women without residual polio related impairment were excluded. The 25 women included in the final analysis were more than sufficient to provide saturation and redundancy of data (Rubin & Rubin, 1995). Steeves (2000) wrote that prior studies and empirical knowledge drive sample size selection. Kahn (1999) reached saturation, using a similar design with elderly individuals, after 15 intensive interviews. Moreover, in this study multiple interviews were done where the women talked at length about their experience and observational field notes were written, which resulted in a large amount of data. Based upon the amount of data collected from the women there was no need for a larger sample 71 (Morse, 2000). It was estimated that no more than 15 women would be needed for the study; the 32 women who participated in the study and the 25 used in the final analysis were more than adequate to provide an understanding of their experiences. Sample Characteristics Selected characteristics of the 32 women who participated in the study are in Table 8. The mean age of the women was 59.8 years. Seventy-eight percent were Anglo, 16% were Hispanic, and 6% were African American. The majority of the women was married (63%) and had children (69%). A large percentage was unemployed due to disability (31%) or retired (41%). Over half of the sample was college educated; 34% had a bachelor's degree, 16% had a master's degree, and 13% had a PhD. Selected characteristics of the 25 women who were included in the final analysis are in Table 9. The mean age of the women was 59.4 years. Eighty percent were Anglo, 16% were Hispanic, and 4% were African American. The majority of the women was married (64%) and had children (68%). A large percentage was unemployed due to disability (40%) or retired (36%). Over half of the sample was college educated; 32% had a bachelor's degree, 12% had a master's degree, and 8% had a PhD. For the 25 women included in the final analysis, a more detailed description will be provided. The year they contracted polio was from 1942 to 1955. At the time of their infection, their age ranged from 3 months to 13 years. 72 The mean age at the time of infection was 5.25 years; the mode was 5 years. The women were hospitalized during their acute infection from 0 to 72 months. The majority reported they had spinal paralytic polio (68%). At the time of the infection, 68% (17) reported that their extremities were paralyzed, 28% (7) reported their entire bodies were paralyzed, and 4% (1) stated it was mainly in the back and spine. Over the course of the interviews the women described their impairment severity and its affect on their lives. The types of decline experienced were listed and described in Table 10. The majority explained that they had a life long moderate impairment with a severe decline (44%). Eight women (32%) described severe life long impairment that only worsened over time. One (4%) woman described mild life long impairment with mild decline, and 5 (20%) described life long mild impairment with a moderate decline. 73 Table 8: Sample characteristics of the 32 participants interviewed. Age Mean 59.81 Std Dev. 5.6 Marital Status Ethnicity Anglo 25 (78%) Latina 5 (16%) African American 2 (6%) Bulbar 1 (3%) Bulbar-Spinal 8 (25%) Spinal 21 (66%) Unsure 2 (6%) Children Type of Polio Employment Age of Polio Onset Mean 5.33 Std. Dev. 3.94 Range: 3 months to 13 years Post Polio Married: 20 (63%) Single: 6 (19%) Divorced: 3 (9%) Widowed: 2 (6%) Separated: 1 (3%) Yes: 22 (69%) No: 10 (31%) Retired: 13 (41%) Unemployed due to disability: 10 (31%) Employed: 7 (22%) Unemployed: 2 (6%) Yes: 25 (78%) No: 7 (22%) Length of Time Hospitalized During Infection Mean: 6.98 months Std. Dev. 14.54 Range: 0 to 72 months Current Assistive Device Use Yes: 26 (81%) No: 6 (19%) 74 Table 9: Sample characteristics of the 25 participants included in the analysis. Age Mean 59.44 years Std Dev. 3.02 Range 55 to 65 Marital Status Ethnicity Anglo 20 (80%) Hispanic 4 (16%) African American 1 (4%) Bulbar 1 (4%) Bulbar-Spinal 6 (24%) Spinal 17 (68%) Unsure 1 (4%) Children Married: 16 (64%) Single: 5 (20%) Divorced: 1 (4%) Widowed: 2 (8%) Separated: 1 (4%) Yes: 17 (68%) No: 8 (32%) Retired: 9 (36%) Unemployed due to disability: 10 (40%) Employed: 4 (16%) Unemployed: 2 (8%) Yes: 22 (88%) No: 3 (12%) Yes: 22 (88%) No: 3 (12%) Type of Polio Employment Age of Polio Onset Mean 5.24 years Std. Dev. 3.95 Range: 3 months to 13 years Mean: 8.44 months Std. Dev. 16.11 Range: 0 to 72 months Post Polio Length of Time Hospitalized During Infection Current Assistive Device Use 75 Table 10. Levels of impairment reported by women in the final analysis. Experienced by 8 participants. A severe residual impairment that worsened with age. The women were unable to walk or walked minimally with assistive devices. By later adulthood they were dependent upon others for most activities with some discomfort. Experienced by 11 participants. A moderate impairment from polio that worsened as they aged with a degree of dependency upon others. The women were walked with assistive devices but by later adulthood were dependent upon assistance for activities with discomfort. Experienced by 5 participants. A mild impairment from polio that worsened as they aged but did not cause dependency upon others. The women were able to walk without assistive devices but were restricted in some activities. By later adulthood, they were in need of assistive devices or experiencing discomfort. Experienced by 1 woman in the study. A mild level of residual impairment from polio with mild levels of decline that did not cause dependency upon others for assistance. The woman described an impairment related to polio that did not affect her ability to walk or do other types of activities. By later adulthood she had experienced some discomfort and decreased ability to function as she had most of her life. Life Long Severe with Decline Life Long Moderate with Severe Decline Life Long Mild with Moderate Decline Life Long Mild with Mild Decline 76 Eighty-eight percent of the 25 women indicated they had post-polio syndrome and 88% were currently using some type of assistive device such as a scooter, electric wheelchair, or brace. The women also had a high number of comorbidities and secondary conditions. Only two women stated they had no comorbidities or secondary conditions; 52% had more than three co-morbidities or secondary conditions. One woman reported as many as seven co-morbid problems. The most frequently mentioned co-morbidities and secondary conditions were hypertension, diabetes, arthritis, sleep apnea, and osteoporosis. Other problems mentioned were cancer, pneumonia, depression, high cholesterol, and thyroid abnormalities. Experiences with abuse were also common. Although the women were not directly asked if they were abused, of the 25 women included in the final analysis, 64% reported some type of abuse in their life time. Childhood abuse, which included physical, emotional, and sexual abuse, was reported by seven (28%) of the women. Adult physical or sexual abuse was reported by five (20%), and four (16%) reported both adult and childhood abuse. Only nine (36%) of the women reported that they had not been abused in their lifetime. Recruitment The women were recruited by one of three methods. First, letters explaining the study were mailed to 12 women who had participated in a study of health promotion for persons with chronic disabling conditions and met the 77 inclusion criteria. The women were asked to address an enclosed stamped card if they were interested in being contacted about the study. Second, brochures explaining the study were disbursed at support group meetings either by the principal investigator or another polio survivor. If the women at the meeting were interested in the study they were asked to complete a card with their contact information on it. Third, women known to the investigator to have had polio and be interested in the study were encouraged to provide contact information. From these efforts, 41 women replied that they were interested in the study. Seven of the women were excluded because they did not meet the inclusion criteria: one did not have paralytic polio as a child although she reported post polio syndrome as an adult, and six women did not meet the age requirements. Two other women contacted me after saturation had been obtained and I was no longer recruiting subjects. Efforts were made to recruit a larger African American sample. An African American woman known to have had polio contacted people within her community to gather interest. She was able to locate one other woman, who was interviewed. This woman said she participated because she knew I needed participants to finish my degree, but she said polio was not a problem in her life or something she thought much about. Three predominantly African American churches within a central Texas community were contacted about the study. Brochures and contact information were sent to them, but I received no response by potential participants. Contact was made with a woman who worked at an African American community center. She was able to think of three women in her 78 community that had polio, but none of the women were interested in the study. Finally, I contacted an African American woman who worked within a community working in the public health services. She was able to locate one woman, who again was not interested in the study. If the women consented to be contacted and met the inclusion criteria, I contacted them and explained the study in detail. If the women were willing to be interviewed, a meeting was scheduled at their convenience at a mutually acceptable time and place. Prior to the meeting a demographic sheet and a life course chart was mailed to the participant for them to complete prior to the first interview. Most interviews were completed in the women's homes, but one participant was interviewed at a church, two participants were interviewed in restaurants, and one participant was interviewed at the School of Nursing. A hand written thank you note was mailed to each participant after each interview. Human Subjects The proposal was sent to the Departmental Review Committee (DRC) of the School of Nursing and the Institutional Review Board (IRB) at the University of Texas at Austin for approval. No informants were involved in the study prior to the completion of the DRC and IRB review and approval. The IRB approval form and the approved informed consent are in Appendix A. Informed consent was obtained from each participant in the study. No participants were excluded based upon race, ethnicity, or religion. No negative outcomes were reported by the participants in connection with this study. The participants were encouraged to terminate, reschedule, or drop from the study 79 without explanation at any time they felt unable to participate for any reason. Although several participants rescheduled interviews, none of the women dropped from the study. Each participant was informed at each interview session that they could refuse to answer any question or refuse to talk about any topic. The women spoke freely and agreed to be audio taped. The participants were told the interviews would end if the participant appeared to grow fatigued, which occurred during one interview. No invasive procedures were included in the study. Confidentiality was maintained for the subjects by changing their names to pseudonyms--non-identifying names. The pseudonyms were used in all written records. Only the researcher and supervising professor had access to the actual names, addresses, and phone numbers of the participants. These remained in a locked cabinet. These will be destroyed 5 years after completion of the data analysis. Participants received $10.00 per interview as a reward for participation in the study. They were not coerced to participate in the study. Many stated they gained from sharing their stories, and many were pleased to contribute to the existing knowledge base. Several women reported that they gained some therapeutic benefit from talking about their lives. Data Management Strategies The data management strategies included the data collection and data analysis procedures. The data collection procedures included the interviews, demographic profiles, life course tables, and field notes. The data analysis procedures included the procedures for data analysis and bias control. 80 Data Collection An underlying premise of this research was that people try to make meaning of their experience and the meaning made would be contained in their stories (Kahn, 2000). Consequently, the aim of the interviews was to bring out stories about the lives of the women (Kahn, 2000). The women were asked to reflect upon their lives and the important things that had happened prior to the first interview. Since the study was of the changes associated with aging and subsequent adjustment, a current and a retrospective approach was taken. (See Appendix B for the interview questions). At the first interview, the women were asked to begin with their first memories and tell what had happened. The women were then told to work forward reviewing the memories that were most salient to their lives. At the subsequent interviews the women were encouraged to continue their descriptions of their lives up until present. Next, the women were asked about relationships that influenced their lives, about what meaning meant to them, and what it meant to be a woman. All the interviews were transcribed verbatim. Two to four interviews were required to cover the content in the interview questions. Two participants required two interviews, one participant required four interviews, and the remaining 22 women required three interviews. It was recommended that multiple interviews be done for the purpose of gaining the trust of participants so they would engage in open discussion (Steeves, 2000). The time between the two to four audio taped interviews also gave time to review and research prior interviews for clarification prior to the next interview. Interviews 81 were rescheduled within 1 to 8 weeks of the prior interview, which gave time to reflect upon the comments made in the previous interviews. Besides the interviews, data was collected with demographic sheets, a life course review table, and field notes. Demographic data was collected prior to the first interview. (Appendix B) The life course review table served as a tool to help the participant remember events prior to the interview. (Appendix B) According to Clausen (1998), these charts were useful way of obtaining life course information because it allowed for the appraisal of the social and historical context by the researcher as well as the participant. The table was sent prior to the study and reviewed with the participant at the first interview session. If it was not completed, the interviewer and participant completed and discussed it at the first interview. This table was a prompt to help the participants think of life course events that were meaningful to them. Field notes were written to enhance the quality of data obtained (Emmerson, Fretz, & Shaw, 1995; Kahn, 2000). Information such as dress, body language, assistive devices, and environmental details, as well as theoretical observations and documentation of self-evaluations of the interviews were added to the field notes. They also included descriptions of pictures that represented memories of the past. The field notes served as a record of continued evaluations and an on going reflective dialogue that helped with understanding when saturation and completeness were reached (Emerson, Fretz & Shaw). 82 Data Analysis The following section was written to describe the data organization, analysis, and bias reduction used in the study. The data organization for the study was the way the data was handled after each interview was completed. The interviews and field notes were transcribed as soon as possible after the interview by a professional transcriptionist and the researcher. This produced nearly 4,000 pages of double spaced text. Next, the data were checked for accuracy by listening and comparing it to the transcribed notes. Transcribed notes and collected demographics were kept within a locked cabinet at all times except when being analyzed. The analysis was begun with a hermeneutic philosophical attitude toward what was considered data and how to understand the data. The hermeneutic phenomenological analysis, which was concerned with the correct interpretation of human expression (Polkinghorne, 1983), was begun by recording what was communicated in verbal and non-verbal form into a permanent written record or a text (Steeves & Kahn, 1995). The text was considered the "working ground for the study of socially constructed meaning" (Steeves & Kahn, p. 185). In other words, the text was the basis for understanding the meaning the women were trying to convey about aging. Understanding was the comprehension of the meaning that went beyond logical analysis of the text (Polkinghorne, 1983). The analysis occurred within the hermeneutic circle; the analysis was a process of going from the parts to the whole and back again to understand what was being conveyed. The analysis was a mental, integrative process of bringing in the whole 83 and then the parts in a continual movement back and forth. The understanding appeared in an unspecified, tacit sense (Polkinghorne, 1983). Hermeneutic interpretation was possible because the text was supplying a meaning to the reader--it was not a non-intentional group of words without a reader (Crotty, 1998). The women spoke to me as their audience in order to convey meaning. It was more than semantic meaning, but the semantics were indicative of meaning. Determination of the meaning was more than relating the work to a theory, such as life course or any other type of gerontological or disability theory. Hermeneutic interpretation was a process of creating knowledge that comes from thinking something through and relating it to a sense of what was plausible (Crotty, 1998). This was the philosophical starting point in which the analysis was based. Hermeneutic phenomenological studies rely on the reflections of the researcher involved in the study; therefore, the reflections were part of the data. Kahn (2000) recommended that researchers critically reflect upon assumptions, preconceptions, and prejudices prior to and during the study. The analysis contained the bracketing of personal experiences and prior thoughts in regard to women aging with disabilities. The bracketing of these critical reflections was an important continual process throughout the analysis (Creswell, 1998; Spiegelberg, 1960). Data analysis continued in the field with interpretations recorded in the field notes. Field notes were incorporated into the analysis process. After the data was transcribed and checked for accuracy, the data were read and reread. This 84 immersion within the data with reading and rereading helped to create the initial interpretations, which were entered into field notes. This was done before and after each interview. This was a cyclical interpretation of the meaning of the experience, which was consistent with the hermeneutic circle. Thematic analysis was used to answer the specific aims, and was based upon the recommendations of Cohen, Kahn, & Steeves (2000). The text was read and reread to verify if it was representative of the experience. Those women who did not have lifelong impairments were then excluded from analysis. Next, the transcripts were read line-by-line and hand coded with a pencil for specific phrases that indicated a salient aspect of the experience. The thematic analysis then proceeded in the following steps, but in a non-linear fashion. Line by line coding was done by labeling phrases with code names. These were small pieces of information that related their perceptions of human agency, relationships, and events in time and place. Interview sections were cut from the text and grouped based upon childhood, adolescence, young adulthood, middle adulthood, and later adulthood or now. Like code names from each area of the paradigm were placed side by side for further analysis and rules were made as to how they were related. These were categories. Categories were placed together for further analysis to discover the complex interrelations of the content drawn out from each element of the paradigm. Rules were made as to how they interrelated and called themes. 85 Exemplars were chosen to represent the themes. Exemplar themes were connected throughout the life course to tell the story of how the meanings changed over time within each period of their life. This change over time in meanings represented aging. Exemplar themes were pulled to express what the meaning of aging was to the women and how the meaning of their gender influenced how they aged with a disability. Researcher Bias As recommended by Kahn (2000), biases were bracketed prior to the start of the study of aging in order to understand my preconceptions prior to interpreting the experience of the participants. A journal of the study was maintained to document all research project decisions for continual tracking. It contained all preconceptions and prejudices as well as a log of all research project decisions. Study Limitations The study design was limited by its restriction to the study of women aging with the effects of paralytic polio. The experience of men aging with the effects of paralytic polio could not be determined from this study. Moreover, the effects of other types of impairments may be different then the effects of polio. The physical changes associated with aging with polio may create a varied experience then what other women with impairments may report. There may also be social differences in women with polio as compared to women with other types of disabilities. Women aging with polio may be more educated and have more 86 resources then women with other types of impairments. The effects of aging with other types of impairments should be investigated further. The study was limited by the low number of minority women included in the study. Although considerable effort was made to recruit African American women, only two women participated. This was similar to the demographic profile for paralytic polio, but further study should be done to understand their experiences with disability. The cultural and historical meaning of being an African American woman with a disability could not be understood from this study. Although five Hispanic participants were included in the study, more would be needed to do a separate analysis for this group. Generalizing these results is not recommended. Although this study contained more than an adequate sample for understanding lived experience, it does not contain generalizable data. The participants were restricted to women within a narrow age cohort living in Texas. Persons from other age cohorts, men, persons from other cultures, and persons living in other areas of the country may have varied experiences. Summary Hermeneutic phenomenology based on the philosophical work of Schleiermacher, Dilthey, Husserl, and Gadamer provided the groundwork for this study of women aging with childhood onset disability. No other methodology would have allowed for the understanding of the meaning of their lived experience, which was the focus of this research. The methods for answering the research question included in-depth audio taped interviews of 32 women, of 87 which 25 were aging with life long impairment. The interviews of the 25 women aging with childhood onset impairment were included in the final analysis. Analyzed data included two to four transcribed interviews, field notes, demographic information and life course charts. Using hermeneutic phenomenological analysis, themes and exemplars were identified to represent the experience of aging. The study was limited to the understanding of women aging with paralytic polio. Studies that include men, persons with other types of impairments, and a larger number of women from different cultures are needed. 88 FINDINGS Chapter 4: The Life Course The findings of this research are described in chapters 4 and 5. Chapter 4 contains the life course hermeneutic phenomenological description of the meaning of aging. Chapter 5 contains the findings for the three exploratory questions: the exploration of the meaning the women associated with aging, the exploration of how the women adjusted to the changes they associated with aging, and the exploration of how the women's gender impacted their experiences and adjustment to aging. This chapter begins with the life course hermeneutic phenomenological description of the meaning of aging. The experience of aging for women with childhood onset disabilities was interpreted based upon the life course narratives provided by 25 of the 32 participants. For purposes of gaining a coherent understanding of aging produced from the vast amount of text, the life course was broken down into childhood (0 to 12 years), adolescence (13 to 22 years), young adulthood (23 to 34 years), middle adulthood (35 to 54 years) and later adulthood or now (55 to 65 years). Within each period of life, areas of the life course paradigm were used as an organizing framework to give structure to the life course analysis and presentation of findings. The major themes and sub-themes that emerged are presented within each of these periods of life organized around the life course paradigm. These are summarized in Table 11. 89 Table 11: Summary of life course themes Childhood Adolescence Young Adulthood Middle Adulthood With Time the Place Improved Later Adulthood Expecting More from the Time & Place Different Time & Place Environment Events that Things Need Change a to Change Time & Place Feeling Peculiar: Getting Polio Living the Altered Body Conscious of Body's Improvement Conscious of Potential Knowing& Showing Body's Limits Human Agency I Can Achieve Being Aware of Body's Limits Willed to Success but Pushed to Decline Becoming Conscious of Body's Needs Responding to Body's Needs Facing Threats from Increasing Dependency Focusing on the Body Working to do the Simple Things Preserving the Body Conflicts Between Self & Body Families Shape their Children Things Worse than Polio Relationships Finding Voice Proving I Caring for Aging in Can in Parents Relationships Relationships Relating with Interdependent Self 90 CHILDHOOD 1939/1949 TO 1951/1961 A Different Time and Place Many of the women described living in a different time and place as children, which encompassed birth through 12 years of age. The majority grew up in rural Texas; others grew up in metropolitan areas or out of state. Despite the location the women acknowledged the world was different when they were children, and they had been shaped by the time period in which they were born. In other words, they grew up when people did for themselves and they tried to maintain that attitude towards life. As children, they watched Howdy Doody on television or pretended they were Dale Evans and Ginger Rogers. They observed as the iceman put ice in the ice box, participated in air drills at schools, and piled into the back of Dad's pick-up truck to go to the drive-in movie, where no one bought popcorn or drinks. A few women mentioned using outdoor toilets while another was envied because her farm house had an indoor bathroom. As Janice, a 57 year old with polio at age 3 years noted "I am glad I grew up in that era where we didn't have a lot of things. One, because we didn't have a lot of money but also just because it was in the 1950's and 1960's when there weren't a lot of labor saving devices that we have today. Cell phones, cordless phones, computers." These women grew up in a time and place where people physically did for themselves. This was also the time of the polio epidemics in the United States. No one remembered public health warnings about polio, but those who were infected as 91 older children recalled the fear of catching the virus. Joann, a 65 year old who contracted polio at age 12 stated, "I remember it very clearly. It was the year; I guess that would be 1952. I'm not sure. We didn't go out to eat. We didn't do this. We didn't do that because of the scare. I can remember we were at the beach and this fly landed on my glass. I thought oh, if I drink that stuff I'll get polio." Feeling Peculiar: Getting Polio Despite the young age of the participants when they were infected, the majority of women remembered the events surrounding their "getting polio". They described no longer being able to control their bodies. They could not will various parts of their bodies to action. One woman described only being able to move her thumb while another could only move from the left elbow down. They also described feeling hot and having pain in their heads, throats, necks or backs. Charlotte, a 57 year old with polio at age 4 years stated And I remember waking up and having..., the sore throat being much worse. Feeling very hot, just so hot. And I remember trying to call to my dad but it was like a croak. I couldn't get it out. And feeling very peculiar, being 4. I just knew I felt terrible and I was scared. I remember I couldn't get out of the bed, and I remember telling him (dad), `I can't move my legs'. So he kind of moved me around and stood me up, and I just fell right down on the floor. I could not walk. Getting polio disrupted the ability of the self to will the body to action, it disrupted the usual sensory input to and from the body, and subsequently, it disrupted the subjective interpretation of the self as it existed in the world. Lena, a 62 year old with polio at age 10 stated, 92 I was a skater, a biker, a tree climber and so forth, and then all of a sudden you're losing everything. You can't move. I was talking and my mouth was moving but the voice wouldn't come out. I couldn't turn my head. They put you in quarantine where you can't see your parents. You can't see anybody and that... do you know how scary that can be? Descriptions of the disruption of the body, the senses, and the self continued as the women recollected the treatment they received. Overall, the women recalled how one childhood viral infection left them to feel peculiar; they were special, distinctive, and odd. The theme of Feeling Peculiar: Getting polio was broken into two sub-themes: The Initial Treatment for Polio and The Long Term Treatment for Polio. The Initial Treatment for Polio During the initial treatment the women recalled that their bodies were further restrained while their senses were inundated. Their ability to consciously act on their own behalf was not permitted. Attention was focused on their bodies, but that had consequences for the self as the women described feeling uninformed, na ve, sad and afraid. It was also worsened when they witnessed deaths that were never explained to them. Through this experience the iron lung emerged as a symbol of their initial polio treatment experiences. The initial treatment frequently involved seeing a physician who did a spinal tap to diagnose the likelihood of polio or infantile paralysis, as it was occasionally called during that time. Charlotte, a 57 year old that had polio at age 4 years recalled, They held me real tight all around me, and the nurse that was at the head of the table, where my face was down, she held me so hard my face was up into her starched white uniform and I remember that smell so much. 93 But I couldn't breathe. They were holding me too tight. And I thought I was going to pass out or something bad happen to me because I couldn't breathe because she had my face right up into this part, you know, holding me down. After the spinal tap confirmed the diagnosis of polio, all but one of the women were taken from their families and placed into isolation where further treatment was initiated to treat their paralyzed body. In order to relax their affected muscles the women were placed into hot water or covered with steaming hot wool. The fear of drowning caused one woman to cry out for help after being placed in a tub, which was filling up with water, by a nurse who walked away without explaining. Several women recalled the feel and smell of hot wool on their bodies as nurses or nuns applied various treatments to their muscles. Three of the women described the development of boils that needed lancing because their bodies were not being turned while paralyzed. One stated the scars were still present. Martha, a 57 year old with polio since the age of 8 years recalled that While you're in the hospital you get this lovely hot steamy wool, and I mean hot. They had these steamer things they would bring in. Wet wool has a smell like no other. It's stuck in my head because they would either put it down your front side or they would roll you over and put it down your backside so that they could get the heat on the muscles. And then the physical therapists would come in and start doing the muscles leg stretches and all the stretches you could do on your arms. There were grown men in there who would scream and cry from the pain of having your legs stretching. They would have their hand on your knee and then they'd draw up your leg, trying to stretch all the tendons and the muscles and stuff because they'd just be tight. And then they'd work on your feet and pull them forward. It's not pleasant. Like I said, grown men were screaming. During the time of the initial treatment the women described feeling as though the conscious self was isolated, uninformed, na ve, afraid and/or sad. Their body was the focus of care and they experienced increasing amounts of 94 foreign stimuli, which the conscious self could not understand and at times did not try to understand. As Lena recollected: But I could hear my mother's voice. He [dad] parked the car next to the window where I was and my mother got on top of the roof and I could hear her. I remember her calling me. I remember her telling me, "Don't be afraid. We are right outside the window." But still. They were out there and I was in here and I couldn't see them. I didn't know why. I thought I'm going to die. I kept, you know, where are my parents? But nobody would answer you. Nobody would tell you anything. Nobody would explain anything. I kept thinking well, they can see that I'm old enough. I'm no dummy. I can understand. Tell me what`s going on. No. Nobody would tell you. They would just tell you open your mouth and they'd stick the spoon of whatever they were going to give you to eat for breakfast and lunch. Many of the women explained that the treatment they received as children was consistent with the way children were treated in the culture and time period that they grew up. For instance, Kathy, a 62 year old with polio since age 12 years stated, I looked back on it and wondered, wondered why I didn't ask any questions. I just presumed because I was being tube fed. It didn't last long. I just went along. Maybe I was on drugs. I don't know. You didn't tell your kid he was stupid in front of them, you told other people he was stupid. They were quiet people, farm people. Although some women stated they were able to get past the events that occurred during their initial hospital stay, others witnessed events that scared them or changed the way they were conscious of the world. These events were described as being too much for the eyes of a child. For instance, Dorothy, a 62 year old with polio since age 10 years described the death of a child on the bed next to her. "It scared me because I was 10 and she was my age or younger. Couldn't have been too much younger but she was sitting on the bed and she was 95 gasping trying to breathe. I remember seeing her in my mind. I remember her turning dark and falling over. She was dead then." Charlotte, 57 years of age with polio since age 4 years stated that she remembered "seeing terrible sights like, I know there was more than this, but the only one that's vivid is this black man on a gurney with blood all over him. ...My dad took his hat and put it in front of my eyes to try and keep me from seeing it. But it was really frightening." During the initial treatment period the iron lung was described as a symbol of polio, which represented their stimulated but uncontrollable body and their mental isolation, fear, and naivety. Although only two women were placed into iron lungs for therapeutic care, others remembered viewing them, being threatened by them, or seeing others die in them. One participant recalled visiting her brother who was placed in an iron lung and later died. Another recalled walking through the room that held those in iron lungs. She stated that she could recall "that sound, that breathing sound, and seeing those people. They all looked dead to me." The Long Term Treatment for Polio During the long term treatment of polio the women described gaining some control over their bodies and the sensory input was less disturbing then during their initial treatment because their bodies began to be more useful in doing their will. At the very least, the women were given hope that they would be able to function in the world. The treatment continued to be focused on the body, which included often unpleasant experiences with multiple surgeries, but also incorporated teaching them how to use their bodies with various assistive devices. 96 More importantly, improvements in their bodies could be identified as they were encouraged to take control of their bodies. The brace became a symbol for their experiences with the long term treatment of childhood polio. After the initial diagnosis and treatment for polio, the majority of women continued to receive some type of long term therapy and they were monitored by their parents, family physicians, orthopedic surgeons, and/or physical therapists. Some of the women were discharged to long term rehabilitation centers where several philanthropic organizations or private insurance agencies financed their care for extended periods of time. Others left the hospital for home unable to walk, crawling or being carried by parents. Keeping the muscles stretched, which was usually done by their mothers or hired nurses and relearning to walk were the initial priorities. During the time of long term treatment, various surgeries were mentioned; some surgeries were described as needed while others stated they were experimental or unneeded. Typically, the women mentioned various corrective surgeries to improve the function of a particular extremity, such as the hand or foot. For instance, Betty, a 59 year old with polio since age 2 years stated that her thumb was a "flopping appendage" until surgeons transferred a muscle from the middle finger to an area surrounding the thumb, which gave it support. Other surgeries were done to balance the growth of the individual. For instance the growth plate was damaged in one leg to prevent it from growing because the opposite leg was not growing due to the effects of polio. Deborah, a 59 year old with polio since 3 months of age described six childhood orthopedic surgeries for 97 various reasons. She stated, "One of the surgeries was to stop the growth of this (left) leg so that this (right) leg could catch up. But they let me go home and I had a growth spurt. So I ended up with my right leg longer than my left. Can't win for losing." By far, however, the majority of surgeries were done to correct an abnormal curvature of the spine, which often required multiple surgeries and body casts for extensive periods of time, frequently longer than 6 months. This was described in detail by Martha, a 57 year old with polio at age 8 years. I've had three spinal fusions. They put me in a cast, I remember, to try and keep it from curving. I remember watching the movie. It was a pretty horrendous movie to watch knowing that they're going to be doing that to you, but they had the video. They showed my parents and me before they did the first spinal fusion in Hot Springs. And then I was in a body cast but they let me get out and walk around with it. And that was a good sign. I was back on my feet again by that time. And that was kind of mid spine. So what they did on that one was they ran across my hip bone on both sides and chopped off the bone on top of the hip bone and used that to put along side the spine to brace it when they put it back in to a more vertical position. But that did not hold and then I curved above and below it. And they put me in a Milwaukee brace, talk about torture device. Few women were spared multiple surgeries. Antoinette, a 57 year old with polio since 15 months of age required two surgeries. She was followed in a clinic for children with polio and noticed others were having more frequent surgeries, which she called the operation hopper. She stated, Yes. See, that was happening. I know that that was happening because you'd go to the monthly checkups and people that you saw were walking in braces. The last month they are going in for their final you know evaluation before their surgery. Then the next time that you see them, you know they're in casts or on crutches and all this stuff and they're like, wait until it starts with you. I'd say nobody said anything to me. My parents weren't interested. Maybe it's because my parents were determined to pay part of it themselves that I never was put into that the operation hopper 98 because I just had two, and the two that I had enabled me to walk without braces. Well, enabled me to walk better in braces. During the long term treatment the women described feeling that their selves had been altered by their treatment experiences. The main changes were related to their growing need for independence as they felt a positive outlook toward their future abilities and a determination to provide what they needed for themselves. Physical improvements gave them a basis for hope; being optimistic was described by several. As Pauline, age 57 with polio at age 9 years recalled, Still rather limited physically but since improvement was still daily or almost daily, it was easy to be optimistic. And you saw changes not only in yourself, but you saw it in others so even if you didn't quite make it today, there was no reason to believe that you wouldn't be able to do it tomorrow and that was very helpful...You kind of hope for the best and brace yourself for the worst. When progress slows, then at some level your brain says well, it's probably not going to be like it used to be, ever. But I guess I just sort of took it as it came. The women also recalled that during their treatment they had to do for themselves. They recognized they had needs for their body and for themselves as individuals and many of the women were determined as children to provide for themselves. It is difficult to say if the women survived because they were innately determined to care for themselves or if this skill developed from the type of care they received. Pauline, age 57 with polio since age 9 years stated: Then I could lift my head up and put some food in my mouth and then put my head back down again to chew. Because sitting up even just, I mean not all the way up but somewhat, I could stick the food up and I'd do fine the first few bites. And then it would be kind of very unsteady and I was liable to wind up with the food on my chest instead of in my mouth. So I was the one who decided rather than wait until the food was cold and 99 somebody would come help me eat, I would just try having the tray put on the bed and I would just take care of feeding myself that way. Kathy, age 63 with polio since age 12, came home after her initial treatment but developed a similar need to care for herself. She stated: "...it seemed to me that once I got home life just continued and it didn't continue around me. I wasn't really..., it was hard. So, I was kind of on my own and developed my own abilities with time. You know...devices to entertain myself." A symbol of the long term treatment of the child with polio was the brace. During childhood all of the women described a need for some type of assistive device and the leg brace was the most frequently used. For instance, when asked about her body during childhood, Lena stated "I was in a wheelchair all my life but then I was a like a robot. I had long leg braces. I had hand braces, arm braces. I lived in a corset all my life and so forth." Braces symbolized their altered body, which were difficult to hide or disguise. Beatrice, who was age 60 with polio since the age of 5 years, stated she hated the leg brace because it made her different. She could not hide it because it was so big and bulky. But it also gave her the ability to "get up and walk with a cane" by the age of 9 years. Living with the Altered Body Living with the altered body was an experience of becoming conscious of the body as different in appearance and ability. It was also being conscious of an altered experience of the self from that of others who did not have an altered body. The ugly brown shoes the women had to wear, which were different than the other girls, became a symbol for living the altered body. Living the altered 100 body was composed of two sub-themes: The Altered Body and The Altered Childhood Experience. The Altered Body The women recalled becoming conscious of their altered bodies after the initial treatment for polio. Some of the women remembered their bodies before polio and some did not. Despite this, the women noted that their bodies were different than they thought they should be, as they compared one limb to the other limb or compared their bodies to that of siblings or peers. The difference became notable to them over time as they used their bodies. For the women who remembered their bodies prior to polio, the body was experienced as different in appearance and ability. Their experience before polio as children with symmetric extremities, a normally curved spine, or a full voice was changed indefinitely. Patsy, age 60 with polio since age 9 years, stated, "I was ten or eleven and I kept getting worse and worse and it got to where I was just bent over kind of doubled over and I couldn't straighten out". Donna, age 56 with polio since age 5 years, stated that "so you know but I was always embarrassed by it and didn't want people to see it. Because my toes don't lay down exactly like they're suppose to. I even have a finger that's crooked. But my toes, my foot kind of leans this way a little bit. This is the little toe, it kind of sticks up. I was always embarrassed for people to see it". Moreover, even the most active of children noticed the difference in the ability of their bodies to perform. Martha, age 57 with polio at 8 years, recalled how her body changed in function due to polio and the brace she was wearing when she noted "And I 101 couldn't sit because it cut into the top of my legs. I knelt, I knelt at school. I knelt at church. I knelt at home." Women who did not remember their bodies prior to polio often stated they were fortunate not to know how they might have been without polio. Janice, age 57 with polio at age 3 years, stated, "I know one of the things is because I had polio when I was three. I don't have a memory of walking and running and playing and doing things as a `normal' child. I've always had a disability and so it's easier to live with it than had I had it at a later time." Despite this, they noted the differences in their own bodies' appearance and ability. The movement of other bodies when they walked was noticeably different then their own. Other children didn't wear braces or need surgeries. For instance, Elizabeth, age 55 with polio since 6 months, could not walk after a spinal fusion. She described how her leg would not bend and her fused back would not allow her to hike her hip up to compensate for the stiff leg. This left her with no choice but to remain in a wheel chair. For Deborah, age 59 with polio since 3 months of age, knowing her body was different was part of her uniqueness; however, this was shattered when she learned at a rehabilitation hospital that her unique shape was not unique. In fact, she was part of a group of children who were physically altered. The Altered Childhood Experience Living in the world as a child with an altered body, with altered physical abilities, impacted the women's ability to participate in and experience the world. Their place in the world was considered special, whether they were being included or excluded. For some it meant they could not run. Other kids ran for 102 them after they hit the ball in recess. For others it meant they could not have friends or trust people to be consistently nice. They knew that kids could be cruel. Over all, the women knew they were different, which was more than a difference in appearance and ability. It was a way of being in the world. Kathy, age 63 with polio since age 12, described her experience in elementary school, where she was taken, put in a chair, and stayed until she was picked up. She said, Kids didn't know anything. They were afraid. Because parents, you know. The whole deal was still a fear. Even after the summer. You didn't fit in. You weren't able to do the things... I had friends, call friends and stuff. We would talk and read things. But, not... A lot of children were afraid. I was never cruelly treated. I wasn't other than looked at, of course. But, nobody was ever malicious. I was in my own world, I don't know. I was different then a lot of people. The women began to plan for life based on their experiences as being different because of limitations of their bodies. Deborah, age 59 with polio since 3 months of age, began to rely heavily on her mental abilities. She stated, "I also remember telling myself well, hell. Now you've got scars on your legs. Can't be any beauty queen with this. I guess you're going to have to make it on your brains." Over time, the women began to see themselves as "different limitations that you know of as yourself". The self and the limitations were part of being in the world as themselves--the body and the limits were all part of the child. However, the child also had strengths, which were primarily recognized in their cognitive abilities. Shoes were a symbol of the altered experience of childhood. Almost every woman described her dislike for `those ugly brown shoes" she was forced to wear. An example of these shoes with an attached brace, as well as other types of 103 braces, was provided in Appendix C. During this time dresses were mandatory, which meant shoes and braces were visible. Being picked on for wearing ugly shoes was not uncommon. Typically the women noticed the difference in the shoes they wore compared to the shoes of the other girls around them. They wished to be like all the other girls and wear cute little shoes. How Families Shape their Children Relationships with family members were intensely important to the women primarily because the women were conscious of the sacrifices members of their families made for them during their childhood and due to the influence of their parents' presence in their lives. This theme, How Families Shape their Children, was composed of two sub-themes Family Sacrifice and Parental Presence. Family Sacrifice The women were conscious of how members of their families sacrificed for them during their childhood experiences with polio. Parents, siblings, grandparents, and cousins were all mentioned as people who sacrificed in some way for them. Kathy stated that her mother "bout strangled herself cause she thought I was suffering from something she did." Many of the mothers were responsible for providing physical therapy at home while caring for other children. The women knew this was a sacrifice for their often busy and tired mothers. As Sarah Jane, age 61 with polio at 4 years, stated, She put those hot packs on there, is what they had her to do. She'd get them as hot as she could stand to wring them out and put them on me for so long. Then she would exercise me so long and then she would give me 104 a real hot bath and exercise you in the bathtub. She did that twice a day. I always wonder how my mother made it when I had polio because I was only four. That would make a sister nine and that would made a brother seven and then that would have made my little brother three and the baby, then...she told me in later years when every time I cried and begged her not to do it, she'd go off in the other room and cry. Other members of the family were also known to have sacrificed in some memorable way in order that the women received the care they needed as children. Siblings were described as doing without their sister, their parents, or even their homes. Betty, age 59 who had polio since age 2 years, described how her mother cried when she learned Betty was transferred to a distant rehabilitation hospital. Her mother stated, "I'm afraid she'll forget she has a family if we don't go, too." So the entire family, which included a mother, a father and three siblings, moved into an old farm house near the rehabilitation hospital where Betty was staying. The parents picked up odd jobs at the hospital and her siblings were often seen sitting in the car waiting to get a glimpse of her. Betty's mother also led the March of Dimes drive in her area. The sacrifice by their families brought the women a feeling of commitment; they also voiced a strong sense of gratitude to all members of their family. For women of Hispanic culture, the family communication was changed and members of the family had to make sacrifices to maintain a relationship with the child. Four of the five Hispanic participants in the study described being taken from their homes after the onset of polio where they stayed away for extended periods. Rosaria, age 63 with polio at 2.5 years, was missed by her sister but when she returned home they could not speak to each other. The change from home to 105 hospital environment resulted in a change of language for the entire family. Antoinette, age 57 with polio at 15 months, stated that Well, I think it tremendously affected my family because nobody spoke English before I got sick. I didn't speak Spanish. It always made me cry but they all learned English for me. They all learned to speak English because of me and that was just overwhelming. When they went and picked me up, I didn't recognize anybody. Antoinette's family sacrificed to learn the English language but also sacrificed their plans for a large family because Antoinette was considered for adoption by wealthy Anglos. The family had to change their plans to have several children so that Antoinette could have all the resources she needed. Parental Presence During childhood the women were conscious of how their parents supported, protected, and pushed them during their long term therapy. The women were conscious of support when parents interceded on their behalf either in school related situations or in health related situations. Many parents had to demand an education for their children. Others stood up to physicians or nurses on their behalf. For example, Antoinette, age 57 with polio at 15 months, described how her father was important to her when she said, "But yeah, he was a major player in my life. Major. And it was to the last. It was [Antoinette] and dad. I think probably the fact that he would always intercede. He was always in the doctors' meetings. That made a difference." The women were conscious of parental protection when their parents made efforts to prevent further harm to them. This protection was wanted in some situations but not in others. In fact, it was a double edge sword because if the 106 protection did not seem warranted it was stifling to their sense of growing independence. For instance, Darlene, age 63 with polio since age 5 years, stated. "Probably growing up with the effects of the polio. My parents held me back a lot. I couldn't ride a bicycle because I might fall. Things like this. I was not equal to the other children." This was also seen when some women were not made to do chores that siblings were doing around the house. Betty recalled that her siblings were made to chop cotton on the farm, but she was excluded from this type of work, which made her feel different and guilty. The women were conscious of being pushed by their parents within a continuum of experiences. They were told to try what they wanted despite concerns about ability and they were told to complete tasks despite any protests. The women translated these messages into meaning they must be able to look out for themselves and not ask for help. For instance, Dorothy, age 62 with polio at age 10 years, described how she attempted to let her mother wait on her as a child but was told that would not happen. She said, When I got home, why I got spoiled, babified and Mom didn't want to do that anymore. So mother stood me up against the wall. You're going to walk again because if you don't walk again, I`m going to spank you. So in order to not get a spanking, I walked. I could anyway, so. It was just nicer to have her waiting on me. Another example was from Elizabeth, age 55 who had polio since the age of 6 months. She described how her mother would not let her take handouts from people because she was to learn to do and get things for herself. This became her way of being in the world. Elizabeth exemplified this when she stated, "The same thing mother did with me. We've got to be out there and make it on our own. We 107 can't expect other people to do it. You've got to get out there and get it on your own; so [we] were pushed." There Are Things Worse Than Polio Poverty, abuse, and discrimination were considered worse than having polio. The experience of having an altered body and being in the world was secondary to being poor, abused, and/or discriminated against. For some, these negative experiences caused them to feel older than their peers. For others, it strained their relationships with family and care providers. Poverty influenced whether or not the child would be accepted within their peer group or if they could afford toys, assistive devices, or clothes. In fact, Donna described being made fun of for wearing the same skirt to school repeatedly. She stated, I remember not ever being very happy. I mean that has nothing .... I don't think that has anything to do with polio. I don't think. I don't know. But I don't ever remember being very happy. I remember that...I can see from old pictures the sadness in my eyes. I am sure that's because of the way we lived. You know my mother had to work two jobs....We lived in a one-room house. We were very poor. Childhood abuse was experienced in the form of sexual, physical, and verbal abuse. This was often a `secret' problem that prevented them from enjoying their home life or from sharing their homes with friends. As girls with disabilities, participants could not escape an abusive home life by physically leaving as male siblings did. Pauline stated that the rehabilitation hospital provided the predictability that her home life did not provide. She had a verbally abuse alcoholic father who "did not want a cripple" for a daughter. For Deborah, 108 the home was also worse than the hospital. Deborah's father had a mental illness that led him to force Deborah to do many abusive things, including telling her to hit her mother for `letting' her get polio. She stated that, I think that innocence, I think my dad took that away. I think I felt innocent in the convalescent home you know free-spirited, fun loving but then when we came home to weirdness; I had to have an awareness of life that children don't have to have. Maybe that's why I started the newspaper and did goofy things like write notes to boys that I never could go out with. I knew that was my attempt to interject some fun and silliness into my life. I don't know. I never felt constricted but it's a sense of responsibility that kids don't have a sense of responsibility. My dad made me think I was responsible for everything that happened and when you voice that on a child, you've lost the childhood. Although the majority of abusive situations were perpetrated by relatives, participants also described abusive situations in the hospital perpetrated by those caring for them. For instance, Janice described being abused when she was in the hospital. There was one incident where I was a bad kid because I acted out the fact that my parents were leaving me all the time. I took Crayolas and marked on it. There was a picture on the wall of a clown's face and I marked up the clown's face probably acting out the anger. I was punished for it by a Catholic nun. She picked me up and put me in a barrel of dirty clothing in a closet and closed the closet door. Now I don't know if I told mother and dad the next day or however it was, but it was their way of punishing me for acting out. For being a typical a child, I guess a two year old or three year old. The memories aren't good. Being thrown into a trash can isn't exactly a pleasant memory. The abusive situations were worsened when no help could be found. For instance, Patsy did not receive help from her mother when her step father made sexual advances. She didn't protect us from nothing. My step dad tried something with me. I broke the phone over his head. I'm not talking about one of those plastic 109 phones we have now. I'm talking about one of those old...it's a wonder I hadn't killed him. Really. It is a wonder. The next day, he tried again and I wasn't putting up with his bologna and she said, `well, he's only wanting some fun.' I said, `he's not getting it out of me.' That is what she said. The betrayal felt by Patsy stayed with her a life time. The abuser, however, was never seen as completely bad. The women were often left to feel anger and love for their abuser. Donna's statements about her mother's abusive acts are an example. My mom was the best mom she could be with the disease that she had. She had three kids to support. She worked two jobs. There were days she could barely move. She was a bookkeeper. I was also the one she took her anger out on, too. I mean you know you have to strike out. When someone is hurt and you're angry, you have to strike out. Somebody usually gets it. I was it. She didn't mean to. I mean I believe that in my mind. I believe in my heart that if she had to do it over, she wouldn't do it. But she had to strike out. The experiences of abuse and poverty were often described as causing the child to mature faster than normal. Dorothy recalled being sexually molested by two step fathers and one great uncle. These experiences aged her and left her unable to look people in the eye. She said that, I think I skipped a childhood to be an adult because I had a very short childhood. It seemed like I changed after my great uncle molested me several times, several times. When I would just cry and pitch a fit when my grandparents would want to go out there and take me with them. They couldn't understand. I never did tell them why. Discrimination, which was a way of life for the women during their childhood, was described as a greater problem than polio. Janette, age 65 with polio since 13 years of age, was aware that maintaining that way of life was a matter of survival. She knew that she was limited not because of polio but because of her race. "You just couldn't do that because it wasn't for you." Alita, 110 age 60 with polio since 1 year of age, described several forms of blatant discrimination that affected her as a Chicano child. Blatant is when you go to a restaurant and there's a sign that says no dogs or Mexicans allowed. That's blatant. When you go to a movie theater and you can't sit downstairs. You have to sit upstairs. They have a special place for blacks and a special place for Mexicans. Anglos sat downstairs. That's blatant. Blatant is when you have an elementary school for you and a school for the others on the other side of town. The instruments that the band used at the junior high that we had were old instruments that the other junior high had used up. When they bought new ones, they passed them down to us. That's blatant. There's a lot of examples of that kind of stuff but their mentality always was that's the way things are. ADOLESCENCE 1952/1962 TO 1961/1971 Events that Changed a Time and Place During adolescence, age 13 to 22, historical events were identified by the women that either influenced the way they viewed society or inspired them to contemplate their position in society as women. The Korean and Vietnam Wars, the assassination of President John F. Kennedy, and the shooting from the University of Texas Tower by Charles Whitman were all mentioned as events that impacted the way they viewed the world. The women's movement was identified during this time as a catalyst for deciding their position as women in society--pro or con equal rights. The Korean and Vietnam Wars were frequently mentioned as significant events. Brothers, husbands, friends and other acquaintances participated in the wars and the women recalled feeling concern for the men who went to war. Kathy stated, "And we lost our innocence at that point, and then with the Vietnam War we were losing our innocence more and people were dying for the cause." When 111 the women lost people they were close to in the wars, the losses were interpreted as maturational and educational. They learned further about the fragility of life and the unexpected nature of physical harm. Sarah, age 61 with polio since the age of 4, lost a relative during the Vietnam War. He was missing in action and Sarah stated, "You always, it's just, there's no completion. No end to it. It amazed me how many years that you still think about him and wonder what happened to him." The women also mentioned the assassination of John F. Kennedy as a salient event in history. Many felt it changed their view of government at an early age. Alita, age 60 with polio since 1 year of age, described her reaction. Oh, my God. That was just heartbreaking. I was at [college]. In the Mexican American home, that's one of the things when you walk in to have the Virgin of Guadalupe and a picture of John F. K. He was an idol for the Hispanic community. At least that's my perspective. Mexican Americans were fascinated and I'm still . . . every time they run it on TV. I'm still convinced that there was more than one gunman because his head flew backwards and so somebody from the front shot him. It couldn't have come from the back. I don't care what they tell me. They can't convince me otherwise. That was a heartbreaker. I guess in the first place because it was him and more importantly because we would have something like that happen in our country. That was . . . when you see it in other countries. We call them uncivilized and all of that kind of stuff. And then this country where it could happen is just unbelievable. I'm proud to be an American. I think America is the best country there is. There's a lot of things wrong with the system because I've seen it from being on the receiving end of discrimination and the inequity. But I think what it has done. Sometimes I think what continues to be confirmed to me is that our government is not our government. The shooting by Charles Whitman greatly impacted Pauline because she was on the University of Texas campus at the time. The shooting brought out 112 feelings regarding her vulnerability and feelings of disdain towards the callous reaction of others to the loss of human life. I stood up. I was in the library of the business building and collected my things and was just picking them up to leave when someone came out of the office. We have instructions that no one is to leave the building. There is a sniper in the tower. I started to go to the window to see if I could see anything and somebody said if you can see him, he can see you. So I moved away from the window and wound up going to the basement. There was a close circuit T.V. Eventually it was over and we were allowed to leave and that was . . . I was kind of shaky walking from the business building towards Guadalupe. For weeks afterwards, people on summer vacation were on campus looking gleefully for bullet holes and blood stains. It just kind of all brought it back up again and I just found that so repugnant, so awful. The women's movement was considered of significance to the majority of women and most had a strong opinion about the phenomenon. The reactions varied from being strongly against the women's movement to being very supportive of the women's movement. Others found middle ground by agreeing with some but not all of the things done in the name of women's rights. It was common for the women to say "You know they started with the equal rights thing. That was the very beginning of it, which I was for, but the way they were doing it. Somehow it just didn't seem right." For many of the women such as Pauline, age 57 with polio since age 9, burning one's bra seemed to be taking things a little too far. I thought it was pitiful and not helpful with women burning their bras. That just didn't help matters at all. It made it easy to dismiss the important issues. Oh, these are just women going off half cocked burning their bras. But yes, the women's movement has helped quite a lot. Just that the more women who are out there accomplishing things, the better things get, too. 113 Conscious of the Body's Improvement During the adolescent years the women were conscious of their bodies becoming more functional, as in more capable of activities. The women became more conscious of their ability to perform their will with the use of their bodies. Many women were able to lose their braces during this time period, which was in effect losing a symbol of being disabled. During this time many of the women perceived that they were living their physical best. The Body Improves Adolescence was a time when the women's bodies continued to be limited. This ranged from limping that was exaggerated with fatigue to the inability to walk. At no time did the impact of polio completely disappear from these women's lives but it did greatly diminish. Many of the women continued with their long term therapy through most of their early teens, but by the end of their teen years most were seeing a difference in the function of their bodies. In other words, they were beginning to perform activities they were previously not able to perform or performing them with less fatigue. Joann, age 65 with polio since age 12, was deeply moved by her increased abilities in her teens. She stated, "And I will never forget I guess one of the biggest events of my life was when I was in church and it was after the surgery, several months later, I remember I could stand all by myself. I had never been able to do that. Well, here I was in church and I started crying." Most of the women contributed this success to their therapies and an increased level of 114 energy. Frequently the women made statements such as, "it seemed like the older I got the more stamina up until..." The women's ability to use the body effectively to meet the demands of the self was enhanced during adolescence. It required both energy and physical ability, which were frequently at their highest levels. This led many to describe their late teens and early twenties as their physical best. For instance, when Janice, age 57 with polio since age 3 years, was asked when her physical best was she stated, I would say it was early, well either late high school or early in my career. Because I really didn't have any fatigue coming in until probably the early eighties. But I think that whenever I was first working and then doing things on the weekend...there was a time when I was in all sorts of different associations and different organizations, both sports cars and motorcycles and stuff. Losing the Braces During the adolescent years the women began to lose their braces, which included back and leg braces. For instance, Betty, age 59 with polio since 2 years, stated that she always used some type of assistive device but beginning at age 14 years she no longer had to wear a back brace. Losing the back brace was important because it was uncomfortable; it was a nice feeling for the body not to wear the corset type brace anymore. The braces were tight and restrictive, which had both mental and physical affects. The braces were a symbol of their impaired bodies; therefore, it was mentally liberating not to wear their braces. It did not mean that their bodies were without impairment, but it did mean that without the symbol of impairment they 115 were less likely to feel and be perceived as impaired. This also meant they could wear some of the shoes that other girls were wearing at the time. Braces were often built into special shoes. So, by losing their braces they lost their symbols of impairment and disability. For instance, Antoinette, age 57 with polio since 15 months, stated she felt liberated after her braces were removed. I thought gee, I'd like not being able to squeak. I'd like not having people know I'm coming. I'd like to wear real shoes. So I decided I'd see how it goes and I was going to take them off. So we hunted around and hunted around because my feet are different sizes. It was really hard finding a pair of shoes in the two different sizes. My mom found me a pair of penny loafers and luckily at the time, that was kind of like at the end of the penny loafer age, but not too far to be really dorky. I wore these penny loafers. I remember going to class and coming down the stairs one day and there was one of those little yellow signs in the hallway. You know caution, slippery floors or wet floors or something or other. I fell. I didn't get hurt and it was the strangest, strangest feeling because I fell down and I dropped my books and nobody made a fuss. There was no big deal. It wasn't oh gosh, stop. [She] fell. Help her. Quick. It was none of that. It was oh gosh, that slippery floor got another person. It was the strangest, most liberating feeling. It was one of those, like it is kind of cool. So I just got up and nobody noticed. I picked up my book. I looked around and nobody noticed and I just went on to my class. Vanessa, age 56 with polio at 5 years of age, shared Antoinette's view when she stated, "It was a hard surgery. It was a very painful surgery but it was worth it. For six months, I was in a cast and then a brace for a little bit longer. A couple of more months and then I could wear the shoes I wanted, which was nice because then you felt like you were part of everything." Becoming Conscious of Potential Ability During this period of increased ability the women became conscious that they could use their bodies to achieve their will. The women stated that their 116 bodies were still limited, but the women were able to use their increased abilities along with strategies and devices to plan for their futures. Although unsure of their exact potential for a career, marriage, and/or children, many found themselves eventually doing those things. In fact, the majority of women went to college, married, and had a family. Others chose different paths. Regardless of what path they chose it was during the adolescent years that they realized they could use their bodies' to influence their life course. For many women their ability to achieve and affect their own outcomes came through their experiences, which influenced their perception of their physical abilities and their perceptions of their abilities to be in the world. In other words, the women learned they could do more and more things after they were out doing them, which led them to realize they could do even more. For Betty, this meant learning to step up on a curb. She stated that, "I finally succeeded (to step up on the curb). So when I, like I say, started school, I had a lot of steps to go up and to go down. But I had been able to master that skill and that's what got me through school." Rosaria, age 63 with polio since the age of 2.5, was the first in her family to attend college. She had attended a school for people with disabilities within her community throughout the majority of her life. She decided to become a teacher as a teenager, so after graduation her mother went with her daily to a local junior college. Her success there built her confidence over time. She realized she could attend a larger, distant college when the time came. Afterwards, she realized she could do other things on her own. She stated, "I am very glad I went away to school. It helped me to realize what I could do and what I couldn't do 117 because I was by myself. I did it." Kathy, age 62 with polio at age 12 stated, "You know I figured out how to handle that. And I guess that is how my whole life has been, how to do that. How to fit into the things that you can't, that other people fit into different than you. But you are the round peg for the square hole." Some women's knowledge of their potential ability came serendipitously as they became acquainted with others with disabilities. Betty, age 59 with polio since the age of 2 years, realized her potential to drive when she was a teen. She met a person with a spinal chord injury who could drive with hand controls. This made her conscious that people with disabilities could do what everyone else was doing. She could drive when she became old enough. She said, "But he could drive, and I was looking that car over good, too. In fact, I had said something about that, `I was going to get a car'." Adolescence was considered the time in their lives when they might reach an unexpected, unknown potential. Goals were being set for their future, frequently keeping in mind their knowledge of their physical limits. Kathy, age 62 with polio since age 12, stated, "I was going to college and I was going to get a degree because I knew I couldn't do farm work. I didn't want to stay on the farm and I wanted to get out of this town. And so I did." Darlene, age 63 with polio at age 5 years, knew that limitations can be created through barriers placed before her. Her parents had not allowed her to be an active child because of her polio. She perceived that they were too protective of her. Once she became an adolescent, she quit school, left home and married in order to be independent. She stated, 118 But then you think really, that's what makes the younger people... you think you can change the world. You think. So if somebody doesn't come along and really stomp on you and tell you, you can't. You at least try. So you come up with a lot of things that make a difference in a lot of ways. Knowing and Showing the Body's Limits Despite improvements in their bodies and their ability to use their bodies to meet the demands of their will, limitations remained that the women were more or less conscious of in their daily lives. The women were unable to distance themselves completely from their impaired bodies. For some this meant being reminded of their impairments by the occasional injury or accident, while for others it meant the inability to access public areas. Ultimately, the women faced decisions about how much of their bodies they would conceal or display as impaired. A tension existed between knowing of a limitation, being reminded of a limitation, and letting that limitation be known to others. Reminders of Limitations The women were often reminded of the differences and limits of their bodies and subsequently their ability to experience the world. Pauline, age 57 with polio since age 9 years, described her experience as a teen going to high school in Texas. She stated, It was hot. And if I did very much walking, then either the bottom part of the corset and/or the chin piece on the head traction could absolutely rub the hide off my skin and it would bleed. It was hot and I did very much walking, the friction would just completely wear the skin off. That`s to be avoided, needless to say. Others felt less discomfort as their braces were lost and they went off to college, but their bodies continued to remind them of they were different. Martha, 119 age 57 with polio since age 8 years, described her experience walking on a college campus. She said, "I had problems in college because my knee would go out on me. My right knee would just kind of quit. So what I would do is wrap it with ACE bandage and truck on." Charlotte, age 57 with polio since age 4 years, described her college years as limited when compared to the activities of other adolescents. I went to [college] and taking prerequisites and just your regular English and stuff like that. But my stamina started leaving me, and I had to work part time to go to college and so going to college and working part time, and studying, was very hard on me. I got tired. Other people could just do it and party all night, but I couldn't do it. I mean I still had dates and there were normal things, they weren't like staying up late, 2 o'clock...that kind of stuff, it was just normal going to the show and coming home and doing something like that on the weekends. And I was tired, I just was tired. Injuries in the adolescent years were also a reminder of the limits of their bodies. Deborah, age 59 with polio since 3 months of age, had an accident as a teen while riding in a bumper car with her grandfather. I started seeing a decline you know. It's hard for me to walk. Why is my foot dropping? And I'm falling more. Why am I having more accidents in terms of the toilet? I had done my time and how dare something else happen out of something as wonderful as being close to my grandfather. Why is it that I can't have any fun? I just went into a really deep state of depression. I just I don't see what the point is. Injuries were especially disappointing because they represented a set back at a time when the women were anticipating improvements. Hiding What Can be Hidden It was while discussing the adolescent years that issues of hiding the impaired body were discussed most frequently. Since their experiences with their 120 body continued to indicate some level of disability the women were faced with letting others know in social situations. For some women, the issue was irrelevant because they did not feel their disabilities could be hidden. Some continued to need their wheelchairs, braces, crutches, etc. For others, their impairments were minimal. They did not perceive a need to hide the minimal differences. Others saw the differences in their bodies as distracting from their ability to be attractive women. They recognized that a high value was placed on the appearance of the body during the adolescent years. Deborah, age 59 with polio since age 10 years, described the way she saw her body as a teen. I was seeing a girl who limped a little bit, and who I thought was fat and not pretty. Just the whole deal like that, which is just that I had such a terrible inferiority complex and everything because of what all I had been through when I was little. It stayed with me. Dorothy, age 62 with polio since age 10 years, recalled that her feelings of inferiority and shame led her to hide her scoliosis. Disability when I was younger, I would try to hide it. I was ashamed of my body because I had, from the scoliosis, a hump on my back. When I was a teen, it didn't show up as much as I thought it did. I was my own worst critic, of course. I would try to; after we married and stuff [married at age 16], I would try to dress to conceal you know. Back then it was popular to wear those little sleeveless vests and I don't know how many of those I had to go with everything I wore. Even when I would put on a dress, it would be on a slant, the hem would. I had a friend help me make a dress one time that we could even it up and it just didn't look right. I wore a girdle all the time. Those miserable things to hold my tummy in so I'd look halfway decent. The morality and fashions of the time period dictated that women wore dresses. This meant that differences in leg appearance and/or braces could not be hidden. Throughout their teen years, some women reported hiding their bodies in 121 their cars. Sitting in a car would allow them to meet boys at drive-in theatres or car hops without showing off the differences that dresses would not hide. The social change that allowed women to wear pants was more than a women's rights issue; for some women with disabilities, it was a matter of privacy. Finding a Voice in Relationships During adolescence the women began to learn to assert their will in relationships. This included relationships with authority figures, parents, and friends. In order to gain access to needed services, the women began to verbalize their needs to people with authority, such as school administrators and physicians. Many asked for access to high school classrooms and colleges, which increased their belief in their ability to change and participate in the world. Lena, age 62 with polio since the age of 10 years, described how she took the initiative at college to get the help she needed. The deans were always very nice but I was a talker. I would go up to the dean and tell him, well, how am I going to get up here? So he would always assign two guys. There were always two students who were always waiting to carry me at the steps or whatever building I was going to use. It was hard. It was fun because the guys were real neat about it. Relationships with health care providers also shifted as the women contributed to some of the decisions regarding their treatment. This was a large shift from being uninformed, passive recipients of care during their childhood. Pauline, age 57 with polio since age 9 years, described her hammer toe surgery as "my choice". Betty, age 59 with polio since age 2 years, was given a choice between surgeries to stiffen her knee or wearing braces. Her physician 122 recommended not having the surgery so she agreed. It was significant; however, because it was one of the first times she was given a choice. Although some stated they did not date or socialize during high school, after high school most were enjoying a social life. They began to negotiate relationships with the opposite sex as well as develop lasting friendships. Alita, age 60 with polio since age 1 year, described how she was under the impression as an adolescent that she would never date. The physical part is . . . I never thought, never thought that any man would be interested in me. Because growing up that was kind of the experience you know. I never dated in school and things like that. I just never, never thought that men married women with disabilities. I mean if you see people with disabilities and they are married, you think maybe they were already married when they became disabled because we are such a physical oriented, attractiveness kind of . . . and you have to look a certain way. You have to have a certain kind of body for a man to even look at you. And for a man to look at you and see the disability and see beyond that, I thought it would take a special man. I never thought it would really happen. In college, Alita acquired several friends, dated, and eventually married. Deborah, age 59 with polio since 3 months, had an alternative view of dating. She found that men were attracted to her body because she had large breasts. She described herself as "a sex crazed kid" who was not about to let a man stand her up. For her, her body's sensuality was not defined by her disability. Others made decisions to remain single despite marriage proposals and long term relationships. One woman had no desire for a husband or children. Disability, although considered by each woman as she negotiated within relationships, did not dictate whether or not a woman dated or married. 123 Several women stated that they made `mistakes' in relationships during this period, but they also stated that they developed the ability to take risks in relationships. For instance, Cindy, age 56 with polio since 3 years, wrote the Lonely Hearts Club to find her husband who traveled across the country to meet her. It turns out she forgot to tell him about her polio, but thankfully he stayed anyway. It was a relationship she valued. Other women married abusive men. Some divorced them. Others stayed. Most importantly; however, was the women's perception that they made choices to engage or not engage in relationships, and they grew as individuals based upon their decisions. YOUNG ADULTHOOD 1962/1972 TO 1973/1983 Things Needed to Change During their young adulthood, age 23 to 35, the women described how society needed to change and many perceived that they `lived the changes' as they happened. Work place inequality was frequently mentioned as a problem. Alita, age 65 with polio since age 1 year, knew of work force discrimination personally. Certainly, I know that there's discrimination. Go get the discrepancy between what university professors-- males versus females get. I was treated that way. I told you about that one when I went and found out that I was making less money than the guy that was in the same office with me. The majority of women were in the work force and their feelings about job discrimination dominated many discussions about the problems they faced in society. The discrimination that many women described was two fold: access and attitudinal. The women had more difficulty getting to work when the buildings 124 were a long distance from their parking areas and few accommodations were made. Moreover, attitudinal problems related to being a woman and having a disability made the access problems worse. For instance, some women had to convince employers to hire them. Pauline, age 57 with polio since age 5 years, was one of those. The man that I would be working for was fine with . . . he was glad to have found me, was absolutely ready to hire me. His boss though had some reservations because I had polio and he wasn't sure that I was going to be able to do the work. Stenographer, typing, filing, answering the phone. And this coming from a man who had lost parts of his fingers, I think it was on his left hand, from a grenade in World War II. And so his left hand was impaired but it certainly didn't impair his ability to work. Now why he was so reluctant to say well, you know, let's give this a try, I don't know. But he finally decided well, okay. Martha, age 57 with polio since age 8 years, experienced a problem with work surrounding her pregnancy. She was made to feel badly for her pregnancy during her professional employment. I guess by the time I went through that, I had been through two batches of men that I had worked with that I really had learned to keep my problems to myself. Because I had come in joyously announcing that I was pregnant and was so tickled pink that I was pregnant and had the guy that I was working with call me into his office and chew me up one side and down the other. How dare I thank him for getting me that job by getting pregnant while I'm working for him and on and on and on? And I managed to get out of there without crying, but barely. The women had personal experiences with work place discrimination based upon their gender and disability but many remained ambivalent to issues surrounding the women's movement and the American's with Disabilities Act (ADA). Kathy, age 63 with polio since age 12 years, was denied an equal salary to the men she worked with, which she perceived as unfair treatment. However, 125 she stated she had both positive and negative feelings about work place problems and the women's movement. I saw the good points [but] I think a lot of them were not to our advantage. Its like if you're Republican you're going to vote for the person no matter what he represents, that's not me. I'm not going to agree with the women's issues because... I'm not going to agree with some of the issues because I don't think they're good, but I think the whole process is good. I think it's just the fact of making the issue of the fact that you're a female, and being so sensitive to what happens. I think that's the thing, we've been too sensitive. I guess some of that comes up in the so called.... When women feel like they've been mistreated sexually at work. And you have to remember when I started in pharmacy in the sixties; men spoke, any assortment of female critique, jokes that were anti female. But I never felt that that was an insult to me. Janice, age 57 with polio since 3 months of age, had been accused of getting a job because of her disability, which she said was unfounded. During her work history as a young adult, she was proud of succeeding prior to the ADA. She was a hard worker and felt pride in her achievements. She had heard of the Rehabilitation Act of 1973, but did not feel she needed it at the time. I did everything that I needed to do. Of course, ADA wasn't even in there but I don't think it was ever an issue. If it was maybe I was naive enough not to see it. Maybe some of the people . . . like the woman that didn't want me there maybe she didn't want me there because I was disabled. It didn't seem to be that. The ambivalent feelings about discrimination against women with disabilities were highlighted when several women commented that people at least knew what they were up against then. In other words, the discrimination was blatant and honest. Now it is hidden. Pauline, age 57 with polio since age 9 years, stated, Nowadays it's hard to tell whether somebody isn't saying what's really on his mind out of fear of a lawsuit. Back when I was younger, particularly if you were interviewing for a job, they felt no, absolutely no qualms, men or 126 women, but I was mostly interviewed by men, about whether you were planning on getting married, whether you were planning relocation with your boyfriend or going to have children or any of those things. You just dealt with it. You didn't have to like it. You just had to figure out how to live with it. I Can Achieve The women were using both their self and their bodies to work toward attaining accomplishments during young adulthood. The self, body, and sensation were integrated into a nexus, which allowed the women to see themselves as whole, not as separate from their bodies and/or sensations. This was when the women fully developed the knowledge that achievement was possible. The women knew of themselves with limits, but learned how to use and push the body to rise above those limits. They were driven to prove themselves as capable in the world, not only to themselves but to others. It was important to show others their ability to pursue and achieve goals, to become independent, and to live adventures. As these were accomplished, the will to achieve was reinforced; therefore, the body was pushed further. The Nexus of Self, Body, and Sensation The women described themselves as being comfortable and accepting of their bodies during this time period. They discussed discomforts that were less severe then previous time periods; they were not inundated with negative stimuli. They also had become adept at using and controlling their bodies, even as reproductive issues arose. Tabby, age 57 with polio at age 2 years, described the way she felt about herself during young adulthood. She said, "It didn't bother me to know that I had differences in my body and that sort of thing from other 127 people." Rosaria, age 63 with polio since age 2.5 years, felt that she and other people came to know her as her body over time without thinking of her impairment. As they were known over time as complete persons, their limitations or differences were not meaningful in defining who they were as women. I guess they didn't see me as disabled. I don't know. Because you tend, when you're around somebody a long time, you tend to just, don't notice things like that.... I was able to get around the room. Lots of times, I'd misplace the cane. The kids would help me find it. But I didn't have any pain or anything. Tabby, age 57 with polio at age 2 years, described life as normal during this time period. She said, "I think my body was just doing all that it could do and have what I would call a normal life. I was very happy. Everything was fine." The experiences of the women as uniquely female were discussed during this period in their lives. They said they were using and controlling their bodies as sexual women with the possibility of reproduction. All but one of the participants voiced satisfaction with their sexuality during this time period despite some of them having reservations about discussing issues of sexuality. For instance, Sarah was reserved in her discussion of sexuality. Her mother had not discussed such issues with her. She said it was typical of her generation not to know much about sex during young adulthood because people did not talk about it like they do now. Several of the women volunteered that they had no complaints about their sexuality. The advent of the birth control pill gave the women a sense of control over their bodies. It also gave many a sense of control over their lives in general. 128 Kathy, age 62 with polio since age 2 years, described it as a source of power for women. Well birth control, men always had birth control, women never had a method. It gave the woman a little bit of power in determining her destiny, as far as child bearing goes. That was part of your feminist issue. We finally had the power to say I can protect myself too, without just expecting the male to be the only one that had some means of protection. The women, who had children, experienced few problems with their pregnancies and labor. Tabby, age 57 with polio at age 2 years, described pregnancy and childbirth as, "Incredibly, incredibly easy. It's like I'm the express lane for checkout. It's remarkable. I did have a little trouble with my sciatic nerve in my left hip. Pregnancy was easy." This was not, however, the case for all of the women. Miscarriages and infertility added a separate layer to perceptions of physical competency in the women's views of their bodies. Miscarriages were especially difficult for them to understand. The women didn't know what had contributed to the events and situational depression was frequently reported. The miscarriages were not perceived to be related to polio. The women described themselves as no different then other women in reproductive matters. Judy, age 57 with polio since the age of 1 year, described her depression due to her miscarriage as situational and not related to her polio experience. The only time that I can remember really being depressed was when I had a miscarriage. There were four years between my miscarriage and when my daughter was born and those four years, I was depressed, but that was for other reasons. It wasn't because of my situation [polio]. Infertility, when children were wanted, was also difficult. Betty, age 59 with polio since age 2 years, experienced premature menopause. Her physician 129 assumed she didn't want children, possibly due to her disability. She wanted further assistance from her doctor and her inability to find comfort, explanation, and medical advice contributed to her difficulty with not being able to have children. She described being confused when a physician examined her body; she didn't know if her body was different in ways not related to polio. But I remember him looking at me when I was laying there, he was just studying my abdomen, and I had thought, "We'll I've never seen naked women before." And I do have a lot of hair, at that time it went from my navel down to my pubic hair, and I had often wondered do other women have that too because with all your magazines with people in bathing suits they don't have hair there. So I thought maybe that's an abnormality, because he was sure looking at my abdomen, but I didn't ask him, I wanted to say, "What are you looking at." But he didn't say, so I often wondered does that mean that I had more male hormones in me or what did that mean. Overall, reproductive issues were a source of commonality with all women, not a source of difference. Becoming sexual beings, giving birth to children, and focusing on the body in ways unrelated to their polio impairment was part of being a woman, not a polio survivor. The only time anyone reported feeling different in relation to polio and their sexuality or reproductive abilities was when others, such as health care providers, suggested or indicated a difference. Proving Themselves as Capable The women, capable of using their bodies more effectively as instruments of their will, were attempting to prove themselves. They knew of their limits and considered them as they lived their lives, but they were determined to show themselves and others that they were able to meet their goals. They wanted to 130 show that they could do many of the things that people without the effects of polio could do. Elizabeth, age 55 with polio since 6 months, stated that she would not take a job for Goodwill because she had to say she was disabled to sell products. She said, "You didn't bring up your handicap or use it as a crutch to throw it out there in front of people. So therefore, I didn't do it. I wanted to make it on my own in what I considered a normal environment." Proving themselves was important because the women wanted to show that their physical differences did not prevent them from becoming successful. Janice, age 62 with polio since age 3 years, also described her desire to prove herself. I think I was trying to prove that just because I'm disabled doesn't mean that I don't know how to do that. I know that my disability was. I was wanting to prove that I could do it all. I'm not poor, helpless, disabled, whatever. But I don't know where I was getting that from because other than maybe the influence, again, of the those kids in elementary school that were so cruel to me that I kept feeling that I had to prove myself or that part of the fact that I could do things. I would overcompensate by doing other things. Some of the women stated that their desire to prove themselves was the basis for being described as Type A personalities. They said they had a drive to do everything to perfection. As Alita, age 65 with polio since 1 year of age, stated, "Somehow it has to do with, I understand it now, the type A personality. I didn't want to be different from anybody else. I wanted to be different but I wanted to be better. I didn't want to be worse." Reinforcing the Will to Achieve Through young adulthood many of the women began to achieve increasing levels of independence and have enjoyable adventures. Women who married also 131 perceived an increased level of independence. They had left their family of origin to begin their lives with their husbands. Many were traveling, having children and enjoying their independence. Women who went to college were graduating, starting careers, moving into their own homes and or traveling. Antoinette, age 57 with polio since the age of 1 year, described moving out of her parent's home and buying a house. She stated her mother did not see her actions as those of a "proper young woman", but Antoinette felt it gave her a high level of independence, which she enjoyed. Her mother wanted her to be "educated but still be a Hispanic woman who does what her mother says. She never saw the conflict there", but Antoinette did. Ultimately, she moved across the nation for a one year job. This proved her ability to be independent before returning home. Jackie, age 62 with polio since 3 years of age, became a nurse in the army and went to Vietnam. This was a large turning point in her life that proved her capable and independent. These experiences fed their motivation to achieve. Pushing the Body to Accommodate the Will to Achieve As their motivation to achieve in a "normal environment" grew with increasing levels of independence and experiences, the women increased their expectations of their bodies. At the same time, the women decreased their responsiveness to sensory input from their bodies unless it became overwhelming. Dorothy, age 62 with polio since age 10 years, described her experience trying to be a superior housewife, which caused her to push herself too far. I would do the washing in the sink. We were poor when we first married. And carry the wet clothes outside and hang them up and iron, I'm telling you. I ironed my cup towels and pillow cases. I ironed my old cotton bras. 132 You name it. I just thought my little family had to have everything perfect. But then that was pushing it too far I see now. So by the time it would be evening or I'd put the kids down for a nap, I would have to usually read to them until they fell asleep, and either I'd nap with them or I'd get up and just sit in an easy chair. Back then we had a recliner. I could get in and out of one then. I know I couldn't now. At age 29 Beatrice, age 60 with polio since 5 years of age, pushed to meet the demands of her busy life. She knew she was being hard on herself because she was only sleeping 4 hours per night. I kept falling when I was going to school. I just attributed it to I had two kids, I had a husband, I was going full-time to school and I was tired all the time. I just attributed all the falling to being so tired because I was horribly tired. I kept falling. Several women made statements such as, "and I worked real hard to be that. And my body slowly weakened." Being Aware of the Bodies Limits Over time the women pushed their bodies while evidence of decline began to appear. The evidence was in the form of falling, gait changes, bodily appearance changes, and/or declining energy levels. Frequently, the women did not notice these changes at the time because they were not responding to sensory input from their bodies until they were exhausted or in a great deal of pain. Moreover, the evidence of their decline was subtle and it came on gradually. Some women noticed the decline once it was obvious. Family members, friends or physicians pointed out the evidence of decline to many of the other women. As young women, they responded with strategies to dismiss or overcome the decline. 133 Noticing the Change Changes began to occur in the movement of the women's bodies, in the energy levels reserved to maintain their activities, and/or in the appearance of their bodies. These changes were attributed to pushing to meet the demands they had placed upon themselves. Typically, the women would say, "There were people that knew me for a long time and then one day they say are you limping? If I got real tired, I just couldn't hold it together." Judy, age 57 with polio since 1.5 years, found out her gait had changed when she went to a physician. I was having trouble. First of all, he told me did you know that you're dragging your foot, your left foot? I said, no, I hadn't noticed. So he put me in a plastic brace just halfway to support my ankle. And the minute I started using that, I did realize that. Yes, my ankle had been bothering me. Addressing the Changes Once the women were aware that changes were occurring in their bodies, they responded with strategies to either dismiss or overcome the changes. Some women dismissed the changes by telling themselves that what they were experiencing was common to everyone or that the change was an isolated or momentary problem. Beatrice, age 60 with polio since 5 years of age, attributed her increased frequency of falls to being clumsy. She told herself, "And it won't happen again." Tabby, age 57 with polio since the age of 2 years, described how she felt after working long shifts at a fast food restaurant. She knew she was tired but "everybody was tired at the end of their shift". Sarah, age 61 with polio since age 4 years, described her early experiences as a mother of four and a teacher. She began to have less and less energy with occasional episodes of muscular pain. 134 I think at first you just figure everybody else is the same way. You just needed a little more rest and slow down for awhile and you'd be alright. When you get to next week and you don't have so much to do, and you don't have so many . . . you don't have to figure grades. You don't have to get report cards out, well then you've got kind of a breather. So you kind of recuperate. During this time, it was also important not to admit failure. Injuries or other problems could be conquered if the women tried hard enough. The strategies for overcoming the problems were both physical and mental. Many of the women attempted exercises such as swimming or walking in combination with mind control techniques or self-hypnosis. Deborah, age 59 with polio since 3 months of age described being injured after her husband threw her to the floor. She improved by exercising on a stationary bike and knowing she would return to her previous life. Joann, age 65 with polio since the age of 12 years, described her efforts to improve. So I did exercises to that effect. So I stayed home that year and he told me it would take me eight months but I did it in six months, four to six months, because I used hypnosis in order to concentrate and focus on the brain. One of the things he would have me do when we went to his office would be he would pull out the skeleton and he would show what you were doing. In other words, he educated you. And at one point, I knew all the names of the muscles. And then he had a therapist that he would tell and they had pinpointed the exercises and you did that exercise. He gave you about four or five more and that's what you did at night. So it was very intense. Kathy, age 62 with polio since age 12, used mind control techniques to help her and her family. These were strategies that she learned during the 1960's. She said, "Another thing about the 60s, you know all those mind expanding ideas that went on. We went to a lot of those things. Some are bizarre, some unique, some of 135 them interesting." Kathy found some techniques that worked well for her, not just during times of change, but throughout her life. I did mind control. We all did, all of us, the kids, too. The thing I like about it was that it taught you, that you had the power in your own mind to make things happen for good or for bad. And you had to decide how to make it good and not to use it to hurt other people. And one of the things that, the little poster things I had, was that every day was getting better and better. You were headed for the positive and if in your mind you can conceive, you can achieve. And you use techniques to reinforce those ideas. The women who perceived decline occasionally turned to health care providers during these times of change, but few were satisfied with the information they received. Many sought help for falls and injuries, but others were less specific about what took them to see their doctors during this time period. Kathy, age 62 with polio since age 12, said "I just realized I couldn't go as far and do as much as I had before". Dorothy, age 62 with polio since age 10, was offended by the way the physicians she saw talked to her. The doctors around here were useless as far as that. They'd give me pain pills. One doctor said, "Now, now Mrs. Doe, you just need a nerve pill, a sleeping pill, a pain pill. I said, "No, I don't. I want help. I want something that will make me better." They would give me shots of cortisone in this hip, and other things. The women did not feel that the physicians they were seeing understood what it was like to age with polio; therefore, many were prompted to seek help from the physicians who treated their polio as children. Little information was available on the late effects of polio or post polio syndrome at that time. The majority of women continued with the mental and physical strategies that they developed, while others had surgeries to correct problems such as worsening 136 scoliosis. During young adulthood, however, no one quit pushing themselves to fulfill their desired roles. Proving I Can: The Women's Role in Relationships As the women journeyed through young adulthood many of their relationships began to demand more of their time and energy. Frequently, the women married, and cared for children while maintaining their homes and jobs. These relationships were important to the women. The high value the women placed upon their relationships combined with their need to prove themselves as capable pushed them to give all they could to the people in their lives. Marriage: He got a Good Deal, too. Don't You Think? For some women, the decision to marry came easy. They married the first man they dated. Elizabeth, age 55 with polio since 6 months of age, married a man she met and dated in high school. Others dated several men, but never married. Pauline, age 57 with polio since age 9 years, never married but had the opportunity. By the time she was a young adult she had decided that marriage was not for her. There were two or three guys that I dated long enough to kind of, flipped across my mind, "Is this someone I might want to marry?" But it's just that each time it was, "No, I don't think so." Now one of them, I'm still in touch with him occasionally and his wife. But I was absolutely right. I just didn't think that marriage was going to be in the cards with him as far as I was concerned. Gave him reasons why I thought it would be better for him to go ahead and start dating other people. Pauline also decided that the type of men she attracted were not suitable. She would rather be single then marry a man who pitied her. 137 I discovered that I tended to attract either one of two different kinds of men. Either men viewed me as helpless and they were going to take care of me, strong willed and independent minded as I have been since I was a small child, that wasn't going to go over very well in my mind, or they viewed me as being desperate. They would even say that they were willing to sacrifice themselves to give me sex, that I wouldn't be able to get it otherwise. Now even if I were desperate to have sexual relations with somebody, I certainly wasn't so desperate that I was going to have it with someone with an attitude like that. Some of the women perceived that they were considered less capable as wives than women without disabilities. This irritated them. It also pushed them to work harder to prove themselves as wives. Betty, age 59 with polio since the age of 2 years, married a man she dated several years. She was angered, however, when she perceived that other people thought her husband had done a good deed by marrying her. Yet, in the back of her mind she agreed. Well Joe married me and people said, "That Joe is so good..." And he is. And I know in the back of their mind thinking, "Why would he want to marry her?" And I can remember a friend one time saying, "Boy that Joe is really a fine man," something about him marrying you. And instead of me coming back saying, "Yes he did." In my mind I thought, "Yes, that's true". But I just came back with "I think he's the one that got the best deal," or, "He got a good deal, too. Don't you think?" It just made me mad. The women who married described how they pushed themselves physically to be good wives, which frequently meant doing household chores and providing meals. The women were not without any help, Kathy and Joann were able to come and go out of the work force as needed, and Kathy's spouse and Joann's maid helped them with household chores. The other women maintained their own households without assistance during their young adulthood. Dorothy, age 62 with polio since age 10 years, said, "I cooked everything from scratch. I 138 wasn't going to feed my family canned stuff. I had a garden. I raised my own food and I canned it and cooked it." The women wanted to prove they could make a nice home for their family. Charlotte, age 57 with polio since age 4 years, was married several years before her husband left her. She remembered working very hard as a young adult to be the best wife she could. But I did work very hard, working at work and then taking care of the children, and keeping a clean house, meticulous house, laundry always done, always cooked. I really worked very hard. I always wanted to excel. I always wanted to do the best that I could possibly do and I did it in every thing I did because I wanted to be the best wife and the darn everything else. Despite pushing themselves to be the best wives they could, they were not spared the possibility of domestic violence. Four of the women interviewed left abusive spouses, while two remained with spouses who had a history of abusing them. Abusive marriages demanded more of the women than they could physically give. Two women left because they could not care for themselves while being married to abusive partners; the other two did not leave until their children were threatened. Patsy left an abusive spouse but raised her children in a homeless shelter where she performed Chaplin duties. The women who stayed with their abusive spouses did so because they saw few options. After all, none of the women wanted to fail at marriage. Janette, age 65 with polio since age 13 years, was desperate for help but could not find any. She said, "I took an overdose of Bayer Aspirin one time because I thought with me being beaten up by my husband I just needed to die." One night Janette retaliated and stabbed her husband out of frustration, but she was thankful that he survived and eventually stopped his abuse. She commented, 139 Well, this isn't the way you do it... But you know when you need help you didn't know... And you know years ago, women suffered a lot cause they were by abused men and they didn't have any place to go. They had to take a lot of mess and they didn't have the money to take care of their children. They didn't have, I guess the welfare, the food stamps. So, what could they do but take a lot of this? And they were sick and hurting, hurting inside and having to deal with all that. Caring for Children: Feeling the Guilt, Loss, and Reward Just as the women felt the push to prove themselves in other aspects of their lives, many of the women felt the push to prove themselves as mothers. All but one of the women described fond feelings of children whether it was their biological children or the children of relatives or friends. As Sarah, age 61 with polio since age 4 years, stated, "Babies and rosebushes, I'd take any amount in any condition." Patsy, age 69 with polio since age 9 years, stated, "I raised my kids. I kept them clean. I put them in church. They went to school every day. I didn't go anywhere if I couldn't take my kids." A few of the mothers described feeling guilty for not being able to give their children what they perceived as the same experiences as other children who had mothers without impairments. Joann, age 65 with polio since age 12, knew that her ability to run after her children was limited. She described feeling guilty when she limited their play because she was trying to make a safe environment for them. Well, you had to set your mind that you had to know how you can make things safe for everybody. I felt a little guilty. I did feel guilty that my children couldn't do what other children could. I felt like I mean, you just couldn't go walk out the door out in the street and.... You had to make sure that everything was in a safe environment. That I felt very definite and I had to figure how. That you couldn't just... if one of them got hit in 140 the head or something, you couldn't just run and go take care of it. I do know I did have guilt feelings there, definitely. The women used strategies to ensure the children's safety. Teaching the children to walk early, teaching them self-reliance and independence as soon as possible, and teaching them to respond to their mother's threatening voice were all mentioned as strategies they used. Antoinette, age 57 with polio since the age of 1 year, taught her children safety by analogy. She drove by a curb and hit a ball too close to the street. She stopped and showed her boys how easily it could have been them if they had ventured into the street where she could not get to them. The women valued their role as mothers and were devastated when their children were picked on because their mothers had polio. This was something the women were less prepared to handle. Martha, age 57 with polio since age 8 years, described how her son was picked on because she limped. He complained of severe stomach aches for days before she found out the real problem. Joe liked to be tucked in and so we were in here one night and he stared at me and I said, "Joe something's obviously bothering you." And that day he was really bad and he said, "I can't tell you." I said, "There' nothing on this planet that you can't tell me." He said," It'll just make you sad." And I said, "Joe let me worry about what it makes me. I think I need to know what it is that's got you so troubled. "You won't get mad will you?" And I said, "No, I won't get mad." Well, Donald was picking on him at school. "Your crippled mother, your gimpy mom, worthless mom..." And Joe was taking it all internally. No matter how hard the women pushed themselves, not all of their children could be protected. Drugs and mental illness were difficult to battle. Charlotte, age 57 with polio since age 4 years, adopted a child who was mentally 141 ill. The child later turned her aggression toward Charlotte, which she said "zapped her strength". Of course by then I had three children, a new born, a six year old, and a seven year old. But what I didn't tell you was she was born with mental illness. That zapped a lot of my strength because she was a very high maintenance child to take care of. She was brilliant and sweet, but on the other side she was psychotic and mean and it was a very difficult time. We had to start taking her to the doctor when she was seven. She was always ....it was a very difficult time. She was very hard, very hard... we had a lot of problems with her, a tremendous amount. That was very, very hard. So I had all that at the same time too. Dorothy, age 62 with polio since age 10 years, lost her daughter to suicide after she became addicted to drugs. The event triggered grief that never eased. Her health began to deteriorate after the event as though her daughter took part of Dorothy when she died. My daughter committed suicide. She held a 12-gauge shotgun to her chest and then pulled her shoes off and pulled the trigger with her toe. That is what they determined. And us walking in and seeing it. She had called. We were at a friend's house. She asked to speak to me and then she said, "Momma." And I said, yeah? She said, "Goodbye, I love you." and hung the phone up. I don't know if it was instinct or what but I started screaming. We got to go home. We got to go home. Something's wrong. I remember it was in dead of winter. I ran out without my shoes on. I remember that. You know when you go to a horror movie and you see the house and it just keeps getting bigger and bigger. Well, that's the way ours was. The screen was unlocked. The door was locked. Joe used his key to get in. The door to her room was closed. We found her laying on the floor with a candle lit and still had tears on her face. It made a mess of her. I started screaming to Joe. Don't touch her. Many of the women pushed themselves to be good mothers for their children; some women did not have children and strove to be good role models for other children. They all took the role seriously. The majority of women interviewed did not have children with mental illness or drug problems. Some 142 never mentioned that their children may have been teased because they had polio. Those that did described feeling pain because all of them pushed to do their best for the children. MIDDLE ADULTHOOD 1974/1984 TO 1993/2003 With Time the Place Improved During their middle adulthood, age 36 to 54, the women were becoming more conscious of the environmental problems associated with having impairments. They discussed their personal and public environment, which affected their work and leisure time. It was no coincidence that the women became conscious of these problems around the time the American's with Disabilities Act of 1990 was passed. None of the women were actively involved in lobbying for its passage; they were conscious only of the after effects. The women were able to compare access problems prior to and after the ADA. Although problems remained after the ADA, they noticed considerable improvement in access at a time in their lives when they perceived increased accessibility needs. Elizabeth, age 55 with polio since 6 months of age, began to experience more access to public places during her middle adult years. "We've done Southwest and we've done American Airlines. I don't think years ago that they would have done that. See I even drive now since 1996." Elizabeth saw the biggest change in the beach areas where she and her husband like to vacation. It sounds funny to grade it only down there at Port Aransas but Port Aransas is where I've seen it the most. I mean for years, everything is up on stilts because of the hurricanes and stuff. What about ten years ago? Well, there weren't that many restaurants that didn't have steps and that were totally accessible. In fact, there were some of them that we wanted to 143 go in. Now this has been through the years. There have been a couple of times you know when we went to a restaurant [to] see if it's accessible. How do you get in? Well, there ain't nowhere. Having accessibility to travel and business environments allowed the women to take jobs and promotions they would not have been able to take years earlier. Elizabeth stated, "I came along a lot further than I ever really expected. But that is due to the times changing, the situations, the ADA." Being able to access public places also allowed the women to feel apart of their community. Janice, age 57 with polio since age 3 years, traveled due to her work responsibility and enjoyed being able to participate in after work activities. I know that there was a meeting I went to in Boston, and one of the entertainment things was to ride on a boat. Well, we went down to the pier and it was accessible, but the ramps were real steep. But there were guys who made sure that you could get up there. If somebody was in a wheelchair then they would carry them up. And that was great because then you could enjoy the things that everybody else can and that kind of stuff. Attention to accessibility at work extended into the availability of emergency services. Tabby, age 57 with polio since age 2 years, described how emergency services changed to ensure that she was safe. Initially, during an emergency Tabby was required to walk down stairs to safety. "So I walked down from the sixth floor of that office building and out to my car, which was parked close-by, but I hurt for three days after. My legs were sore, my hip joints, my knees, my thigh muscles, everything." Later, Tabby was told to wait in the stairwell for the fire department. They knew to go find her and help her out. Although this spared her and others with disabilities from trying to find a way down the stairs, she did feel some concern about waiting for the fire department 144 during an emergency. In the end if she needed to she would help herself to safety. She said, "We were not going to barbeque up there on the 6th floor landing. We were going to go down those stairs." Scooters were mentioned for the first time during this time period. These were used to diminish the effects of fatigue and provide transportation while being fun for some women. Antoinette noted that the scooters were "more socially acceptable" when compared to wheelchairs. They allowed the women access to public places if the environment was adapted with ramps and wide electric doors. When the environment was not adapted further frustration mounted up. Janice experienced frustration when her work restroom was not accessible to her in her scooter. And of course sometimes I kind of tease people at work, and say your office isn't compliant, because it's hard to get into, because I have my scooter at work and stuff. And whenever I comment about something, because I know the public bathrooms on the floor of our new building did not have a button to open the doors into the bathroom. They had a handle that you turn and the doors were heavy to open. So it was very difficult, especially because I was starting to have more problems, but I kept saying why didn't you put a button on the public bathrooms on our floor? And it was some sort of like, "well you know we did on this floor but not on that floor." So it took three years before they finally put a button to open and close the bathroom doors. The women became conscious of their accessibility needs at home during this time, too. Several women designed homes with their accessibility as the prime focus. The floors were one level with no slick surfaces. The doors were wide and frequently sliding. Circular driveways with large garages that allowed a van to open and a wheel chair lift to come out with ample room were incorporated. The cabinets were wheelchair height as were many of the light 145 switches and other household amenities. These are just a few of the accessibility designs incorporated into their homes. Disability parking also became a focus of the women's stories. When the women used a van with a scooter or electric wheelchair to access a public area they needed ample room to park and exit with their scooter or wheelchair. Other women, who did not use scooters or wheelchairs, were in need of closer parking to enable them to enter and leave the building without injury or fatigue. Frequently, the women were annoyed when people without impairments hindered their ability to park in disability parking. Pauline, age 57 with polio since age 9 years, felt strong enough about this issue that she became a volunteer ticket writer for parking violations in her city. I'm authorized by the city to write parking tickets and yesterday I wrote five in just under 5 minutes in that one parking lot. There was one where I think it was a combination of the way the person had parked. There wasn't as much navigation room as there was supposed to be and the scooter and I were kind of on an angle. I think it was a combination of the angle and somehow when. .. . I don't think I exactly slid off the seat but I think it was just that as I started to stand up because it wasn't flat, I was a little bit off balance. So I landed on the asphalt and managed luckily to get back up on my feet before I attracted a crowd. I went ahead and put the ticket under the windshield wiper and went on to the next one. The women were conscious of how their environment affected their ability to live the lives they wanted to live, both in their personal and public activities. The need for accessibility was discussed during this time period because it affected their work, home, and leisure activities at a time when they were experiencing further physical decline. 146 Willed to Success but Pushed to Decline It was during middle adulthood that many of the women began to achieve success in their lives and careers, but they had pushed their bodies to unquestionable decline in order to achieve their goals. The demands of family and work continued and the rewards they received through their achievements reinforced the need to push their bodies further. Over time, their ability to will their bodies to accommodate the will of the self was disrupted, their senses were inundated with pain and fatigue, and their emotions became labile. This was the time of further injury and of other health problems such as hypertension, diabetes, and pneumonia. Achieving Success The women were able to achieve success in their lives for different reasons and in different ways. Women, such as Alita and Lena, focused on service to their communities, as well as career success. For example, Lena, age 62 with polio since age 10 years, dedicated herself to her career as a social worker with multiple community projects. I've got two that I put up on my wall right now from when Governor Clements was in there because at that particular time, we started another group, the literacy classes. We did so much on our own time. He, when one of the times that he came down, we did meet with him. We took him out to lunch and off the record, away from publicity, newspapers and so forth. We ordered lunch and we talked a lot. I was in the chair, but I put in 18 hours, the normal things that everybody else did. Just because I was here didn't mean I can't do what was there. There are two. I mean I was going to throw them away and I thought no, I'll put them up for a little bit. They're from `87 when I was still working. I was still working, my gosh, sometimes until 11 o'clock, 12 o'clock at night. 147 Other women, such as Sarah, Elizabeth, and Kathy, measured their success in their lifestyles or in their families' cohesion. Elizabeth, age 55 with polio since 6 months of age, began to drive, travel and have new experiences, such as water skiing. The time that I can remember floating on cloud nine was the time when I went waterskiing over there at Sea World. It was arranged through the Warm Springs Foundation. I got up the nerve and we went and they had all these volunteers. They had the skiers, of course, from Sea World. Then they had all the therapists and all kinds of volunteers and everything and I mean they had every spectrum of people out there. I saw types of ski things like you never would have dreamed. They're going around the lake. But I literally remember at work, I was floating on cloud nine, higher than I had ever been. It even beat out Alaska and stuff like that. It was exhilarating. Kathy, age 62 with polio since age 12 years, toured Europe with her husband for 2 years. And then when we went again in 88 to 90. We were free to do our things. We didn't have to worry about the kids, too. We had a super time, super time. To me, it borders on a religious experience cause if we saw a beautiful sunset; we could sit there and watch it. We could find a place by the stream to park the car and watch it and just sit and watch the people, the different cultures, the different languages, the modes of dress. You could observe. I loved it. Joann and Janice are examples of women who achieved a great deal of success within their jobs. Joann had two patents on inventions and owned a business distributing them. Janice was well known within her work field despite not finishing her college degree. But then also sometimes it's like I do things and whenever I would go to a meeting or a conference and they'd say, "Oh, I've heard about you." And I'll say, "You have? Good or bad?" And they'll say, "Oh, I hear you do such and such." I'm thinking oh. Yeah, I do. I mean a typical example is a several years ago I was asked to be on a National Advisory Board. Well, 148 being on that national advisory board, I was involved with some very prestigious people across the country. ...All of a sudden, I was getting a presence across the country. No matter the reason for their achievements or the way they defined their achievements, these fed their will to do more. The self was fulfilled through achievement. After all, these women were doing what many `normal women' were not. During this time of achievement many of the women recalled feeling at their mental best. Their mental well-being was tied to their ability to achieve as well as their ability to put their situation into perspective. Deborah, age 59 with polio since 3 months, described how her insecurities left her during this middle adult years. She said, "It stayed with me, I don't have it anymore, but its taken years and years to...probably when I was in my 40's when I realized what a cool person I was." Janice, age 57 with polio since the age of 3 years, felt better about her self because the environment was becoming more inclusive. For the first time, she knew she deserved to be included in work activities. She said, "Because I kind of thought I deserved that because I shouldn't be excluded." The change in mind set was not reserved to work or leisure related achievement. This was also a time when the women who had previously stayed with abusive spouses described changing their attitude towards their abusers. Janette, age 65 with polio since age 13, stated she decided she was not going to let her husband abuse her anymore. Well, when he would say you have to do this or that. I would say no. He said, "Well, if you don't pay the bills we are just going to let them. I said, "Turn them off! I am not going to do it." I just decided I was going to be a 149 strong person. I was working just like he was and if he wanted to leave just cause I wasn't doing all the things, he could just leave. Darlene, age 65 with polio since the age of 5 years, described how she learned to adapt to the animosity she felt towards her alcoholic spouse. During her middle adult years, he had quit drinking and she began to adapt to their new relationship. She valued being married almost 50 years; this was an achievement to her. She also loved him. Although he was no longer an alcoholic, he continued to have many verbally abusive, controlling behaviors, which left Darlene to work towards acquiring peace in her life, which she described as "peace at any price". I think that's the way I can live with it. There's really not anything you can do about the past. If you dwell on it, you're just going to make yourself miserable so I just try to leave it alone back there. Yeah. Peace at any price. Pushing the Declining Body Over time, the women continued to push their bodies until they could not do it anymore. The women kept going after their bodies had told them they were too tired to continue. Janice, age 57 with polio since the age of 3 years, described how hard she worked during this time. My boss came to me, he came to me and he said, "I need your help." And I said, "Sure." Of course I was still working a 10-12 hour day. And he says, "We're going to have to do an all nighter to get this done." And I said, "Ok, we'll do it." And we did. We were there for two days, overnight. I mean we just got food brought into us and we did it. It was a manual process because we had to meet the deadline. And that satisfaction, I would not have done it any other way. And the weariness and the tiredness that we both felt. The women tried to keep going but they had pushed themselves too much. Antoinette stated, "So I felt it was trying to teach, trying to keep up with 150 everything." Deborah, age 57 with polio since 3 months, confirmed this when she said, "Then my health really started going down because I was pushing myself too much. Well, I was working long hours and not really catching up in my rest and I was ignoring it." They pushed themselves year after year for various reasons. Charlotte, age 57 with polio since age 4 years, stated, "She always kept saying, `you need to leave it when you leave the office.' And I wasn't. I mean I'd wake up in the middle of the night and write things down, and so my whole being was involved in it." Some women reported a sense of urgency during this time. "I felt an urgency in the good times to do everything that I could do because I wasn't sure when the next bad time was going to come up. It could be any day." The women pushed themselves until they perceived they had declined too much. Deborah, age 59 with polio at age 3 months, found that she was unable to get up from the toilet at work. This revolution was incredibly difficult for her as she asked a co-worker for assistance. She said, "It was mortifying. It was awful mentally. I saw the enemy and it was me." The physical, cognitive, and emotional symptoms indicated to the women that their bodies had declined in function. Their ability to will their bodies to fulfill the will of the self was disrupted, their senses were inundated with pain and fatigue, and their emotions became labile. These symptoms interfered with their ability to do activities and made them aware of unwanted sensations and feelings. Charlotte described her work at a law firm. I was tired all the time and I would come home and just fall across the bed. But at least I was paying the bills. ... But my body couldn't hold up to and I had several physical collapses. I fell at work all the time because my legs would give out from under me. I had no life, no social life, 151 because I'd work, crawl home and make it no farther than my big chair. And that's where I would wake up in the morning. So anyway, it was determined that my body was not holding up. Tabby, age 57 with polio since the age of 2 years, stated she was so fatigued she was falling asleep at work. Her fatigue continued until she broke her leg then ultimately retired on disability. I would lose track of what was going on. I, on a couple of occasions, I fell asleep during the conversations and would startle awake. Just nod off and I'd say I'm so sorry. I lost track of what you were saying. Can you tell me that again? But then on the 25th of October of 2000, I was walking out of the house to go to work and I stepped in a little hole. Like a little flower bed but it's only about eight inches wide on the front step and the driveway and I broke my fibula. Sarah, age 61 with polio since age 4 years, described how the pain overwhelmed her while she was a teacher. You just stayed tired. Then you got to where you did hurt so much you know. My hips hurt so bad and my hands hurt. My neck and my shoulder hurt so bad . I've tried everything. Even rubbing my feet with my left hand. But then if you get to using it a bunch, then that side gets to hurting. Feeling cold deep down into their bones was also described by almost all of the women. This feeling of being cold could not be relived by the usual methods of warming the body. It was described as the cold one feels when they have the flu. The person can apply as many blankets as they want but the cold feeling will not go away. For example, Sarah, age 61 with polio since age 4 years, described how she could not warm her extremities. I could not get warm and you felt like were kind of stupid sitting out here. I'd finally get to where I would take a bedroll and put it around me. You've got on a cap and gloves, a coat, and sitting in a bed roll. These other people are sitting out here. They've on their coat and stuff but they're not cold. I stayed cold. 152 Many of the women also described emotional changes during this time. The exhaustion coupled with not knowing what the exhaustion was from set off numerous emotional reactions. Antoinette said she felt that if she ever sat down, she would never stop crying because there "was never any catching up place to get." Deborah, age 59 with polio since 3 months of age, was unaware of what caused the emotional changes and that scared her. And I was scared. I was very scared because I cried at the drop of a hat, and I didn't really realize that was exhaustion. I didn't know why I was crying, and it really upset me that I was crying. That felt funny. But yeah I couldn't control it and it really, what really finally got through to me, you can't even peel two potatoes in a row with out resting and crying. Rosaria, age 63 with polio since age 2.5 years, began to have panic attacks as she tried to push her body to continue work while exhausted. It was that I felt like I just didn't have the control that I wanted to have. It was difficult getting things and I don't know . . . and on top of it, I was hurting. By that time, I was. Then I started having anxiety you know panic attacks. So it was just the stress and a little bit of everything. With the physical and emotional changes, some of the women began to have problems with cognition. Some would describe problems communicating while others stated they had memory problems. For instance, Elizabeth noticed that she was turning her words around. So then it went from bad to worse, you know hours. And the fatigue started picking up and I mean there would be times when I'm talking to my manager and I would say, I'd be telling her something or other and I look at her. Did I make . . . I knew I didn't say it right somehow. Did I make any sense? Did you understand what I meant? He said well, it didn't come out right but I know how you meant it so in other words, it's a case of turning words around. 153 Donna, age 56 with polio sine age 5 years, found that she could not concentrate well. She said she cut the lights in her flower beds when she was trimming the grass because she could not focus on the task. It was during the time that the women first described their experiences with other health problems. The women frequently mentioned hypertension, diabetes, high cholesterol, osteoporosis, and lung disorders. Other diseases that were mentioned were thyroid abnormalities, pernicious anemia, major depression, reflux, arthritis, migraine headaches, mitral valve prolapse, immune system disorders, breast cancer, dysrhythmias, and rosacea. Several women mentioned having hysterectomies for unknown reasons. Only two participants mentioned problems with menopause. The changes in their bodies were disruptive but the women did not stop pushing themselves to be independent and productive citizens. Janice, age 57 with polio since age 3 years, recognized the difficulties but did not believe she could have done it any differently. It is kind of like, well, what else would I have done? Or would I have felt that I would have done the job right? But there are times when I'm hurting physically and I'm just thinking, "Gees, why did I do this to myself?" But I don't know if I'd go back and do it differently. Even maybe knowing the outcome, I don't know if I would have done it differently because I was that way. It's just always like how Mother and Dad reared me. No, they didn't raise me to say, "You've got to be the best; you've got to be the winner," and that type of stuff. But you've got to take care of yourself and make you own way. The efforts the women put into their lives were not regretted unless the women experienced difficulties at work that they perceived were beyond their impairments. 154 Some of the women did have work related regrets. For example, Tabby, age 57 with polio since age 2 years, described how she regretted working at a low wage job because it was not worth the effects it had on her body. She stated, "I was making big money for somebody else. That somebody else didn't care about the little people. Big corporations just don't, not that much. And it's true all over the world." Others, like Joann and Antoinette, regretted their work only because they were treated poorly before their retirement. Antoinette, age 57 with polio since the age of 1 year, described how her employer attempted to rid the school district of all experienced teachers because they cost too much. This was upsetting to her because she felt the effects of age discrimination at a time when she needed support from her employer to continue to work with her increasing impairment. We got the feeling that the principal was serious when he said he wanted young, dedicated teachers. That's a hint. So we retired, six of us did.... But that's not right. Damaging people's lives. Not recognizing the quality of people that work in your building and honoring them. If teachers don't honor each other, who will honor them? Becoming Conscious of their Bodies' Needs The women realized they had not put their energy towards caring for their self or for their bodies. They had focused their attention on their work and families. They had spent years developing strategies to dismiss or overcome their physical changes. Typically, the women knew there was something different with their bodies, but were not aware of what it was or what to do. As Janette said, "I mostly took care of them and I neglected myself". Charlotte, age 57 with polio since age 4 years, stated, "I was conscious of my needs and very conscious that my needs were not met. That time to me was a time of just getting through the 155 day." This changed when the women stopped the activities of their daily lives so that could become completely conscious of and attentive to their bodies' needs. The women became conscious of their bodies needs because they could not achieve their will without their bodies. They recognized that their bodies were instrumental in their lives. Beatrice, age 60 with polio since age 5 years, stated, "Well, it pretty well gets to the point you just can't. When you can't walk from one room to the next, you can't. You break in a sweat. You just can't. You have to figure out that you're going to have to listen to somebody besides yourself. I had to give in." Responding to their Bodies' Needs The women responded to their bodies' needs by decreasing their social activities, increasing the help they received from others, increasing their use of assistive devices, seeking help from post polio groups and specialists, and eventually many retired from work. These responses were gradual and not without consideration. The need to continue to work despite their physical changes required that the women quit their social activities. For example, Janice, age 57 with polio since age 3 years; quit her community choir activities because of her declining abilities and demanding work. They had the Community Choir. I tried out for that and became a part of that and really enjoyed it that one year that I was with it. But then the postpolio was starting to set in and it was too hard on my job. I was working a 60 hour work week on more of my own volition and trying to keep up with the community choir so I had to drop community choir. I had to drop community choir. 156 Deborah, age 59 with polio since 3months of age, stopped doing activities around the house then her husband started doing them. She said, "It was like I can't. I stopped doing things just a little at a time and Joe would take up the slack and not say anything. It was like honey, I just can't do that today." By this time more information was being distributed on post polio syndrome (PPS). Many women sought out the help from experts who might know how to help them with their symptoms of PPS. Others diagnosed themselves and sought help from other polio survivors who knew about PPS. Antoinette, age 57 with polio since the age of 1 year, described her first encounter with a physician who was an expert in PPS. She was told she needed to retire and start using a wheelchair, which was not what she wanted hear. She and others would have preferred a cure. Research indicates is what they said. Research indicates. That was like wow, that's awful negative. Are you sure about that? They thought I should have a wheelchair and I should quit my job and I should get them to take care of the children. Apply for all these social programs and I wasn't ready, Tracie. I just thought I was tired a lot and so after listening to that, I just started reading about it and I figured well, I'll go as long as I can. Tabby, age 57 with polio since age 2 years, sought her information from other polio survivors. She said, "I had noticed that. You know that was at work. I just didn't have the stamina, and frankly, I had been finally reading stuff on the internet about post polio. Well, I've go that. I didn't know that's what that's from. Is that what I've got?" Tabby responded by following the advice she learned from other polio survivors. 157 The women began to use more assistive devices when they felt the need. Some took the advice of health care providers or other polio survivors and bought the devices, but they did not use them until they saw the need. Antoinette, age 55 with polio since the age of 1 year, bought a scooter after being advised by her physician and realizing the tax credits she could receive when she purchased her vehicle. She described her experience when she selected her first scooter. I kept saying I'm not going to be sitting in it. What difference does it matter if it's a cushiony seat? It's going to be in the back of the car. So my final word to him was I'm going to buy it, but I don't want it and he says okay and he put it in. He put in the lift. They made sure the lift was in a position so that I could use it. I said yeah, yeah, yeah, yeah. Okay, put it in. Okay, that's great. I just took off. In all honestly for about a year and a half, it just bounced around in the back of the car. Eventually, the women used the assistive device that they felt helped them. Then over time the assistive devices they used would change as secondary problems occurred because of how their bodies moved with the use of the assistive devices. For example, Alita described how her body changed due to the use of different lifts in her shoes. What happened was and what I know now is when you have walked a certain way for 50 years of your life, you cannot change my gait. Because when you change my gait, it's going to show up in some way. So they were forcing my knee to change my gait, by anything they did. We don't know if the slipped disc came as a result. I think there was one thing they found out that was a result of the lift. They found that there was some damage done where my hip hit on that ball, when it comes around from my hip down to my leg. It had pushed the bone up to the point that it's straight and there was some damage done there. The changes in their bodies due to the use of their assistive devices led the women to adapt with the use of different devices. For instance, women described using a manual wheelchair or canes until their arms and shoulders became 158 weakened and painful from lifting their bodies. They would change and use an electric scooter until their shoulders were worn from being extended outward to steer the device. They would ultimately move into an electric wheelchair because the arms could rest while the hands manipulated the joy stick control. The question of whether or not to retire from work, at home and/or office, in order to prevent further decline was not an easy decision for most of the women. Only Elizabeth found it to be an easy decision; she wanted to spend more time with her husband. Others debated the impact of the decision. Did they have enough money or benefits to live into the future without working? Did they think they were of the appropriate age to leave the work place? Would they miss the social interaction they had at work? Does my employer want me to retire? Could I continue to work and take care of myself? These were among the most common questions they asked of themselves. Sarah, age 61 with polio since age 4 years, described how she arrived at the decision that it would be a good idea to quit her teaching job. She felt that by not working she would have the time to care for herself more because she would always push herself at work as a teacher. If you have a job and especially the way we were raised and stuff, you do that job and you do it right and not only that, especially teaching school where you're dealing with kids, it needs to be done. You can't just slack off. You can't just let or I didn't think you could just let them go and you just . . . It needed to be for the kids' sake. It needed to be done that way. You needed to be there. So, not working just kind of gives you the freedom if you get up and you feel all that bad, unless it's something that absolutely has to be done or even then, you just kind of do enough to get you by on instead of thinking it had to be the whole. 159 Pauline, age 57 with polio since age 9 years, described how she debated retiring. She was a single woman and that made the decision a bigger risk for her long term future, but again the needs of her body won out. And if you'd have told me I would have had to quit working by the time I was 38, I would have thought you were crazy. On the other hand, I got to thinking about it one time. I said well, they replaced me at this place with 2.5 or three people and they replaced me at that place with 1.5 people. In full-time equivalent, I've already put in almost my 20 years that they usually think of as a career. I had some money in savings and then it helped when I went on Social Security Disability. It's still worrisome but I'm lucky that I already own my home but it's still scary. It's just how am I going to be able to manage? I knew that if I really needed money, my brother would help and mom probably would. She might make my life hell if she did but I thought well, that could be okay. Martha, age 57 with polio since age 8 years, left her job as a scientist at the age of 39. When she retired she devoted herself to her family and her health, but when she was employed she was made to feel badly for trying to do that and work at the same time. I actually had the next to the last guy I'd work with had written me up because I was getting reluctant to work the late hours and he thought I ought to be put in another job. And I have the item somewhere around here that he wrote me up because I was wanting to put family and my personal health ahead of the job. Needless to say you don't wait for someone at work to say, "I think you ought to quit", you go ahead and take care of it. So, I was actually 39 when I walked off the job. Threats from Increasing Dependency The women responded to their bodies' needs and these responses gave their bodies rest, but the responses also threatened their perceptions of themselves. It threatened who they were raised to be from the time they were children. When the women donned their braces and other devices, they again 160 donned their childhood symbols of disabilities. It made them question their ability to live the life they believed they were raised to live--independently. Judy said, "I was very unhappy when the doctor told me I was going to have to go back into a brace. That I did. I cried for a couple of days over that." Rosaria, age 63 with polio since age 2.5 years, had pride in using a cane through her young adult years so when she was faced with using crutches again, she knew she did not want to return to her past levels of dependency. That was one reason when I was working that I knew I had to do something because I knew I was having problems but I was afraid to go to crutches because I knew once I went to the crutches, I would become dependent and I wouldn't be able to go back. Their responses to their bodies threatened their present view of themselves because it threatened their perceptions of their ability to perform roles. Antoinette who quit her job for reasons related to her body and her working conditions described her ambivalence towards the retirement. Everybody else is retired. That was just a strange feeling, a special group, but a strange feeling. I'm not sure if I'm used to it yet. I'm really getting off to the part about not having to go to work and not having to deal with the pressures of being a teacher but I'm not sure I'm ready to lose my identity, as you know, like in fact, I still say I'm a teacher. The women felt the changes threatened their present identity because they did not want other people to redefine who they were as women. For example, they did not want others to define them as being ill or sick. Rosaria said, "I didn't want people to say, "Oh, well, you know she's... I don't know. She's sick." The women were certain they were not ill. Finally, it threatened their future because it left them questioning who they would become and how they would be treated. They valued being independent 161 and did not want anyone to feel sorry for them. Lena, age 62 with polio since age 10 years, said it best. I've never liked it when everybody would treat me special just because I'm here. [In a wheelchair] No, if I don't feel sorry for myself, then nobody is going to. I have no use for you. I'm sorry. Go feel sorry for somebody else or feel sorry for yourself. But don't treat me special because I'm here. No. Charlotte questioned her decision to quit her work. She was having problems falling at work because of fatigue and instability. She married a wealthy man that insisted she stop working, but after his death she moved in with friends because she was left with nothing. We didn't have a prenuptial; I had given up my job, and my insurance and everything when we married. I was hesitant to give up my job and my security in that, and he was a very wealthy man. And he said it's silly for you to work. I want you to be able to travel with me. I had some counseling from different people and I finally did give up my job when I married him. It was a fear thing, I mean me wanting to keep my little thing over here so I'd be safe and I finally knew that if I married him I needed to trust him all the way so I did. So, I ended up with nothing. Most women who were married benefited from being married when it came time to retire. Their husbands' income and benefits provided for them, too. Alita said that she was unable to save while a single mother because her teacher's salary was not enough. She lived month to month. After her marriage she was able to retire and live comfortably, something she would not have been able to do if she had not married. Caring for Aging Parents The women frequently told stories of caring for their aging or ill parents during their middle adult years. These activities were stressful for the women 162 because it required they balance caring for their parents with the usual activities of their lives. Some were working during the time their parents needed them. Rosaria described how her life at this time became a vicious circle. Anxiety attacks, yeah, anxiety, yeah, because I was working. I had the apartment. I was working. Then after work, I'd come and pick up mom and go see dad until about 7:00 and then go back home and do lesson plans or grade papers or whatever and it was a vicious circle. But like if anything happened at the nursing home, they'd call me first. Several times they'd call, he fell or he whatever, he's crying or whatever. So it was very stressful. Those last years dad was in the nursing home, it was real . . . on all of us. Or they'd call mom and I finally told them, don't call her because she gets upset and she has no way of getting there. Oh and then there was a period where he would call... He'd ask us, "When are you taking me home?" But then some days he would call and he would cry. It was very difficult for all of us. Then she'd worry and we knew we couldn't really do much except go and see what the problem was. It is unclear why the responsibility to care for their parents fell to the women. Many had siblings that could have helped. Rosaria admitted that she resented trying to care for her father while she was trying to work. She had a sister that was not as helpful. Rosaria said, "There was a period where I kind of resented it. When I was working because I was working and then I had to worry, take care of everything here. I kept thinking wait a minute. She could do it just as well as I can." Despite the occasional feelings of resentment many of the women wanted to or felt an unbreakable obligation to care for their parents. For example, Candice also took care of her mother during this period. When asked why she felt it important to care for her mother who had Parkinson's disease she said, "Well, because she was my mom. She had a tough marriage with my dad. I just felt like it was my responsibility and it just felt like I had to do it, needed to do it." Darlene 163 felt a very similar way when she said, "But I was with them both when they died, that was important to me.... I guess to say I've done all I can do." LATER ADULTHOOD (NOW) 1994 TO 2004 Expecting More from the Time and Place The women were living in Texas during a time of remarkable progress in society but despite the progress the women believed that many of the details that could have made life better were overlooked. Many of the women had access to the internet and to disability transportation; many places were accessible now that were never accessible to people with disabilities in prior times. The difficulties, however, were in the details that were overlooked. Retrofitted buildings did not always consider the needs of people with disabilities, and many women were segregated into unwanted areas when going to the movies, traveling, or attending school events. Buildings remained difficult due to slick floors, narrow walk ways, steep ramps, low toilets, and unmanageable doorways. Frequently the women were prevented from enjoying activities such as shopping with children or friends. It was the time of the internet, which many women took advantage of during their time at home. The women used the internet for shopping, information, and communication with friends. Sarah described why it was important to be able to gain information from sources such as the internet provided. I think where used to you thought like the doctor or whatever was the authority. The teacher was the authority, and in most cases, they probably did know a lot more than anybody else to now there's so much out there and so much more that if you don't know. That's when... if you don't have a little bit of knowledge of what you need to ask, need to know, 164 you're really stuck like going to the doctor or anything else. So I think you've got to know. You've got to do a little more for yourself. Be a little more responsible for yourself because there is so much more knowledge there. I didn't think I would forget but the amount of information that's available to us now that wasn't. It just overwhelms you of how much is out there. There's no way one person anymore can know all of that so you've got to know for yourself. I think you've got to. Patsy used the email daily; she had created a Christian website. She said, "I wasn't on line Saturday at all and Sunday afternoon when I got on, I had something like 255 or something. Not junk mail. It is regular emails." This filled her days when she found little else to do because she had moved in with her sons where she found herself alone a lot. She also had difficulties with transportation. The women who lived in urban areas were fortunate because they frequently had access to transportation designed specifically for people with disabilities. The women had to apply for the service with an application and letter from their physician validating their impairment. The bus systems could be contacted to pick-up the women at their homes at a specific time then they would be assisted to the bus. The bus would take them to their desired destination at a low fee. Later, the bus would take them back home. Urban areas were also equipped with taxis with lifts designed for wheelchairs or scooters. Few could routinely afford to pay a taxi though. These services were very important to many of the women; however, many women in rural areas were without similar resources or services. Resources were needed in order to remain socially active during this time. For example, Pauline needed two different vehicles to accommodate her wheelchair and scooter depending upon where she was going. 165 I got one of those (Buick) to replace a `79 Pontiac. There's a hoist in the back end of the Buick that will attach to either side of the seat so I could put the wheelchair in the back of the Buick. Then I also have a `96 fullsized Ford van and it's got lift equipment things on it for the scooter. So I have options. The scooter is great if I'm going shopping and stuff like that but if I'm going out for dinner or something like that, I'm probably going to load the chair in the back of the Buick. I do have to walk and stand to load and unload the chair but most of the time, that's what I'd rather do. If I just really don't think I want to be standing and walking then I'll just go ahead and use the scooter. It'll pick me up and deposit me inside the vehicle and all I have to do is transfer to the driver's seat and I'm on my way. I can't put the chair in the van, in the full-sized Ford van. I can only put the scooter in the Ford van. If the women were unable to obtain these types of costly resources, they were unable to remain active, especially if they lived in rural areas where disability public transportation was not available. Difficulties were also reported when buildings were retrofitted for people with disabilities. The women appreciated that people were attempting to change their public buildings to give them access; however, they were frustrated when an accommodation was present that did not work. Pauline noted that, You just never know a place may say that it is handicap accessible and maybe it is and maybe it isn't, and that's just so much effort...the logistics are just so much more complicated than they would be if we didn't have this to deal with. But there are facilities available now that weren't available back when I was a child. For example, ramps that are too steep cannot be walked up or ridden up. Alita said, "I can't do that. My leg just... because it just doesn't come off the ground very much. It's just hard. You have to really lift it to go on a ramp and slant. I end up pulling up from my hip to get it up so if it's a ramp, I try not to do it." Janice described her problem with retrofitted buildings when she went to an older building looking for a restroom she could use. "And I got up, went to go use the 166 restroom, and of course, not all bathrooms are ADA compliant. So, you have to find one that is, you know because they're appropriately marked." The women knew they needed to plan in extra time when trying to go somewhere. It was never a good idea to wait until the last minute to use the restroom. The women thought it would be nice if people with disabilities were consulted before retrofitting an old building. On several occasions the women noted that some places were accessible but once inside the buildings other problems occurred. Many women stated they were placed into special holding areas for people with wheelchairs. Deborah was escorted off a plane and her wheelchair was put into a small holding area facing the wall. She was told to wait until her next flight. Needless to say she rebelled and began to tour the airport. Elizabeth critiqued the seating in movie theatres. But then I realized after a couple of years. See I wasn't getting the surround sound because I was sitting underneath it. And people were putting all their baby carriages there. So, finally one time I discovered how much greater the sound. I'd just go down to the... I mean I'll do it at any place. But I'll just go down the isle where there's an end seat and I just nudge 2/3 of my chair in. Yes, I stick out in the isle but even though it's a neighborhood theater, they've never, ever told me I couldn't do that. It's a little dark. People come in late, they might trip over the back of the chair a little bit but nobody has ever complained. They don't tell me anything. So I really don't care to sit at the back. One time I went to another theater. They had talked about wheelchair accessible. Yea, yea and they had me down in front. I said no way. Well, I sat through that one but never again. Judy had difficulty with being placed into a service lift, which put her on display for everyone to see when she went to her daughter's school recital. The lifts were difficult to manage, made her dependent upon an operator, and embarrassed her because she was displayed in a noisy lift. 167 I said, "Have you checked to see if it's accessible for me?" She said, "Oh, yeah. There's something, there's something." And the something turned out to be a lift. I hate lifts. Now, I won't go anywhere where there's a lift. I had to get on this lift and it sort of puts you on display and I hate that part of it. The lift makes so much noise that wherever anybody is, they're going to turn around and look. I thought well, this is awful. They even have a class of . . . they have handicapped kids that are all in electric wheelchairs. Some are electric and some are push and somebody has to push these kids. They can't do it themselves. How could they possibly do something like that when they have all these kids? Now granted, their classes are probably on the bottom floor but at some point in time, you know these kids have to get upstairs for something. Other problems occurred when the women would try to visit friends or family. Many friends and relatives did not have homes that were accessible. The women found themselves no longer able to go to private parties because they could not get in the homes. Betty would drive up to her sister's house and her sister would come out to sit in the car so they could talk. Joann described how she would go sit in her friend's yard but was unable to go in her home. In a time of so many accomplishments and conveniences the details that make life attainable for women with disabilities were being overlooked. Focusing on the Body As the women discussed their current lives, they told of focusing more upon their bodies. Their bodies were tired and in pain, which demanded that they direct their attention to the physical aspects of being alive. They could not consistently control their bodies in the way they had in earlier years. They enjoyed life by attending to their bodies while taking advantage of what their bodies could offer them through their senses and their minds. 168 The women described their pain with great detail. Many had multiple types of pain in different locations. Pauline described the pain as similar to the muscle aches many people feel after exercising for the first time, except the ache is 10 times more intense and lasts 10 times longer. Some women had pain only when they were active, while others had continual pain. Judy described the experiences of having four different types of pain in her thumb, shoulder, knee, and back. When we last spoke, her pain remained in her knee. Well, I have the pain in this knee. That it is, well, it is right above the, like below the knee cap, just barely above it. I guess it is where my leg hyper extends. It is where the tendons, the muscle, whatever, touches the, maybe there is nothing there. So it is bone touching bone. I don't' know but it is. It is just a sharp pain but the minute I am off of it the pain is gone. You would think it would linger but the pain is gone. Dorothy had continual pain that she took daily medications for without relief. She said, "I'm in terrible pain, today being one of them. ...I knew there would be pain but not like this." It worsened when she tried to go to bed. In the following text, she described her feelings of pain when she tried to go to sleep. Usually by 5:00 [pm] I'm ready for a lay down because by then I'm in quite a bit of pain. Then we lay down and then the battle is on because of scoliosis. It just takes several hours for my body to relax enough for sleep but I've got a hospital bed. The top comes up and the leg part does, too. So I have to keep it up like that and just gradually lower it as my body will straighten out, the muscles straighten out. Kenneth does my . . . has to do my good leg. When I'm laying there with just the feet part up, he pulls it straight up in the air for that sciatica nerve and oh, that helps so much. Usually we don't get out of bed except for to go to the bathroom. I use my walker. He helps me get out of bed. I use my walker. I have a potty chair and he holds on to me. Darlene had severe pain that led her to have an elective amputation of her leg. The leg that was not impaired because of polio had developed severe osteoarthritis, 169 which was painful. She debated the amputation for several months. Then decided it was the only way to deal with it. She described how disappointed she was when the pain returned to other parts of her body after her attempt to permanently rid herself of pain. Severe pain. I couldn't stand up. I couldn't sit. I couldn't lay . I just had to rotate all the time. And then I had the surgery and it was quite successful and I went about five years with nothing else. Then like I said, it was just snowball. I've had two surgeries on each shoulder, two on this hand, and two on this hand. I had four on that foot and then they amputated. They made two revisions on the amputation, another back surgery, my neck three times. So it's just been constant orthopedic. The pain forced the women to focus on their bodies needs, which meant decreasing their activity and trying different pain therapies. Darlene used a muscle stimulator at all times, as well as, multiple pain medications. Judy had been to a physical therapist several times. Martha stated that her pain had improved after she began to take medications for her arthritis. Nowhere near like I did. I mean when I saw my internist in the end of March when we were talking about what to do and which one of the medications or whatever their magic acronym is for the stuff like Enbrel, and I had been on . . . we were talking about what I was taking. I was taking Vicodin two of them at a crack four times a day. Yeah, I don't have near the pain I had. I have taken Vicodin again but not on a regular basis. Basically, I'm not in pain per se it's just I'm lethargic. Weakness and fatigue were frequently reported problems. Cindy had noticed that she was losing muscle mass. She said, "It didn't start getting weaker until I started losing muscle mass. It was weak but it never was that weak. Lifting my arms to turn the air conditions on, lifting a skillet, I don't dare do anything with this hand." The women found it difficult to express what the fatigue felt like, except that it was overwhelming. Pauline said it was like recuperating from being 170 bounced around in a cement mixer truck. Charlotte described how the fatigue would hit suddenly and felt like all her blood was drained from her body. Oh, here's an example. This is . . . I think most women . . . older women my age will understand this. But you know how women will need to go to the bathroom to urinate but they will be able to hold it for a long time? But then there comes a point in their life when all of a sudden without any warning boom you made a big mistake by holding it that long. But you had no warning and it felt just the way it always felt before when your bladder was full. But you knew you had a certain amount of time before the sphincter just totally wouldn't let you hold it anymore. But when you get to a certain age, you don't have that control so it's like that, but you don't have a warning either. It's like that. It was like that. I still did everything like normal. Still had the normal feelings. When used to, I could make it until I got home or I could make it until I could get into a situation where I could rest. But then all of a sudden it started happening where boom. I didn't even have that prerogative, just everything went. Like somebody has drained all the blood out of your body period. Controlling parts of their bodies was problematic for several of the women. This was especially difficult when they were being assisted by other people. It may be expected that people can control where their extremities go while they are being lifted or moved from one position to another. This was not the case for four participants in the study. Elizabeth described how her inability to control her leg made her vulnerable to injury because of her osteoporosis. And my legs are the most sensitive. They're really the most sensitive because I have the least amount of control. If someone is lifting me, you know I've got to make sure my legs don't get bent the wrong way because I know if they would break, they'd never heal. That's mainly the issue. When somebody is lifting you, you know, you don't realize it. Most people have some control. I'll put my legs like this just so I'll have to pull over this one to keep it from getting somehow . . . if something is too limp, it can get left behind somewhere. Believe it or not getting into vehicles and cars and dashes and seats and stuff like that, it's not real easy. It's not easy on the person lifting either but still. 171 Balance was another problem for the women, and it caused them to focus their attention towards their bodies. This was a frequent cause of falls so the women knew they could not dismiss the problem. Patsy had a problem with balance and did not want to injure herself, especially her arms. She said, "Lord, don't let me fall and injure this right arm again so I can't take care of myself. I can't reach anything, nothing with this left arm. I can't take care of bodily functions with it because it won't reach." Charlotte had problems with balance, too. She tried to help her daughter wash her dog, but fell when she lost her balance. The fall left her feeling useless and vulnerable. I mean it doesn't take anything. It takes nothing to make me lose my balance so I just fell straight back. Just full body straight back on my back and I knew I was going to hit my head, the back of my head on the concrete. So I used my neck as best I could to try to hold my head up and my head did hit but not as hard at it would have. But in the process, I whip lashed my neck. Anyway, I started crying like a baby and ran in the house. I didn't run but I mean I went in the house. Went and got in my bed you know like it was going to go away. My arms were bleeding and stuff like that. Finally, several of the women described breathing problems. Jackie used a device to assist her breathing at night, which relieved her problems. A year ago, however, when she was having the most difficulties with her breathing she thought she would not live much longer. Elizabeth said her breathing problems were brought on by humidity and eating too much. Not as a rule unless I, believe it or not, overeat. If we go out to eat and I eat too much, well, then that makes it harder to breathe. The fatigue usually would manifest itself in my breathing. If it got hard to breathe, then that's where I would notice it the most. 172 The women were focused upon their bodies, but that did not mean they were without enjoyment. The body could provide pleasurable stimulation along with the noxious. Charlotte would go to a church made of logs so she could touch and smell the logs, pleasures that many people take for granted or do not consider embracing. Sometimes I'll drive down there if the day is pretty and the church is closed, of course, and it's not because it's a church that I go down. It's because it's like it's in the mountains and it's these logs. Beautiful, very beautiful. I'll sit on a log outside of it and just look at it and look at the sun coming down, the rays coming down through those pine trees. Sometimes I'll go up and embrace the log and smell the smell of a log. It reminds me when I used to be able to travel to the mountain several times a year. We loved log cabins and fires in the fire places there and stuff like that. The smell of the pine needles and all that, so I do that every once in awhile. I think it's strange. If someone came up and saw me hugging the side of a log, but it's not because I'm hugging it to get a hug. It's just because I'm hugging it so that I can feel it and smell it, and you know it takes me back in time. I like it. I appreciate it a lot and it resembles something different to me than I'm sure almost anybody else that drives up there. Many of the women continued to enjoy various activities, such as sex, gambling, and boating. For instance, Dorothy and her husband would enjoy sex with caresses and with the occasional sexual banter. Betty said her sex life was very good. Kathy and her husband would go gambling at a moments notice. They also enjoyed traveling whenever they could. Jackie would go boating because she loved it. Because I want to do it. I've got that boat sitting out there. I no more need that boat than I need a hole in the head but I've always wanted one and I've got it. Its three years old now and only has, I think, 40 hours on it. If it goes out five times a year, that's been a lot, but it's there and it will be there. I'm not going to sell it. 173 The women were focused on their bodies but that did not mean they could not enjoy the pleasures of their senses. Working to Do the Simple Things Rosaria defined disability as the need to attend to the details that other people took for granted. Lena believed that everyone had a handicap of some sort or another. She added that, "There's many things that you cannot do that other people can do but that should not break you down." These comments seemed fitting as the women discussed the way their ability to attend to the details became more challenging. The women's bodies were changed by age and polio but enabled by creativity. They figured out ways to do what was needed. The women told stories of being able to attend to multiple things at once. After all, many took on multiple roles throughout their lives. Now they found that they needed to focus on one task at a time in order to get it right. Often, that task was something many took for granted, such as getting dressed. The detail of getting dressed in the morning was a challenge for several of the women. The ability to will the body to action was impaired so willing it to get dressed was a challenge. For instance, telling a leg to lift upward so that the arms could put on pants or a brace was difficult. Often times, their legs were heavy and the brace even heavier. The weakness and pain would cause them to hesitate and the experience of getting dressed would become a lengthy endeavor. Janice described how it took effort for her to dress in the mornings. First of all, a typical day, when I get up in the morning, is it takes me 2 hours to get ready to leave, because it's difficult for me to move around. But I'll wake up around 7 o'clock, of course I'm very fatigued now, and 174 especially with my back injury, that it sometimes...to move to start moving in the morning with my arthritis and my back injury it is very difficult to get around. But I get up, sit up, get the nerve up to get up and go to the bathroom; of course, I have to go to the bathroom, go sit on the toilet. Because I don't have my brace on, that walking into my bathroom, the 6 feet that it is I guess to get there is difficult. I have to take a step at a time and hold onto the supports that I have and everything. Go to the bathroom and then get in the tub, and I have a shower seat that I use in the bathtub. If I don't have a shower seat I can't take a shower because I cannot stand up anymore. So that's an effort, to get up, to stand up, to sit down on the shower seat and swing my legs in and then shower. And then it's generally about 20 minutes from whenever I go into the bathroom to when I'm through with my shower, dry off and then walk back to the bed to rest. And then I'll rest there kind of cooling off, or just resting, I don't know, it can be 10 to 15 minutes, or it can be 30 minutes or more. ...My legs are heavy, so that's anther effort too, but it is. It's just an effort to get everything done. In fact, I happened to see... I think it was a TV show, not very long ago where they were showing a paraplegic who was dressing himself. And I was watching and I thought that's me, you know, because we can't just jump in; put our feet and legs in our slacks, or feet in shoes and stuff like that. It's just a very methodical thing. The other thing too is putting my brace on, if I'm in a different environment, if I'm on a different bed, a different height of a bed, or sitting in a doctors office redressing, its very difficult to put a brace on, because I have to have a certain height a certain ability, because I have to lie back to do certain things. So getting dressed is an effort. Others reported difficulties with things like combing their hair or putting on makeup. Dorothy would no longer wear makeup because it was too difficult. She needed the energy for other things in her life. Judy said she cut her hair off short because she couldn't comb it anymore. Problems with willing their bodies to action required their minds to find solutions for doing tasks that many take for granted. It was essential to recognize the changes in their bodies and to work with those changes to find solutions so that life could continue. Lena described how she found a creative way to comb her hair once she could not lift her arms to her head anymore. 175 Let's see if there's something we can do about it. So, if I'm not going to be able to lift up my arm or a leg like I used to, well, let's find an easier way to do it. Let's try anyway. Like myself now, it's hard for me to comb my hair the way I used to. Well, because my up-reach it's harder for me so what . . . I looked at my dresser. I have a big jewelry box there on my dresser and it's about oh, so high. I would say about one foot, two feet high. So I put it there. I raised my arm and put my elbow on top of the jewelry box. That raised up the arm to the level of my hair so now I'm able to comb my hair but all I have to do is put my arm a little bit higher. Look for solutions. It was typical for the women to say things such as, "Don't tell me I can't, I may not be able to but that doesn't mean I can't." In other words, the women realized their bodies had limitations that could not be pushed anymore, but they could still find ways to do what needed to be done. Preserving the Body In order to survive, they could no longer push their bodies. The women did not see physical improvement possible in the way it was possible in their youth; therefore, their efforts to care for their bodies were described as preservation. The women engaged in strategies to preserve themselves by being organized and by conserving their energy. Pauline had put a baby picture of herself in her room as a reminder that she needed to care for herself and that she deserved that care. When asked to explain she said this. That's probably the biggest way is being kinder to myself, more forgiving of myself. I said to a number of people would you say those things to your best friend? Well, of course not. Never. Unthinkable. Then why in the world would you say those things to yourself? You need to learn how to treat yourself at least as well if not better than you would a friend. We expect to take care of infants and small children. But we're not sweet little babies anymore and we're expected to look out for our self. Unless you're declared mentally incompetent by a court of law, adults are expected to take care of themselves. Even if you're married, you really can't expect 176 the other person to take care of you. You hope that that person will be supportive and encouraging and will give you hugs when you need them and so on but it's not a given. It's much more mentally healthy for me if, and therefore, I feel better physically as well as mentally, if I don't do the negative self talk. If I am kinder to my body by not demanding that I continue to do things that I used to do. That I can still be an independent person and not take care of everything, every time for everybody. The women described the need to prevent further decline; they wanted to preserve as much of their physical abilities as they could. The women described during young and middle adulthood how they had pushed themselves to decline; therefore, during later adulthood they were describing the need to preserve their bodies to prevent further decline. It was the opposite of what they had done before. Jackie said she had to preserve her body because pushing it would only result in further decline. Yeah, it hurts too much when you don't. I mean you just... and every time you don't, you lose all those nerves and all that stuff. It doesn't rebuild and get you back. You just go downhill further because you never come back. You never get to that point where you're really rested and they say on the literature that your nerves just don't come back. If you over do it, you've overdone it. The key to preserving their bodies was in being organized and by conserving their energy. Being organized was important because energy could be preserved if things were put in order. In other words, the women could easily find things if they knew where they were. Looking for things took energy. Moreover, the environment needed to be organized so that the women could negotiate their way through their homes. Antoinette made this clear when she described walking in her home. She said, "I know exactly how far point A and point B are. I have the 177 furniture arranged just so I can reach out and hold onto things as I walk." Kathy described how she organized her kitchen to preserve her energy. For myself, that is a big deal. If you don't have to walk 6 feet to do things, only 2. You know, what's the problem? So, you can ask my husband about that. (Laugh) cause when we moved into this unit, the kitchen and bath cause they were so small. And when I did my kitchen I wanted my work space to be over there in the corner back there. So the refrigerator, the sink and the stove is all over there in the corner. And the refrigerator needs to be over there all over across to the sink. You know the clean area is over there in that corner. And I think it looks better. So that is one of my many talents. Organizing space. Preserving their bodies also meant that lifestyle choices were made that enabled them to conserve energy. The women conserved their energy by planning activities. It did not mean they could not do anything. It meant that they had to choose what they wanted to do and plan that activity so that it did not cause harm to their bodies. Kathy described this when she said, "It may take more thought or planning or energy to do something. But if I really want to do something I'll figure out a plan and do it." Antoinette described this strategy when she said, "I think I plan more than I used to. Surprises are not fun. I have to pace myself so generally speaking, if I'm going to some place that I've never been before, I will try to get their earlier." Conserving to preserve the body meant resting when needed. The women described how they needed to respond to their bodies before they became tired. This would allow them to continue without feeling pain and fatigue. If they waited too long they would be debilitated for several hours to several days. Lena was a firm believer in pacing herself with intermittent periods of rest. 178 Listen to your body. If your body tells you you're legs are tired, you're ready to take a rest. Well, rest. What's wrong with stopping for a minute? Then you can continue on to whatever you were doing. That's our motto. Listen to your body. That will help you. That will help you conserve what you have until the end. There were times when some women would push themselves despite knowing that it might cause them physical harm. Charlotte's daughter had the flu and she was asked to travel to her home to care for her. She said she knew it would be hard on her but she did it because she could not say no to her daughter when she was in need. Then on a very few occasions, but on some occasions, I can just do several things in one day, a couple of days in a row. But it's never because I choose to. Like last week, last Friday I came in from Austin. I had gone that Monday because my little girl, my 25-year-old had the flu. She had 102 fever and she had . . . they had taken to the emergency room and given her an IV to get fluids in. My daughter, my other daughter had taken her home. But my other daughter had to work the next day. She had to and so there was no one to take Katy to the doctor and go get her 7-Up and get her stuff she needed. So I drove to Austin. I just went in and got a couple of cans of soup and some Sprite and that's all I got to take with me so that when I got there, you know I could feed her and stuff, which I did. Then later that afternoon, I took her to her doctor. I drove in traffic. When we got back from the doctor, I was extremely tired. She laid down and I laid . . . I don't remember but I know I woke up in the big chair and I had been asleep for a couple of hours. Well, I had forced myself, forced my adrenaline, forced myself to do that because that was my baby and I needed to take care of her. The next day, I rested a lot that day. The next day I really rested all day and then on Friday, I drove home. I came on home and went to bed. So then for several days after that, I cried a lot. I was very depressed and very exhausted. I knew I had overdone it but I was willing to do it for her. I'm always careful not to do that frivolously. Darlene described a similar situation when she went to care for her daughter after a surgery. The women felt that caring for their children in need was a worthy 179 sacrifice; they did not push themselves when they did not feel the sacrifice was worthy. Conflicts between Self and Body Over time, the women saw how their bodies were changing as they rested more. For many, the changes were hard to accept and they debated their decisions to preserve their bodies with rest. What they saw in the mirror conflicted with what they wanted for themselves. Charlotte said, But it's hard if you're busy all the time and you feel good as you're getting older and you stay busy. You have a lot of friends and a lot of support things. You don't spend all that much time on accidentally leaning down over a mirror where you can see everything falling forward. You know the force of gravity and you look like you're 80. ...sometimes when you're tired, you notice wrinkles or you notice or I notice things that I wouldn't have given a second thought to before because I would have been too busy to even be seeing them. Moreover, not everyone was preserving themselves; some women said their bodies were continuing to decline. For instance, weight gain was a problem and the women struggled with how they would prefer their bodies to appear and what their bodies could do. The weight gain did not look good and it made using the body even more difficult. They reminded themselves that there were consequences to pushing themselves. Judy described her struggle with weight gain after trying to rest more. Just ... It doesn't work anymore. It doesn't do what I want it to do. With the loss of mobility comes this gaining of weight. Probably and I think some of the pills they give you make you gain weight. Especially this last year, I probably gained in the past year and half...I have probably gained 30 pounds. And so it seems that you know that I am carrying more weight around that I am not used to carrying that makes it harder to do anything. That is one reason it wears me out, but it doesn't matter if I eat or don't 180 eat. I just don't lose weight. And people always tell you well you need to exercise. Well, if you exercise this you are going to hurt that. So you have to be it is easier not to exercise to not have another ache and pain where you have been damaged trying to do something. The women also found more time to notice the changes that had occurred with age. For Judy there was a moment when she looked in the mirror that she realized that she had aged. It was during later adulthood that she was given the time to notice how her face had changed. She had not just changed with polio, she had changed with life. My eyes are getting to where to put my make up on I need a make up mirror. To be able to do my eyes and everything because I just can't quite see anymore. And they had these; they had these light-up mirrors that you turn on. And you could... these things were magnified so much that you could see every single flaw on your face. And I just, my gosh, is this, do I really look that bad? I know I have got the dark circles under the eyes. That is probably a hereditary thing. I went, my gosh. I didn't know my skin looked that bad. The conflict between the self and the body continued when the women felt sudden surges of energy. These energy surges could be deceiving because the women could feel the energy in their minds but it would not last long if they tried to respond to it with their bodies. Moreover, if they responded to the energy surges by doing more than usual they would hurt more than usual. Donna said that she felt energy but if she tried to do too much the energy left her. She said, "It's just like a car that runs at a speed and then it just puts the brakes on and that's what I'm like. The brakes are on. I put them on. My body, whether it's mentally or physically, has put them on and I can't go." She said that if she tried to push herself there were consequences such as she described below. 181 I had a real hyper day like well, let's get this done. Let's get that done. And then the next day, my muscles in my body I was controlling them because I looked in the mirror but it felt like I couldn't control them Have you seen people . . . I known you've seen them but they have a leg kind of throws out when they walk? That's what I felt like I was doing but I wasn't. I tried to go for a short walk to calm the muscles down or whatever I was trying to do to them. I had to turn around and come back. Charlotte described the energy as a deceptive drug. It's a high. I've never done drugs or anything that give you a high. I just think that's what a high would feel like. It's almost surreal you know. It's so neat. It's not like being polar where you're having a manic high. It's like everything is just so good and happy and you feel so good. There's almost nothing anybody can tell you that would upset you. You think. Not true, but you think that. You just think of all these things you want to do in that day. You see when you're driving down the street, I see places that I think oh man, I'd love to stop in there and just look. But I never ever do that because I don't have the energy to walk and do that. But when I'm feeling like I have energy and everything I'm just thinking oh, I want to stop there and there and there and there and just see what's in there. The women lived with the conflict about the best way to care for themselves. The women wanted to age as well as they could. They attempted to preserve the function they had at the time and they knew their bodies declined despite their attempts. They believed, however, that their bodies were declining at a slower rate then they would if they had continued to push themselves. In response to this conflict, three participants attempted to exercise in controlled ways believed not to cause pain or fatigue. Another participant started a high protein diet. Others were reluctant to try other ways of caring for their bodies. After all, they found few health care providers who knew of polio so they found few whose advice they would take. Polio was part of who they were even if health care providers did not acknowledge that part. 182 There was, however, a conflict for the women in regard to how much they would let polio represent their experiences. For instance, Cindy believed that all of the physical changes she experienced over the years were due to the effects of polio. During Cindy's first interview she explained that most of her current physical problems were polio related, caused from pushing herself to much. Her second interview was done in the hospital after she was found to have an infected ulcer. She said she no longer believed that all of her health problems were related to polio, although some were. She wished she had seen a physician sooner instead of waiting to see a polio expert. Regretfully, she died a month later. Relating with the Interdependent Self As the women aged they realized a need for interdependence, which was an acknowledgement that no one does everything by themselves. It was the ability to give and receive within their relationships while valuing both acts. The levels of interdependence varied depending upon the needs of the women. For instance, Cindy had a high level of interdependence as she needed someone to be available at all times. She was unable to transfer on and off her toilet without assistance. The following field note was written the day of her first interview and it highlights how she needed help and amiably accepted it. When I knocked on the door she said, Tracie, come on in. So she's obviously expecting me. But she tells me to come in and have a seat, that's she's on the pot. I come in and sit down. She said that she needs to wait for her neighbor to come over to help her off. I asked if I could help her and she said, "Well, you're probably not big enough." She said, "Come here and let me look at you." She said, "You're tall enough but you're not big enough." She said, "He's coming anyway." And she had her cell phone. Not cell phone, but cordless phone with her and she had just called 183 him. A larger man comes over, who is her next door neighbor and helps her get off the commode and onto her electric scooter. Jackie was also interdependent but on a lower level. She had a network of friends that she emailed every morning. If they did not receive an email from her they would call her. If she did not answer they would come to the house to check on her. She felt very comfortable with this type of assistance. In response, she did the same thing for them. The women described the need to accept that others could help them and that by letting others help them it did not take away from who they were as women. In fact, letting people help was a means of letting others feel good about themselves. For instance, Antoinette discussed how she came to know that letting others help her was the right thing to do. It's an opportunity for them to know what it's like to help somebody and feel good about it. I even like to help people because there are people that are older than I am and less able to get around than I am. It makes me feel good so surely I'll make somebody who has nothing wrong with them feel good. Pauline also described her experience with coming to realize that others could help her. What can I do for you? Well, if you tell them then you'll get exactly the present that you need. It will be the right size and everything. The first time that I really needed to ask for help, or decided that I would, was one of those fluorescent light bulbs in the kitchen had burned out. There is a step ladder that I can still use because it's got a nice wide tread and I can manage to climb two or three steps on it but it's hard. I just thought well, I'm just going to ask the neighbor who lived catty-cornered across the street if he would come over and change the bulb for me. He had volunteered if I ever needed anything to just let him know. So I asked him if he would be willing and able to do that and he said yes. He's about 6''3". He stood there on the floor, reached up, moved the little Plexiglas thing over and he changed the bulb in about 2 minutes. I thanked him. He said 184 no big deal. No big deal to you, real big deal to me. He was glad to give me that present. All I had to do was be a cheerful recipient. I just decided after that, there was no reason for me to spend that much energy and effort and feel bad for the next two or three days just because I maintained my independence and changed my light bulb when he could come over and do it in 2 minutes with very little effort and glad to do it. Despite knowing that others might benefit from giving to them, some women found it difficult to accept help. After all, they were raised to do for themselves. For example, Joann felt it difficult to ask for help from people. She said, "But now I'm working on it. It's something that you really do have to work on yourself to ask people to help you. They would just be glad to. It's no problem for them but it's a biggie for me." Women also found it difficult to accept help when they knew that the people they asked also needed help. The women had once been the primary caregivers for their families and wanted to keep that role. For instance, Dorothy's husband, who was suffering from several chronic illnesses, would do the majority of household chores. She felt he was doing her job at a time when he needed rest. Yes, and right now it's extremely hard. I'm going to tear up again. He's in the early stages of Parkinson's. Here lately his blood pressure has gone up. I feel bad because he's having to do the things that I should be doing and he tells me, "No, don't feel bad about it. You did it all these years. I quit work. I retired. You didn't quit." He retired from work to take care of me but I still feel guilty seeing him. He's having a lot of arthritis setting up in his back. He's just 66. He's got diabetes and I just feel real guilty that he's doing my job but he doesn't want me to feel that way. Well, because I know he's hurting and in pain, too. I guess because that's the way I've done with my family. My husband and kids are my life. I've done everything for them and I think I still ought to be. He keeps telling me, "No, that's not the way it is. It's my turn now." When I see him stretching his back or rubbing Ben-Gay or something on them, I thought his back wouldn't be hurting if I was doing that job. But he says, "Well, yours 185 would be hurting worse." So, he doesn't mind and I'm glad of that, but I still feel guilty. I just can't get over not feeling guilty. I want to do it. Others women, such as Sarah, could not ask for help and were annoyed when their family members did not help without being asked. They felt their family members should know that they need help and do it. At the very least, they should quit asking them for help. The women felt their family members should know to pick up after themselves and that they were not able anymore. Frustration mounted when this did not occur, highlighting the importance of communicating their needs to others. Two of the women were very frail due to the effects of polio and osteoporosis; therefore, they required careful assistance when they received help with things like moving. The women had to negotiate their need for assistance with their need for careful assistance. Their bones were fragile due to years of immobility. They knew that falls and twists could result in injuries that took months to heal. Elizabeth described how she was guarded when others helped her. I'm cautious. I don't know how to say this. There are times when people are lifting me or putting me up on the lift. You know well, wait until I tell you I'm ready to move it because once upon a time, I wasn't very high off the ground but yes, the lift went up before I was ready and I did dump out on my face. Lena had been injured due to an accident that occurred when a public transportation employee assisted her into a seat. The employee grabbed her legs to push her back in the seat, which resulted in a broken leg. She said, "They pushed down below my knee and we all heard the pop. It was the tibia and the knee, too." It took several months for the leg to heal. She required surgery and a cast. 186 The women also acknowledged a conflict between people who did not have a disability and those who did have a disability. The women knew that people without disabilities were unaware of what actions would be seen as offensive and what actions would be seen as helpful to people with disabilities. Kathy described this situation in detail. I see a few cases, what's happened to disabled people, sometimes when people offer assistance the individual that needs the assistance either doesn't want it, or thinks he can do it himself and there's one or two incidents, where the disabled person will just scream or yell at, or just, "Leave me alone," kind of thing, as opposed to being gracious and accepting the offer, or explaining graciously you know, "That's fine I'm ok." Because the public is trying to help, and they don't think they need the help, or want the help. Or they're just angry period with their position. I've seen that happen in a few cases. And people just jump back, "Sorry." And again it's too much attention maybe being given to the disabled, but coming with good intentions from the person who's giving it, because when they're being scorned or yelled at or not grateful of the person, then they'll come back and they'll sue...I don't know. It just seems to be not a complete understanding on both parts. But I've witnessed a few, which it's too bad, because this guy he goes up to this lady to be nice, to be assistant, and they don't want it, "I can do it myself." Without fail, the women said that the way to handle this situation was to ask if the other person wanted help and not to take it personally if they did not. When asked how she wanted people to treat her, Darlene said, "The first thing off the top of my head is like a normal human being." Antoinette added her opinion on people who might want to help her, "They don't want to offend me and it shouldn't be. Being nice should not be a secret. You know. If you look at me and empathize that should make you feel good because that's softness in you." They also mentioned that as they aged they wanted more help but that had its limits. In other words, they wanted help but only the help that their bodies 187 needed because they wanted to remain as self-reliant as possible. As Joann said, "But I guess the real fear is that some day I'll probably be totally dependent on other people. I think that's the real fear." For these women, every activity they gave up could put them closer to complete dependence. SUMMARY These women knew that impairment had a personal meaning to them and a meaning to society. The meaning changed with age and affected their lives in ways that restricted their ability to act out and be accepted in the roles they chose for themselves as women. In their youth their impairment meant they had to try harder. They pushed to prove themselves independent. As they aged it meant they needed to value and to conserve the function they had. They had unease about their response and societies' response to their increasing impairment with age. After looking back on her life Antoinette said, "Lucky. You know how lucky to not see all this other stuff because it is a burden. I can tell you that. It's a burden. You know sometimes, I just really, like gosh, can I just have a limp period and that's all? Can I just, please, just have a limp?" She knew that polio was much more apart of her than having a limp. In summary, the women's perceptions of their environment in childhood through later adulthood evolved from a time and place where people did for themselves to a time and place where obstacles to independence were improved for those with disabilities but remained a problem for those who have aged and no longer have the energy to overcome less obvious barriers. Their sense of human agency had evolved from a childhood where few had the ability or knowledge to 188 overcome impairment to later adulthood where new strategies had to be developed to incorporate the needs of their bodies and sensations with the needs of their selves. The self or body could not exist without caring for the other despite their desires to continue previous ways of life that were based on pushing the body to meet the demands of the self. Finally, their relationships evolved from childhood where they were pushed and encouraged to be independent to later adulthood where they learned to become interdependent to maintain their ways of life. 189 Chapter 5: Aging, Impairment, and Gender Chapter 5 contains the findings of the three exploratory questions: the exploration of the meaning the women associated with aging, the exploration of how the women adjusted to the changes they associated with aging, and the exploration of how the women's gender impacted their experiences and adjustment to aging. THE MEANING OF AGING Few planned their lives to be the way they turned out, and in the end, they played the cards they were dealt. This was the over all meaning of what it was to age with a disability. It was more complex and more interesting as their lives were detailed, but this was the overall gist of how the women viewed aging. No one planned to get polio. No one planned to have a disability or grow old with increasing impairment, but they did. Their ingenuity was seen in how skillfully and fully the women lived their lives with the effects of polio from childhood to the present. In other words, how they played the cards. The specifics on how skillfully they lived their lives over time were captured when they were asked to reflect upon their life course and relate what aging meant. The women discussed how aging and polio could not be separated as embodied experiences; they were changed by both in appearance and ability. Their bodies had changed in real and abstract ways, which left them to feel out of synchrony with the life they had expected or the life they had seen for others aging without impairments. As they aged with polio, their bodies changed in 190 unique and often unpredictable ways, which made aging seem relative to the woman's perception of self and body in time and space. Ultimately, they saw aging as a journey that changed them in form, perception, and ability. Moreover, aging meant their bodies were slowing down, but they maintained, as they had always done, that the measure of their success was in their mental response to their declining physical abilities. The following was a report of the themes and sub-themes that emerged out of the discussions surrounding the meaning of aging for women with childhood onset polio. There were four major themes: Aging and polio: It's Just Part of me, a Slowing Down, the Particulars of Aging, and the Journey that Changes You. Two of the themes, Aging and Polio and the Particulars of Aging were composed of two and three sub-themes, respectively. Aging and Polio: It's Just Part of Me The usual changes of aging and the affects of polio were difficult to separate in the context of which experiences affected the women the most or in what way over time. Darlene said that polio could not be separated from who she was. She said, "I've lived with it all my life. It's just part of me." Antoinette called polio a tree root that broke into every aspect of her life's foundation. Kathy said, "And it reminds of, you read that book, James the Giant Peach, I believe it is, or see the film? It's the little boy in a peach and he's getting around. He does all these travels and wonderful things and all that. It's kind of like that sometimes, a fashion of either a nightmare or a fantasy kind of thing that took off." As the women reflected upon the meaning of aging, they described how polio was part of 191 their lives and how it affected their embodied experiences. The experience of aging and polio were described using two sub-themes: Impacting the Body's Appearance and Ability and Disrupting Chronological Meaning. Impacting the Body's Appearance and Ability The women spoke of differences in their bodies over time. They described how the body had changed in appearance and ability from when they were younger and they described how their body might have been when compared to family members. The women spoke frequently of how their bodies had changed over time, both due to polio and due to age. Muscles that were affected with polio would often shrink in size, and decrease in strength. Cindy pointed out that her right hand was smaller than the left because the muscles were atrophying. Alita lifted her pants leg to show her calf. She said it was much smaller than it was 2 years prior. Donna said, "My body changing is a slap in the face because I've always been petite and still am in the height but not around. And the lack of things bothers me. Like I squat down to do something and I've got to pull myself. Well, that's crazy." Charlotte noticed multiple changes in her body. My body is a big blob of fat, no muscle tone. My legs are all misshapen. Now, the bones have changed shape and they're knock-kneed, gnarled, and weird. The muscles are atrophied. I have nice eyes but my eyes don't look nice anymore because of fatigue, strain. But on mornings when I wake up and I'm rested, I have very beautiful eyes, but the fatigue will eventually make them bags under my eyes and they just look... the eyelids kind of drop and they're not pretty anymore. My hair healthy but thin. I can't do anything with it because it is thinning there and I don't know what to do about that. 192 Other women saw specific physical differences between themselves and how they thought they would have appeared without polio. The most frequently reported difference was in height. Polio had affected the height of several women because the virus damaged their leg growth or caused severe scoliosis. Patsy said that she was 7 inches shorter than she should be because of her scoliosis. Tabby also discussed how polio made her shorter. She said, "I used to be 5''1" when I was in high school. The last time I was measured, which I think was when I was 4''11". I would probably be at least four inches taller. I would probably be 5''4" had I not had the polio and the scoliosis." It was clear that appearance was important to the women and that aging had threatened how the women viewed their appearance. Some were upset with the change and some were not obviously concerned. Others were more accepting of the changes despite wishing they had not occurred. When asked if her appearance was important, Dorothy replied, "Yes, it is. It's important to me but not as much, I guess, as it used to be. Like I say, used to I wouldn't let anybody see me without makeup and everybody sees me without make up now, but I still wish I could put on make up every day." Some women saw their changes in appearance as a negative aspect of aging. Alita brought out many of the negative aspects of aging and aging with polio in the text below. I don't like some of the things. I don't like menopause at all because the dryness. My skin is changing. Although a lot of people tell me I don't look 60, I don't like the changes. I don't like the whole menopause bit. Vaginal dryness. Dryness in general. My eyes, I don't produce tears. My eyes dry up. My skin is . . . these little . . . has these brown areas on it you know the changes in pigmentation. Just not being able to do some of the things that 193 you used to do. Not being able to wear pretty clothes even a shoe with a heel. I guess that has to do with the polio but I think I know a lot of friends who don't have polio that can't wear their heels anymore, so just a lot of things. I'm a fun person. I love music. I love to dance. I love to do all those things and I can't do them anymore. I can't drive at night anymore because I can't see very well. I have got a cataract or two up there in my eye that interferes with my night driving. I see halos. I guess I think about it in a negative way. I don't know of anybody. I think they're lying; people are lying if they say they like getting old because I don't. Donna made a similar statement when she said, "I'm fuller. I have lines. You know how women get these jowl-looking things? I see that." Beatrice noticed these changes, too and she did not like them. She said, "It stinks. I mean, you know what? What's good about aging? You get wrinkles. Who wants them? Your hair turns grey. Who wants that? I do everything to camouflage it that I can." Not everyone saw the changes in their appearance and abilities in a negative manner. Some of the women were pragmatic about the changes while others made jokes. Martha said, "I used to keep my hair colored and I don't anymore. I'm glad it's that silver stuff and not that old yellowy stuff. Thank goodness I have natural curly hair so I don't have to worry with a blow dryer or curling iron or any of that because I couldn't do it." Janette was content with the changes she saw in the mirror, but she joked about her husband's reaction. She said, "My husband said one day, `you know, you need to tint your hair. Its part gray and part black. You ought to have it one color. You need to decide which color you want.' Well, you dirty old man. You want too much." The women did not know how they would have aged without polio. Martha only knew her own experience and could not relate that to any other experience. When asked how it felt to age with polio she said, "I don't have a 194 clue. I don't know how I would feel if I was somebody else. I have no idea. It's just me." The only way the women knew to compare their experience to what it might have been without polio was to compare it to other women in their families. By relating their bodies to the bodies of their family members, the women could see a disruption from their genetic potential. For instance, several women reported that their mothers were able to do more than they were able to do. Betty compared herself to her mother. Well her mother lived to be 98. And I keep thinking, "Oh gosh if we can live to be that old." And I want to, and it is distressing to know that she can get around and she can bend over and pick up things off the floor where I can't do that anymore. I can't get things out of the vegetable drawer down there, because it's so low. I can't get the oranges out. I have to really get in a different position to try to get down there. But her mother was that way. When Grandma was in her 90s she could stand with one foot on the floor and the other foot in the sink if she wanted to wash her foot off. So she is real limber, so that is something that she can do. And Karen, Karen (sister) is that way even though she's had cancer. Martha also saw that she was different than other women in her family. She said, "I'm never going to do what my ancestors have done because they were very busy, active physical people for all of their lives. And they lived to ripe old ages." Disrupting Chronological Meaning The women talked of discord between their views of themselves as women, their appearance, their physical ability, and their chronological age. Their experience of being 60 years of age was not what they perceived as the normal experience of a 60 year old woman. They did not feel that the aforementioned aspects of themselves were in agreement. Jackie said, "I was thinking I was getting older. But I wasn't that old to really go through all these changes that no 195 one knew what. Well, we'll put you on this. We'll put you on that. It didn't work." Donna commented on how her age and financial planning did not correlate with what she was expecting. She said, "...even though I was putting money aside, that was for when I got old, not today. That was my thoughts, you know." Antoinette spoke of being likened to the age of an older distinguished dentist, which caused her to be bemused. She said she was, "Feeling very conflicted because I didn't think of myself as being old. I felt like I was retiring young. But now apparently, I look like everybody else. An adjustment, isn't that strange?" This was also evident when Charlotte spoke of how she viewed her aging body. That's hard to take. In your heart, you know it's not what makes a person. It's not what's important, but for me, it's not so much what other people think as it is I feel like I'm in a strange body. It's like sometimes I don't recognize me. It's like I don't go out in a crowd and think, "Oh, I'm so embarrassed by the way I look." I don't think that at all. Because most of the time I look better than most of them a lot of times. But I just don't feel right in my own skin because my body has changed so dramatically in a year and a half that I have to get used to me. It's a change. For many of the women the discord the felt led them to believe they were different than those who had aged without impairment. The women said they felt different than other people because they had experienced at earlier ages what others might never experience. They were developmentally changed from their experiences with polio. They knew about the hardships of life earlier than other people knew of them. They said they were less na ve, emotionally and mentally stronger than people who did not have the experiences they had with impairments. Elizabeth said she was prepared for the issues associated with aging, such as gaining benefits, caring for her body, and overcoming aging stereotypes because she had been doing it most of her life. She 196 said, "So many of them they get, as they become seniors, they become disabled. Then a lot of them, that's late in life for them to start thinking about, oh, gee, what should I do about this or that? Where we've been looking at it, thinking about it, and doing it for a lot more years." Lena had a similar view when she said, "Well, I've been learning to deal with loss most of my life, more so than most. I kind of got a head start on that one. I lost a lot a long time ago." Slowing Down Many of the women said that aging was slowing down. By slowing down, the women meant they could not do as much as they could when they were younger or they could not do things as quickly as they once could. When asked what aging meant, Jackie said, "Slowing down. The things that I used to be able to do, like I can't kneel that much or get up when I kneel. That kind of aging." When asked what aging meant, Darlene said, "less active, less energy. But other than that, it doesn't bother me that I'm getting older." Kathy also hinted at this when she said, "Aging is the slowing, the slowing of your abilities to function as you do when you remember." Slowing down was also a cognitive response to changes in their bodies. For instance, slowing down to compensate for being off balance was very common. Antoinette was able to go faster when she did activities in her youth but she had to slow down as she aged to compensate for being off balance. So it's an adjustment for me. I used to be very, within my disability, I was very agile. I could do a whole bunch of stuff like you know I could go down the hall and as I went down the hall, I could turn real quickly and go some place else. Or you know just you know flick a light switch off or on or whatever and make it around the corner. I knew exactly when to lean on 197 a door jam and pivot myself so that I really wasn't working that hard. I was using physics to my benefit you know. You can see in my house, the places where I put my hand. You can tell. The paint is sort of worn right there. I would reach out my hand, touch the door jam at a certain place, and just pivot my weight around rather than making a complete turn. I just use physics and I would be turning the other direction. Now, I find myself having to really concentrate because if I don't, I miss the door jam, which is not good, which is not good. Slowing down did not mean becoming disabled or becoming ill. The women did not equate aging with disease or disability. Illness had occurred at younger ages, and disability had occurred on various levels throughout their life. Aging was part of a decreasing response rate from the self in response to the body and subsequently, to the demands of living. Antoinette described how everyone slowed as they aged, including her. She perceived herself perpetually slower than those without disabilities. I remember as a teenager thinking okay now when I get old, maybe I didn't think about when I get old. I thought about when they get old then they'll walk as slow as I do. Maybe they won't be that interested in doing things that are athletic and we can finally be on a par. And gosh, didn't that surprise me when I not only had them get old, but I got old, too. I'm still behind the curve and they still have to wait for me. That was a bummer. The women perceived a slowing of the body and the self frequently had to slow down in order to compensate for changes in their bodies. Their response to the slowing of the body did not mean they were old or without purpose. Aging may have meant slowing down but it did not mean being old. Old was something for other people, none of the women identified themselves as old. Moreover, as the women journeyed through life, they received, if not embraced, new roles. With the new roles came different responsibilities and different challenges. The 198 women's ability to accept new or changing responsibility in concert with the slowing down was a measure of their wisdom and maturity, an indicator to them they had aged well. For instance, Kathy described this in great detail. I have always thought in a mature fashion but I am not sure that is the thinking of a 65 year old or 50 year old or something like that. To me age has nothing to do with it. It is just being responsible, respected, for mother, grandmother or that type of thing. That type of individual because with each of these events in your life something comes a long with it. Another responsibility and if you accept that responsibility then to me that is a mature attitude. Rosaria affirmed this when she said, "I guess you adjust as you go along. I have adjusted a little bit at a time. I know I get in and out of the car differently than I used to. I get in and out of the house differently..." Alita said, "I just hope that I can accept things... That I'll be able to age gracefully and die when my time comes." Janette added, "Sort of on the surface, just getting older, marching into the next year and the next year. Aging, I think, is gaining wisdom." It was common for the women to say things such as, "aging to me is not the number. It's how you feel inside. It's what you make your life. How you make life your life, I think, is important." The Particulars of Aging The women's experiences of decline in middle and later adulthood brought on discussions of advancing age. When they found themselves unable to will their bodies to action, many pondered, "Is this aging? Am I getting old?" Healthcare providers, inexperienced in the care of polio survivors, often told them, "Yes, you are getting old. What did you expect? We all age." Other healthcare providers, knowledgeable in the care of polio survivors, told them, 199 "Yes, as a matter of fact, you are aging faster than people your own age without polio. We estimate your body to be at least 20 years older than your chronological age." The women pondered and discussed these issues about their aging bodies, which resulted in three sub-themes: The Individual Aging Body with Polio, The Unpredictable Aging Body, and The Relativity of Aging. The Individual Aging Body with Polio Many of the women noted an inconsistency in the statement from health care providers who said that their bodies were years older than their chronological age. The women knew that at 55 years of age, their theory would have put their adjusted age at about 75. The women were not isolated. They knew how the bodies of many 75 year old women appeared; they knew what many of the 75 year old bodies could do. Their bodies were not consistently similar in either way. Some 75 year old women appeared very old to them while others appeared young. Some 75 year old women ran in the Senior Olympics while others were long deceased. This led many of the women to denounce that comparison in favor of the individuality of aging. The individuality of aging was prominent in the interviews with multiple women. For example, Martha had sat down with her pictures from childhood through young adulthood. She discussed each one. She also told of how her friends and relatives, pictured along with her, had aged in different ways than she had aged. She believed that aging was different for different people. She said, "Well, I was talking to my mother one day on the phone. She was bemoaning the fact that she could not do at 60 what her mother had done at 60. I just sat there 200 going okay mom. Well, I wish I could do at 40 what my mother did at 40." The field notes written for that discussion highlight the impact of that interview. First, I could see from looking at the pictures this really healthy, beaming, beautiful child. And then a sad adolescent-type, prepubescent girl with this Milwaukee brace just staring off into the distance. Then I could see this really, really attractive younger woman. It reminded me somewhat of Nicole Kidman with the reddish kind of hair and then dark sunglasses, 50's-type style. The tight pants, skinny body frame and then getting married. Kind of an intelligent, eager, awkward young woman. Then I'm looking at her and she's just now is very obesely frail. I don't know if that makes sense. A woman who is relatively young but fading so, so quickly and yet so mentally alert and having so much potential. So with this lady, aging just is. It's not any particular state at any one time. It's not any one particular experience at any one time. It just is. It's just what you do. Aging was an individual journey, which was different than what other people did or what other people would do and the difference remained within them for a life time. The Unpredictability of the Aging Body The women's thoughts about the aging process and their aging with the effects of polio led many to believe it was unpredictable. Aging was unpredictable; who could have predicted how their bodies would age? Kathy said, "Nobody knows what it's going to be." Donna confirmed this when she said she did not believe that anyone could have known how her body would change over the years. Charlotte described the unpredictability of aging with polio in the passage below. I think this disease is insidious in that when you get cancer you pretty well know what to expect. When you have heart disease you pretty well know what to expect. But when you had polio when you were young, you went through hell for a good long time but then you got okay. Or what you perceived as okay and normal for a very long time. You kind of had your 201 life planned out in your mind when all of a sudden. Boom. The same disease knocks you down again. I know people can have recurrences of cancer and the same thing happened but you expect that. But nobody expected this. It's just such a shock to know that it can be that debilitating. The Relativity of Aging The aging process could only be known by the one who experienced the process and that process was interpreted based on the person's experiences with their body in space and time. As the women aged, the meaning of changes in their bodies was relative to the degree of change they experienced. The degree of change was emphasized, or accentuated enough for conscious thought, when the women were with certain people, at certain places, or doing certain things. In other words, certain moments brought out the sense that the body had changed from what it once was. When Darlene saw that her peers had changed with age, she realized she had aged, too. She said, "Probably not until I turned 60 and it was just like wow. Where did the years go? I seen my friends and they're gray-headed. I'll look in the mirror and go oops." Dorothy talked about how her perception of aging changed as she changed; the meaning of aging was relative to her own age. She said, "Well, used to it meant by the time you hit 40, you were ready for the rest home. But now that I'm 62, I don't feel that old. Aging doesn't mean old, old to me anymore, but I do feel that aging now means getting to do less and less of the things that I used to do all the time." The Journey that Changes You Aging was an embodied journey from birth to the present, and throughout the journey different levels of self understanding and ability were reached. Their 202 understanding of aging was based upon their bodily experiences within the world. The women had the capacity to objectify and store their experiences, bring these to the present and use them to influence their future; with this knowledge they grew older. As Sarah commented, "You see more and more I guess of it. Maybe that's what makes the difference, rather than that just being your first time to experience it." Or As Pauline said, "I have handled lots of situations and I'm still here." Lena emphasized this point time and again. I think just by everything that you go through. Life experiences that you go through. That's one remark that I've been making to you over and over again that you try and learn from the experiences that you go through and something else comes up that's different but it makes you stronger and then you become not so naive. You learn to ask questions to yourself, analyze yourself. Ask questions to the doctors and to the nurses and you learn as you go. Every day we're a little bit older and I think just life in itself. And that's what I keep telling you. The journey was evident in how the women's perspectives had changed over time and in how the women adapted to the changes associated with aging. The women saw the effects of aging in how their perspectives had changed over time. Their journeys had changed how they viewed their bodies, their selves, and their world. Their views had shifted on issues such as racism and disability. Their perception of how wise they were had grown. Their perceptions of how big buildings were had diminished. Their spirituality was stronger. For example, Janette said, "I know I have grown. I have grown spiritually. I still have that human side. Sometimes I cry or get pessimistic or worry about things. But it isn't like it was before, I am able to pick up the pieces and go on." Joann confirmed this view. She said, "As a child, you just kind of sit back and wait, you know, for people to do things for you and make you better. As an adult, I know 203 now that you're the one that can make it better for yourself. It starts with you and how you approach it. How you deal with it." Lena said, "So now at this stage of the game, as old as I am now or more, I think first." The change in perspective was also noted when Cindy mentioned in the hospital before she died that disability had changed from when she was a child. She had much more to live for as an older adult. Summary The meaning of aging could not be separated from the meaning of aging with polio. The women saw changes in their bodies that were the result of both polio and aging. Given the combined affects of aging and polio, the women knew they were aging in a manner that was out of synchrony with those who did not have impairments. The women could see and feel changes that were not reported by friends or relatives, which added to the unique experience they perceived. Aging meant that had slowed down but the women measured their achievement in aging in their mental ability to overcome their physical challenges. They saw aging as a journey that had changed them in form, perception, and ability. The themes that represented this journey were: Aging and Polio: It's Just Part of Me, Slowing Down, the Particulars of Aging, and the Journey that Changes You. ADJUSTMENT TO THE CHANGES ASSOCIATED WITH AGING Many of the women spent time contemplating the best ways to adapt to the changes experienced with aging. The following section was designed to describe the changes, the consequences of the changes, and the strategies used to overcome the changes. 204 The women described primary changes that they recognized over the years and that required them to adapt to the change in themselves. These changes were physical problems and required that the women recognize and respond to them. They were problems such as physical and mental fatigue, pain, changes in balance, and increasing limits to dexterity. The women described consequences to the physical changes. These were physical, psychological, and social results of the primary physical changes. They were consequences such as falling, making mental mistakes at work, having anxiety attacks, or not being able to multi-task anymore. Due to the consequences of the physical changes the women had to plan strategies to address either the problems directly or to address the consequence of the problem. These were strategies such as changing an activity, resting more, retiring from work, or using assistive devices. Examples of the changes, consequences, and strategies were listed in Table 12. Many of the women mentioned that they also experienced secondary changes due to the strategies used to compensate for the initial changes. These were changes such as obesity and isolation. The consequences of these problems could compound the problems related to the consequences of the initial problems, which led to further strategies to compensate for the problems. Examples of further problems, consequences, and strategies with aging were presented in Table 13. The ability to find strategies to adapt to the changes of aging was based in their ability to find synchrony between their perception of their self and their abilities to act on their own behalf. In other words, the women could adapt to 205 changes based upon four things. First, depending upon what they accepted as a change or a problem with aging. Second, depending upon what they had available to them as an adaptation. Third, depending upon if that adaptation was consistent with the image they wished to present, and fourth, if they were able to use that adaptation in a manner that gave them purpose or enjoyment. Lena said "Aging, like you say, it's learning to take your age as it comes. Yes, things get a little bit harder, especially for us that have polio. We get a little weaker. We're a little bit tired but then you find things to do that you can do at that stage of your life that you still enjoy." 206 Table 12: Changes, consequences, and strategies. Consequences Decreased time on projects Unable to multi-task Mistakes made when on task too long Stopped or altered activities Falls Fear of falls Strategies Rest breaks Planning and organization Frequent breaks Post-pone important decisions Massage, exercise, medications, and assist devices Assistive devices Walking on even & textured flooring Planning and knowing lay out of surroundings Assistive devices for reach Asking for assistance Changing grooming practices Change clothing types Portable assist devices Ask for assistance Pneumonia shot Breathing aids Portable devices, such as toilet seats and ramps Primary Changes Physical Fatigue Mental Fatigue Pain Balance Problems Decreased Dexterity Do fewer complex activities that require full range of motion Decreased Muscular Strength Less lifting Decreased ability to clear lungs with diaphragm Decreased ability to push self in chair or pull self up from toilet Temperature Shifts Decreased desire to go out Layering with multiple clothes Heating pads 207 Table 13: Secondary changes, consequences, and strategies. Secondary Changes Obesity Consequences Strategies Type 2 Diabetes Further decrease in strength Further change in clothing style Ulcers Decreased desire to go out in public Decreased self-esteem Surgeries Exercise Resignation Altered appearance Cut hair short but stylish Dye hair Ask for assistance Fractures Hospitalizations, surgeries, and further mobility impairment Hire assistants Fewer sexual experiences Marital conflict Sexual banter or other means of intimacy Computer contacts via internet Telephone conversation Change medications &/or use alternative therapies Isolation Side Effects from Medications Fewer people to provide assistance when needed Falls, weakness, balance disturbances Emotional and psychological disturbances Crying, anxiety, and nervousness Decrease mental stimuli 208 THE INFLUENCE OF GENDER ON AGING WITH POLIO The meaning of aging with impairment was intertwined with the meaning of being women. The women could not compartmentalize their experiences with aging, gender, or impairment; just as their bodies were perceived and given meaning as impaired so were they perceived and given meaning as women. The meaning of being women aging with impairments was derived out of their embodied experiences as a whole. As Patsy said, "I just love being a woman but I don't have to be frilly, I don't have to be anything that I'm not. I can't be anything else but me." Throughout the study the women related how the meaning of being women was entangled with the meaning of aging and this influenced their ability to adjust to the changes they experienced. The women's gender influenced their ability to adjust to the changes that occurred with aging. Their gender influenced their adjustment by influencing their ability to find synchrony between their perception of self and their abilities to act on their own behalf. From the women's discussions of how their gender influenced their adaptation to aging two themes with sub-themes emerged that were related to each other by the varying tension perceived between them; one theme was never independent of the others. The two themes were: Perceptions of Self and Discrepancies in Womanhood. Perceptions of Self The women spoke of how they perceived themselves as having both feminine and masculine characteristics. These characteristics were perceived as 209 both negative and positive qualities and impacted their ability to care for themselves. The ability to find a balance between the two was important in order to be self-sufficient women. The commonalities were categorized into three subthemes: My Masculine Ways, My Feminine Ways, and The Balanced Self. My Masculine Ways The masculine self was discussed frequently when the women spoke of what kind of people they were raised to be. These characteristics remained with many into adulthood. Masculine characteristics were described as strength, playfulness, and independence; the women thought the characteristics atypical for women. Janice said, "I was always a tom boy growing up. I think also because of my disability, mother and dad always wanted me to be independent." Jackie and Tabby made similar statements when they said they grew up as tom boys. Tabby said, "But I guess I kind of prided myself in being tough. You know, well, that maybe part of that tom boy thing. My brother didn't want me to be crying, you know. Be tough. You can hack it. You can make it. And so maybe that's part of the difference." Kathy said she was a tom boy that never acted out the typical female roles. She became a pharmacist at a time when few female pharmacists existed. She wanted to be able to care for herself, and she was not sure she would ever marry. The masculine characteristics enabled them to be strong and independent at a time when they were unsure of their futures. The masculine characteristics were a guide to self-sufficiency, but did not provide them with the ability to do what they wanted. Their bodies remained impaired. For instance, as children they may have viewed themselves as tom boys 210 but were not always allowed to play ball with the other children. As adults, they may have been strong and independent but were not always commended for acting that way. For instance, Janice described how she was perceived as too strong a woman, which made work difficult. She said, "But now it's kind of like, and then in the last maybe 10 to 15 years or something, I seem to feel more so where this ego centered world of men is... They feel threatened because of my strengths." Deborah was told by a work manager that she came across too strong. In other words, the masculine traits, which enabled them to adapt to impairments, were seen as inappropriate traits in competitive situations, such as in childhood games or adult work places. My Feminine Ways Their feminine self was discussed in relation to their ability to be compassionate, to be creative, and to nurture. These were characteristics that the women discussed as being part of their feminine side as well as part of their role as women. They all discussed some variation of their ability to be compassionate, to create, and to nurture. These characteristics allowed them to express themselves as women and adapt to changing environments and their changing impairments. For instance, Tabby saw herself as having creative characteristics. She said, "Its cooler for a woman to be creative. I just knitted my granddaughter a cap, a winter cap. I had seen a girl with one similar at Wendy's. It was a creamcolored band with a green frog at the top of the cap and I said, oh, that is cool." Alita described having nurturing feminine characteristics. She said, "I've always been this way and it's too late to change. I think you either are or you're not. I 211 think it's a character thing that you have. Some of us are giving people and some of us are not. Some of us givers, some of us takers." Donna believed that many of her feminine traits were learned by women of her generation, not an essential part of being a woman. She said, "The younger women are more into numbers than the older women. The older women deal more with having compassion and being understanding." Judy thought being a woman was special because she enjoyed being pregnant and being a mother, which allowed her to nurture children. Judy said, "I always, I always enjoyed being a woman. I thought it was great to be a woman." Many of the women valued their feminine characteristics; they felt like they possessed feminine traits but their impairments threatened their ability to express themselves as feminine. In other words, many saw their feminine characteristics as being enacted through their bodies and the enactment could be altered by their impairments. When they were unable to enact the characteristics it threatened their belief in their abilities as women. Charlotte said, "I never had any problems with my sexuality. I don't mean sexuality; I just mean feeling like a girl. I always felt feminine. I always felt like... I didn't have problems that way. I just felt inferior over all." Later, Charlotte described how men would not allow themselves to love her because of her impairments. I always knew that they did like me or they wouldn't have been asking me out. But then when the deficits started coming up and it became more apparent, they didn't want to date anymore... I mean it's possible somebody could fall in love with me and marry me with this, but you have to get to the point to fall in love. Men, most men that I've gone out with my age and a little older, they don't want any baggage in their life. 212 Joann said an impaired body was harder to display as feminine because she was expected to physically enact her feminine characteristics. For example enacting feminine characteristics was done by wearing make up, wearing certain clothing, or wearing high heels. For example, Betty said, I wanted to wear pretty clothes. I was the chubby, fat one that didn't have a waistline that couldn't wear hand me downs. I would just love to have had their hand me downs because to me that had beautiful skirts and blouses. I always had to wear a dress because I didn't have a waistline and my clothes would tend to fall straight down walking the way I did. So I never...I got new clothes but I always wanted what they had. Enacting feminine characteristics was described again when they accepted caregiver roles, which were difficult. The act of care giving required physical involvement. Alita described the physical requirements of being a caregiver to her mother. But it was a lot of picking her up. She fell in the bathroom. I had to pick up. She insisted that she had to take a tub bath. She would get in there and I kept saying you can't get out mom. Once you sit down, I have to get you up. She'd get mad and she wanted to do it. So she'd stand there and then she couldn't get up so then I had to pull her up. All the things I wasn't supposed to do. Joann and Betty said that not doing caretaking and nurturing activities threatened their femininity. The Balanced Self The women described a need to balance their masculine and feminine characteristics to fit their needs to be women who could achieve and be independent while be nurturing and compassionate. The balance between the characteristics created equality within the self that enabled them to be self- 213 sufficient. Janice described how the female and male traits balanced her ability to care for herself. I just kind of think there's an equality there that I've had to be lonely, I've had to be the guy and the girl. The tom boyness, I mean my dad teaching me how to put chains on a tire and how to change a tire, and all those kinds of things because I was the son that had died, I was the son that he didn't have. But then also they wanted me to be independent so where did the line stop. Maybe I would not have been as strong, you know, as capable to take care of myself. So you just never know. Alita was able to combine her feminine and masculine characteristics and enact them with her body. She remembered being satisfied with her ability to do that; she took her independence and combined it with a comfort in displaying her feminine body as a free woman. She said, I didn't wear a bra for a long time. I had nice little firm ones and I didn't wear . . . and I still hate bras. That's the first thing that comes off when I come home. It was just a liberator. Disco. You kind of you could dance by yourself. You didn't have to have a partner. You could just dance. Women and women danced together. It was fun but it was probably more than anything associated with for me was liberation, freedom. In a lot of ways as a woman, in a lot of ways as a Chicano and a lot of ways is just being proud of who I was and what I was. Being happy about all of it. Donna described herself as having both masculine and feminine traits. She said she was criticized for having both, and it was not until she was over 50 years of age that she felt comfortable with these characteristics. You don't know if you're male, female. You don't know what your gender is or anything because all you've done is responsible for everybody else. And played whatever role you had to play to get it done. So I will never lose a lot of male characteristics because I grew up with them but I no longer am worried about whether about oh, what am I trying to say? I don't feel like a bad person anymore. 214 Charlotte said that her children saw her as the weaker parent until she was able to combine both her feminine and masculine characteristics to show she could be nurturing as well as strong and independent. She had to assert herself to get what she needed for herself because in her later years there was no one left to care for her but herself. Discrepancies in Womanhood The women had a personal view of what it was to be women, which may or may not have been the way they lived their lives. Tension occurred when the women perceived their lives as contrary to their ideal vision of womanhood. In order to illustrate the women's ideal views verses the actual lives of the women and how that affected their ability to adapt to changes with aging four examples were presented. The first example was Betty. She was someone who had a discrepancy between her ideal view of being a woman and her own experience. Betty wanted to be a housewife and a painter since childhood. She said, "But as a kiddo, a child, a young child, I really didn't have a goal. I wanted to be a housewife." Later, she added, Well, I really wanted to do more cooking and quilting....I never had really wanted to be a career person at all. As a child my ideal was to be a home maker and to do art. I always felt like....I had an aunt that did some painting, and in my grandmother's house, above her little old door in the kitchen was this little picture of a canoe and a little stream and mountain and some trees and a moon, it was a night scene. And I just thought oh, to be able to paint like that. Betty became a teacher and taught until she retired. She never thought she would work as long as she did but her husband was unable to maintain steady 215 employment. They always needed the extra income. Betty also wanted to be a mother but was unable to conceive. The discrepancies between her ideal of what it would have been to be a woman and her actual experiences created a tension. She worked out strategies to adjust to those discrepancies. For instance, she talked of inspiring her cousin to be an artist, and she brought in foreign exchange students in order to understand the experience of parenting. Overall, she said, "You learn to adjust and you learn to accept things as they are." When she did not develop a strategy contrary to her view of being a woman she suffered. For example, she could not leave the house because the lift on her car was broke. She was waiting for her husband to have it fixed. It was not her role to have their vehicles serviced. It was not the role of a woman to take charge and call someone to come to her home and fix the lift. A second example of a woman who had a discrepancy between her ideal and actual development as a woman was Patsy. She wanted to be a wife and a mother. She was both. The discrepancy came when her husband left her and her second husband abused her. She had to work and live in a shelter with her children. This was not her view of womanhood. She said her view of being a woman was one who was married and gave herself to a husband who respected and cared for her. As far as being a woman, I think a woman should be loved and respected but I think she needs to be under the umbrella of her husband. She should not have all the burdens put on her. I think that's the reason that God said that we're to be obedient to our husbands and not for him to step on us or slap us around or be our boss. To be our helpmate. I think you're supposed to be as the husband is the head of the house, you're supposed to be in a place of honor. We don't need all the responsibilities of everything that sometimes we put our self in there and that responsibility of. As far as 216 women's rights, yeah. I think we have rights. We have rights to have fresh air. To breathe. We have rights to raise our children in a Godly manner. In a manner that they should be safe and not scared every morning. Do we have rights to our own bodies? To a degree. Bodies are not ours. If we're married, our bodies belong to our husbands. Patsy adapted to this discrepancy by realizing that her experiences as a woman were unlike those that she wanted. She knew she might never exist as her ideal woman and it was a continual struggle. She continued to seek an ideal partner but was prepared to care for herself. She said, "I see it as a life struggle. I told Joe the other day...I said buddy I've got my talons out, you better behave yourself, meaning as sweet and gentle as I like to be I still have that part in me that, you know, leave me alone or I'll rip you to pieces." The third example of a woman with a discrepancy in her view of womanhood and her actual life was Charlotte. Again, she wanted to be a housewife and a mother. Her life did not work out that way as she aged. Her first husband left her. Her second husband died after 1 year of marriage. She was living with friends on a fixed income. She saw women as the weaker sex who needed to be cared for by a spouse. In an ideal world, the man is the head of the house. He works. He provides so; therefore, the woman would have a provider. That's in an ideal world. We're talking about physical needs, emotional needs. Women are usually, even though Women's Lib doesn't like to hear it, usually thought of as the weaker sex. Earlier in life, Charlotte had adapted to the discrepancy by working because life demanded it, but her health prevented her from continuing to work. She was far removed from her ideal woman because she was unable to be married and cared for by a spouse and she could not work to care for herself. Ultimately, she had to 217 accept the discrepancy and negotiate government programs in order to receive enough financial assistance to pay her bills and survive. I think that each day is a challenge to find something that you can do and do well and accomplish something. I think everybody has to have that feeling every day that they've done something. I try to find those things every day, something. Types of things that I have to look for are so different from what other people do or what I used to do. It's very different. It's very difficult to . . . I used to have been able to get up and put something on in the crock pot before you go to work. Then work ten hours, come home and have friends over and eat what you cooked in the crock pot, and play a game of cards. You know just a full day to where you have to just really negotiate your day. You have to give and take. The final example was of a woman whose life was similar to her ideal view of being a woman. Jackie never wanted to marry or to have children. She wanted to have a career and to have a home. The ideal woman was independent and strong but able to care for others. She became an army nurse. You don't need a man to, you know, be a woman...I just didn't have the endurance to continue but I could do everything. But no, I knew I could be self-sufficient. I didn't want children. I didn't want to take care . . . I didn't want to cook and clean for somebody else. I don't even do it for myself. I have a housekeeper you know. No. Never. Jackie planned her life around her ideal of what it was to be a woman. Then I realized okay, I've got to have a future. I've got to take care of myself. I don't want to get married. What retirement am I going to have? Social Security? Forget that. You couldn't live off of that so that's when I thought well, okay, military is pretty good. Ten years is the point you either stay in or you get out. Then I realized okay, I've got to have a future. I've got to take care of myself. I don't want to get married. What retirement am I going to have? Social Security? Forget that. Jackie's strategies for adjusting to the changes with aging coincided with her ideal of womanhood. She had the resources she needed for health care through the 218 military and she said her needs for nurturing were met in her relationships with her cats and her nieces. Summary In order to adapt to the changes associated with aging the women had to balance their perceptions of self as being both masculine and feminine. These characteristics allowed them to be strong and independent women who could ask for what they needed to survive while nurturing their bodies and those they cared for in their lives. At the same time the women's ideal views of being women influenced their experience in the world. In other words, their ideal view of what it meant to be women and live as women in the world were used as criteria for which to judge their lives. The women were trying to act in ways consistent with their views of what a woman was; they were frustrated if they had to act out their lives in ways that did not coincide with these views. Overall, there was a tension between their ability to balance perceptions of themselves and perceptions of what a woman should be. They struggled with this tension while adapting to ever changing impairments that demanded they continue to assert themselves in order to survive. 219 Chapter 6: Summary, Conclusions, & Recommendations This chapter summarizes the study, provides conclusions, and makes recommendations for future studies. Specifically, an overview of the purpose, research question, methodology, data analysis techniques, and findings are provided. This is followed by a discussion of conclusions drawn from the study findings. Finally, a discussion of recommendations for future studies, nursing practice, and health policy is detailed. SUMMARY The purpose of this hermeneutic phenomenological study was to explore and convey an understanding of the meaning of aging for women with childhood onset disability. This was a qualitative life course study of aging for women who had impairment related to paralytic polio at age 13 or younger. It was the intention of the researcher to gain descriptions of the experiences women had with growing up and growing older with impairments. The researcher also intended to gain a hermeneutic phenomenological description of the changes associated with aging, a description of how they adapted to those changes, and a description of how perceptions of gender influenced their ability to adapt to the changes associated with aging. Thirty-two women were interviewed two to four times over a 6 month period for a total of 96 interviews that lasted approximately 1 to 4 hours each. These interviews were transcribed into nearly 4,000 pages of double spaced text. Of the 32 women who participated in the study, 25 were chosen for 220 the final analysis of the lived experience of aging with a childhood onset disability. The women's descriptions were analyzed and presented using hermeneutic phenomenological methods (Cohen, Kahn, & Steeves, 2000). For purposes of gaining an understanding of aging produced from the vast amount of text, the life course was broken down into childhood (0 to 12 years), adolescence (13 to 22 years), young adulthood (23 to 34 years), middle adulthood (35 to 54 years), and later adulthood or now (55 to 65 years). Within each period of life, areas of the life course paradigm, which included the environment, their individual perceptions of self, and their relationships with others, were used as an organizational and sensitizing framework to give structure to the life course. Themes and sub-themes that described the changes associated with aging and how they adapted to the changes were described, as were the themes and sub-themes that described how their gender impacted their experiences. Findings indicated that their childhood was characterized by feeling peculiar, which represented the way the infection disrupted their existence as the children they might have otherwise been without polio. Being peculiar meant the women were special, distinctive, and odd, which represented the way the women felt within their bodies as they were unable to move or will their bodies to action. It also represented how they lived in the world. The peculiarity of their bodies was embedded within a time and place that demanded people do for themselves in order to survive. During this time, the women interacted with healthcare providers who frequently treated them as uninformed objects. They remembered parents 221 who sacrificed for them while pushing them to do for themselves as much as humanly possible. As adolescents, the women became conscious of a growing potential for a traditional or normal life. They were also becoming adolescents in a time when people learned the need to question authority; therefore, these women learned to assert their will within their relationships. They learned to assert their will in order to gain access at a time when access was not a legal right. As young adults the women began to achieve within the roles they had chosen. Their bodies and experiences were no longer perceived as peculiar. They were demanding excellence from themselves in every relationship they had. The women's achievements fed their desire to do more with their lives during a time when women were fighting for equality in environments that were openly discriminatory. Middle adulthood was characterized by the women achieving success while pushing their bodies to decline. The decline threatened their past, present, and future identity. It could not be ignored. During this time, many of the women felt a commitment to also care for ailing parents. In later adulthood, the women were focused on preserving their bodies through efforts to conserve energy. They were no longer pushing themselves to achieve. They were preserving their bodies to do what many took for granted. They no longer had the energy to overcome obstacles in the environment that they took for granted as younger women. They were learning to relate to others as interdependent women. It was no longer a time and place where people did for themselves. With age the women learned that people do for each other. 222 The meaning of the changes they associated with aging and how they adapted to those changes were described with four themes: Aging and Polio: It's Just Part of Me, Slowing Down, the Particulars of Aging, and the Journey that Changes You. The women saw and felt changes in their bodies that were the result of both polio and aging. Aging meant that had slowed down; they were no longer able to sustain the efforts it took to push their bodies to overcome obstacles in their daily lives. Given the combined affects of aging and polio, the women knew they were aging in a manner that was out of synchrony with those who did not have impairments. The women's experiences were not similar to those reported by friends or relatives, which added to the unique experience they perceived. They saw aging as a journey that had changed them in form, perception, and ability. The women considered the meaning of aging within the context of their ability to overcome continued impairment by changing roles, activities, and perspectives on life. Success in aging was based on their ability to find synchrony between how they perceived themselves and their ability to act on their own behalf. Finally, how gender impacted their experiences was considered in the context of aging and impairment. Two themes emerged from their stories: Perceptions of a Balanced Self and Discrepancies in Womanhood. Again, adapting to the changes associated with aging was based on the women's ability to find synchrony between how they perceived themselves and their ability to act on their own behalf. Their gender was largely perceived as having both masculine and feminine characteristics. They were raised to be independent, self-sufficient, 223 nurturing, and compassionate beings. They had to balance these characteristics to assert what their needs were in society while nurturing and being compassionate to themselves and those close to them. At the same time the women had views of what it meant to be women. Those who lived lives differently from their perceptions of what it meant to be women found adapting to the changes with aging most difficult. Examples were provided to illustrate this point. In sum, this was a study of the meaning of aging for women with childhood onset disability due to paralytic polio at or before the age of 13. Thirtytwo women participated in the interviews, while the stories of 25 were used for the hermeneutic phenomenological analysis of aging. The life course was detailed from childhood to later adulthood. Moreover, the meaning of aging and the influence of gender on adaptation to the changes associated with aging were described. Overall, the women committed their energy to living a full life. They adapted to increasing impairment and unforeseen events through various strategies over the life course. They chose strategies that allowed them to maintain their perceptions of themselves while acting on their own behalf to fulfill the roles they wanted as women. DISCUSSION This was one of the first known qualitative studies to integrate the experiences of gender, aging, and disability within a life course paradigm in a sample of women large enough to reach saturation. The lived experiences of the women from childhood to later adulthood were analyzed into themes and subthemes in order to give others a clearer understanding of their life course 224 experiences and the meaning they assigned to aging. The findings indicated that age and gender interacted over time to influence the women's ability to adapt to their changing bodies. The women perceived changes in their bodies and in their perspectives of self growth. The women were able to adapt to the changes with aging by finding synchrony between their perceptions of self and their ability to act on their own behalf. The women perceived that their gender impacted this process because the balance between masculine and feminine characteristics was a salient aspect of their selves and because the meaning of womanhood was a marker they used to judge their selves. Impairment did not necessarily damage their ability to act on their behalf or to become their ideal women. Many other life circumstances, many of which may be common to women without disabilities within society, combined with their impairments to influence the meaning they gave to aging and how they adapted to aging. This hermeneutic phenomenological study provided evidence for the assertion that functional decline with age for women with disabilities may not be a purely biological necessity (Stuifbergen & Becker, 2001); behavioral components were perceived to have been influenced by their psychological, social, and environmental circumstances, which might have influenced the rate and timing of decline. In other words, these circumstances were perceived to have affected their life choices and their subsequent health. The women gave specific examples of how their perceptions of their psychological, social, and environmental context impacted their decisions of how to care for their bodies. For example, the women grew up in an environment where people did for 225 themselves and they were encouraged to be independent by their parents. Subsequently, the women grew up with a strong desire to be self-sufficient women. Over time, their will to achieve was a strong push for them to continue despite physical consequences. Moreover, the women pushed themselves to fulfill multiple roles in order to fulfill their need to be women in this society, while frequently ignoring or not being able to attend to their health. At first glance one might discern that women with impairments should not push themselves to achieve, especially while fulfilling multiple roles, but this may not be a reasonable recommendation. It should be considered that the women chose their multiple roles within the defined cultural expectations of what it was to be women. The women were not spectators to the culture in which they aged; they were participants within their culture succeeding in their culturally assigned roles to the best of their ability. The women stated they did not regret pushing themselves; they valued their achievements after experiencing decline. One cannot expect women with disabilities to take on fewer roles or strive for fewer achievements within society in order to preserve their bodies. What would they be preserving them for? After all, their ability to adapt to change was based upon their ability to find synchrony between their perception of self and their abilities to act on their own behalf; the women balanced perceptions of their self with perceptions of what it was to be women. Fulfilling multiple roles and becoming independent was part of their adaptation to aging across the life course as women. It would be reasonable to recommend that women with disabilities live the lives that balance their perceptions of achievement in womanhood with their perception 226 of their bodies' needs; not to live lives contradictory to their perceptions and expectations as women. Achievements were a factor in both the satisfaction they found in life and in their desire to push their bodies. The women were able to achieve numerous career-related awards. They also reported working longer hours and doing extra work in order to prove themselves as capable. This had a high cost but many said they would not have done it any other way. It is a concern, however, that a woman with a disability would perceive the need to work this hard in order to maintain or gain employment. The women's intrinsic push to work harder than others without impairments may limit their time in the work force and there are few societal resources available to support women who leave work at an early age. It was the purpose of this research to convey an understanding of how women with disabilities age. As the reader moved through the descriptions, I hoped he or she would compare the aging process of these women to their own. In doing this, one might ask how different and how similar their experiences were from those of women with disabilities described in this document. In comparing this research to prior findings of aging women, similarities were found in women of a similar age and in women of an older age. For instance, Rossi (1980) found that women of the baby boomer generation may experience strain in their lives as they try to live their daily lives during times of social change. Although the exact nature of their lives was different, the women with polio also experienced strain as they tried to live their lives during times of change in disability and women's 227 rights. For instance, the women acknowledged the strain in communication and interaction that exists between people with and without impairments. Some also reported discontent with the women's right movement because its principles clashed with the way they wanted to live their lives as women. There were similarities in these women's experiences and the experiences of the elderly women described by Day (1991). The women in Day's study described independence and ability as important factors in their well-being. The women were balancing health problems with their desire for independent living. They did not want to be burdens upon their children in their old age. Few wanted to live with other people and those that did were frequently less content. This was similar to many of the experiences described by the women with polio. The women in this study did not wish to be a burden upon their children or families and those that lived with friends or children voiced discontent with these situations. A difference in the women with polio, however, was that they were 20 to 30 years younger when they described these experiences. The women in this study compared themselves as women to their ideal women when they discussed the meaning of aging. Many of their lives as women were different than their ideal view of womanhood. This finding was consistent with self-discrepancy theory as described by Higgins (1987) and Heidrich and Ryff (1993). According to Heidrich and Ryff successful aging is related to how well people's views of their ideal self matches with their view of their actual self. This study contributes to that theory by showing how views of an ideal gender may contribute to successful aging. 228 This study supported the conceptualization of paralytic polio as an experience of disability not chronic illness. The women were raised from childhood not to take on a sick role identity; therefore, the women did not view aging with polio as aging with illness. Many studies (Charmaz, 1991; Lewis, 1992; Thorne, 1993) have relied upon chronic illness perspectives to situate the experiences of their participants. This study provides evidence that women with polio have experienced their lives as impaired but not always ill. Perceiving the self as different but not ill was a prominent aspect of their disability experiences. Their perceptions of not being ill facilitated their normalization into various roles as adult women. Many of the women did not know their bodies without the effects of polio because they were infected at such early ages. There was an altered ability to use the body but the body was not ill. The body could be used to its full potential. The lived experience with a life-long disability, such as those related to polio, may be different than the lived experience with a chronic illness over the life course. This study contributed to the understanding of life course impairment due to paralytic polio. From the previous research with 15 polio survivors by Wenneberg and Ahlstrom (2000) it was learned that polio survivors may progress through the acute phase with severe illness, the rehabilitation phase, the phase of stability, the phase of functional loss, and the phase of new dependence on technology as they age over the life course. The current study of women aging with polio reported here added to that knowledge by conveying how those phases may blur or overlap. The women's abilities may have declined over time with 229 increasing impairment but the salient roles and social obligations within their lives were the factors that defined these phases in their minds. In other words, a phase of stability was stable if the self and the body were able to achieve the woman's desired end within her chosen roles. Instability within the body was over looked if achievements were attained. Once impairment became an obstacle to achievement then the phase of decline was perceived. The women admitted knowing that changes in their body were happening long before they verbalized knowledge of decline or sought help for decline. The phases of decline described by Wenneberg & Ahlstrom (2000) were defined by these women as relative to their ability to fulfill their roles as women and this varied over the life course. Living in the world was an embodied experience for the women. Having had polio was an experience in our society that was perceived through their bodies. The experience of self as disabled was not a separate experience from any other experience in their lives. As women, they journeyed through life in their bodies, which were impaired due to the effects of polio from a young age. From these experiences the women saw their bodies from within a continuum of ability, which had changed for them as it does for everyone. One embodied experience the women had that was worse than having polio was abuse. Abuse was a frequently reported occurrence during the life course of these women. The women were not recruited for a study of abuse nor were they specifically asked if they were abused. The occurrence of life time experience with abuse was similar to the findings of Young and colleagues (1997). They reported that 62% of their participants had experienced abuse in 230 their lives. In the current study, 64 % reported some type of abuse over their life course and of those 16% reported both childhood and adulthood abuse. These women reported childhood sexual, physical, and verbal abuse by parents, relatives, or healthcare providers and of adult physical and sexual abuse by marital partners or healthcare providers. Their stories of abuse were told as part of their life course experiences as women with childhood onset disabilities and should be understood within that context. The abuse was contextualized within their embodied experiences as women. Although quantitative studies have examined the incidence of abuse, few studies have examined the experiences of life course abuse in aging women with disabilities. Instead, abuse is often compartmentalized into domestic violence, childhood abuse, or sexual violence against women. The stories told by these women indicated that the abuses were all attacks on the self and body regardless of the labels given to them at any certain point in time. The women in this study described feeling less self-esteem and problems with trust after the abuse. It may be helpful to study different types of abuse in order to acutely treat the women and stop the perpetrators; however, women aging into later adulthood with disabilities may need to deal with multiple types of abuse for different reasons. Many of the perpetrators are long deceased, and the problem may not be ongoing abusive situations. This does not mean the problems are gone. Many aging women with impairments may need to adjust to the psychological issues surrounding the various abusive situations they have faced as they age, especially if they experience increasing vulnerability with age. 231 As suggested in the literature, the women were capable of integrating both positive and negative experiences in order to gain meaning in their lives (Hulbert & Lens, 1988). The women reviewed their lives to find experiences that helped them to gain meaning in aging. This process helped them to make their lives their own. Frequently, the women would find growth by comparing negative experiences in their youth to positive experiences in later adulthood. The women also compared positive experiences in their young adulthood to negative experiences in later adulthood to demonstrate their ability to adapt to the problems. The women would point out how they had changed in perspective, ability, and wisdom. The women experienced developmental change with age; as the themes over the life course were reviewed it was clear that their age influenced the way they adapted to their disability. Their impairments were varied both in severity and in impact upon their individual lives. Yet, the response to the impairment changed in common ways for the group over the years. Personal and social views of their age influenced their reaction and the reaction of others to their impairments. For example, the women were encouraged to be independent as children but encouraged to be more dependent as older adults. They were no longer treated as na ve, uniformed objects to be cared for by those with authority as they were when they were young. If the women perceived they were being treated this way they asserted their disdain for this treatment. At the same time, as older adults they were expected to seek out help when needed. The women's perspectives of themselves and their bodies also changed. They knew to think 232 before they acted and to act on their own behalf. It was clear that the women perceived developmental changes over the years in themselves and in the reaction of others to them. The experiences reported with aging over the life course contained commonalities that emerged within each category of life (childhood to later adulthood). These were not, however, considered fixed age categories for experiences. For instance, some women experienced decline earlier than others, while some women entered the work force at different times. What I reported was the common experiences that emerged. In other words, as the women viewed aging from different perspectives these common experiences emerged within each category. Further reports using case studies methods will allow for the analysis and reporting of individual differences within the participants' experiences. In Gadow's (1982) phenomenological treatise on aging and illness, she posited that aesthetic meaning could be found in old age as the elderly viewed their aging bodies. In this study of aging with polio, meaning was found in their experiences; they found meaning in their achievements and triumphs over their life course. In later adulthood, the women also found the need to acknowledge and value their bodies' contribution to the lived experience. Many were committed to improving their bodies' condition. After all, they could not exist in the world without their bodies. These women did not view themselves as old and many did not like the changes they saw with aging in their bodies. They did not find aesthetic value in the appearance of their bodies, but they found a value and commitment to preserve their bodies. 233 Putnam (2002) posited that current gerontological theoretical frameworks hold potential for being linked with disability theories to guide research on aging with a disability. Based upon this research, Baltes and Baltes' (1990) theory of selection, optimization, and compensation could be adapted to understand the experience of women aging with childhood onset disabilities. Baltes and Baltes focus their theory upon how an individual activity is continued by an aging person with age-related decline. I would suggest that in order to adapt this to a gerontological framework for women with life long impairments, it must be considered that completely new tasks may need to be selected over the life course as abilities change. The environments of the women must be optimized with age due to changes in disability with age. Moreover, the women must continually compensate for changes in their bodies by using various accommodations. For women with childhood onset impairments, selection, optimization, and compensation is a life long dynamic process that may require creativity and flexibility in order to select new activities, build optimal environments, and compensate for changing abilities. The theoretical foundations behind the concept of successful aging (Rowe and Kahn, 1987) did not allow for an understanding of the aging experience of these women living with impairment related to polio. The women frequently experienced life altering events and managed multiple roles that may have contributed to their physical deterioration. These women were interviewed about their life course experiences, which indicated that many adapted to multiple traumatic events in their lives with varying levels of residual effects. It would be 234 inappropriate to judge one woman as aging more successful than another woman based upon researcher defined health-related criteria. A more appropriate theoretical concept for understanding outcomes related to aging with disabilities would be resiliency. According to Gattuso (2003), resilient aging is a process of integrating loss and growth over time in order to construct a self-image that affirms to the woman that she is well despite sustaining mental and physical injuries to her body and mind. Women aging with impairments may acquire an ability to construct memories of the loss they experienced into evidence that they are able to sustain enumerable problems, both physical and emotional, and remain productive and positive members of society. RECOMMENDATIONS FOR FUTURE RESEARCH This research indicated that interventions adapted to improve the health of women aging with polio should be tailored to their need to fulfill roles as women while fostering the preservation of their bodies. The goal of the intervention would be to turn their will to achieve in a positive direction that might benefit health as well as improve quality of life. For instance, one of the women adapted to the changes with aging by inventing adaptive devices for other women with impairments. She patented two inventions, sold them, and used them for her own needs. It is not suggested that all women do this. It is suggested, however, that interventions be designed that fulfill both the needs of the body and the self. Being told to quit work and rest cannot be the only intervention for women who have demanded more over their life course. 235 Limited time in the work force may have considerable affects on quality of life from a social and financial perspective. During the time of these interviews, the women and society were not prepared for early retirement due to disability. Although most of the women were able to qualify for disability social security benefits, this was stated to be around $500.00 per month. If the women did not work long enough for an employer with retirement benefits or were not married to someone who had a retirement package they reported a limited income. Moreover, two women had invested money for retirement but lost it in the recent recession; therefore, they were unable to benefit from those efforts when they retired. The women described increasing medical and health-related needs which included medications, assistive devices, personal assistants for grooming, house cleaning, and/or lawn care, and physical therapy at a time when they were going on a fixed income. Future studies should address how women with impairments may best plan for retirement, which may occur at earlier ages for these women than for other men and women in our culture. The women in this study completed a demographic form that asked about employment status. A large portion of the sample indicated they were retired when they completed the fill in the blank form. Others indicated they were unemployed due to their disabilities. During the course of the interviews all but one of the women indicated that the reason they left the workforce was because of their increasing impairments. This has implications for survey research on work and women with disabilities. It is more socially desirable to state that the reason for unemployment is retirement. Over time, with increasing age, the person may 236 claim retirement status instead of unemployment due to disability. Along with employment status, researchers may want to ask the reason the person left the work force and at what age. This study was limited to the age cohort between 55 to 65 years of age. It relied upon the memories of the lived experience of growing up and older with impairment. Future studies should study various cohorts separated by varying ages. There is also a need for longitudinal studies that follow women with disabilities over the life course. Longitudinal studies could document objective and subjective descriptions of change with aging. Future studies should also compare these findings to other groups aging with childhood onset impairment. One might study the experiences of men aging with impairment. Studying a group of men aging with polio might indicate differences in how gender affects experiences between sexes. Moreover, studying women with other types of impairment might provide needed information on the similarities in the aging experiences across disability types. This could lead to interventions for women aging with various impairments. Two possible groups to study would be those with juvenile onset rheumatoid arthritis and those with congenital cardiac abnormalities. Both of these groups have been neglected in the literature from a life course perspective. Another needed area of research is with minority populations aging with childhood onset impairment. I was able to recruit five Hispanic and two African American women for this study, but more were needed to interpret the life course experiences of the different cultural groups. Based upon the work in this study, 237 saturation would be possible after approximately 15 to 20 participants in each group. Life course descriptions of the lives of women with disabilities offer the reader a chronology of perceptions that may indicate critical times that may benefit from intervention (Frank, 1996). According to these women, they began to experience decline in their young adulthood. They also experienced numerous falls and accidents during this time that led to further health problems. It would be beneficial to study women with other types of disabilities to see if there are commonalities in this experience. If there are commonalities, interventions to prevent accidents and decline in young adulthood may postpone further decline in later adulthood for women with multiple types of physical impairments. This would be an important area for further research. Another critical time in the women's lives was during later adulthood when they began to lead interdependent lives. Many of the women found asking for assistance difficult. Some verbalized that they wished their families would know to do things without being asked. Other women found it easy to ask for assistance once they began to realize their ability to barter for services. For instance, they had to realize they had something to offer the person helping them. Interventions developed to help women with disabilities adjust to giving and receiving help might be critical to psychological adjustment during later adulthood. 238 RECOMMENDATIONS FOR HEALTHCARE & PUBLIC POLICY An important finding of this research was that women aging with impairments experience many of the same roles and social pressures that women aging without impairments experience. The problem was that many of these issues have been neglected or unexplored in women with disabilities. How they experience their lives and what affect various social problems have on their lives has only recently been included in such initiatives as Healthy People 2010. Women with and without disabilities have commonalities in experiences, therefore, there is reason to include and adapt our health care guidelines to include women with disabilities within all policies written for women. Moreover, it is the responsibility of all women to push for social change to ensure that women with disabilities have improved lives as they live out many of the same social roles and obligations as women without defined impairments. This position may appear to be without controversy but feminists have historically argued for social change based upon anti-essentialist arguments because essentialism pushes women into a lesser or different category. These arguments against essentialism have led to further questioning of the meaning of gender. The anti-essentialist argument posits that women do not represent one united group (Tong, 1998). The middle class white woman's identity is not the identity of the black woman (Collins, 2000) or other women separated by class, nationality, and /or race. Moreover, women were separated by sexuality, age, and disability. Women have been left without a united reason for grouping together, 239 for calling themselves to action, and for studying their situation because women are said to have differing identities. At first glance, I began to think that no theoretical or philosophical perspective could unite women without reverting back to an essentialist view. Multiple identities of being women were needed to promote discourse on women in different situations. In other words, women with disabilities needed to be separated as a group in order to discuss their needs. If women were united by commonalities that did not allow for differences, those commonalities would be equal to stereotypical essentialist characteristics. The special needs of women with disabilities would not emerge if they were not separated out as a group. In other words, women would be described as being stereotypically alike in some fundamental way and their individual needs would not emerge. Women's multiple identities allowed people to see women in differing contexts that fragmented but also promoted women's social position. Yet, the question would always arise as to whose voice was being heard and whose voice was being answered (Alcoff, 1991-92). If the voices of women without impairments were heard as different than the voices of women with impairments, whose voice would be the loudest and whose voice should health care researchers and providers listen to when making health care and policy decisions? Is it practical or beneficial to have separate health care policy decisions for women with and without impairment? Furthermore, when individual medical care becomes a question of social causes that impact the body, which guidelines for health care do practitioners follow? Can guidelines be designed to apply to a large 240 diverse population or would our entire health care system have to revert back to standards that each health care provider decided upon within the context of each interaction? This would place the person seeking care in a position completely vulnerable to the ability and mind set of the practitioner diagnosing their body without any guidelines that specify what should be done. In order to advance my position on the combined efforts of women for the good of women with and without impairments in a postmodern discourse, the concept of positionality as posited by Alcoff (1997) was used. Within this view, the woman was not an essentialist being but a socially constructed person that has been defined by her self in the socio-historical context that situates her (Alcoff, 1997). The anatomy and the society do not separately define the sex or gender (p. 351). The woman was defined by her perception of womanhood combined with her culture's influence on her perception set within an evolving point in time. This definition of woman emerged not as an objective label but as a position from which to take action as a united group (Alcoff, 1988). This view does not demand that only one identity be that of woman. It acknowledged that society combines with the individual to create a force that defined the woman. Women of all abilities could combine to fight problems existing in an area based on their gender because the society has categorized them as that object, woman, and their identity has been changed due to that categorization. Society defines the subject and the subject responds to it as it develops that identity. 241 Young's description of a social collective (Young, 1994) was also important for use in this argument. To understand women in relation to a collective without placing them into a category of common attributes, Young (1994) used Sartre's serial collectivity. This work described how women, who were a series, combined as a group over a self-conscious purpose that united them. When women were a series, the objects that surrounded them united the women. When women were a group, the purpose behind an action united them. When women were a series their identity was not defined by membership in the series (Young, 1994), and they were interchangeable people. This means that women come and go in the series of women like a group shopping at the grocery store. They do not take on grocery store identity and any woman doing her shopping there can be a member of the series. However, if the grocery store began to hike prices and the women united as a group to combat that inflation they would take on a common purpose and form a group. This would be independent of their separate identities of race, sexuality, or abilities. Through this analogy using Sartre's serial collectivity (Young, 1994), women could become a group combating a problem, such as those experienced by women aging with paralytic polio. Using the concepts of positionality and serial collective, I can assert that women and women with disabilities should be viewed as a group with common interests. They should unite to help one another to overcome common health and social problems, such as obesity, sexual abuse, and depression. For purposes of health care women must unite in their efforts to gain the best possible health. This means that guidelines in women's health should not 242 be viewed as complete by any woman without being complete for all women. For instance, multiple resources are available for practitioners on osteoporosis prevention. General guidelines often do not include ways to prevent osteoporosis in women with disabilities. These types of guidelines for women with disabilities have been published in separate journals. Practitioners must look for these guidelines separately. This type of separation of women's health care guidelines must cease in order for all women to gain equal access to the best possible care, and all women must unite to push for equal access to health care for all women, which include those aging with life long impairments. Building upon the first recommendation, a second policy recommendation is related to the use of age entitlements for the distribution of retirement benefits. Chronological age is the basis for social security benefits despite ambiguous indications for it as a meaningful reason to distribute benefits. Using the age of 65 excludes benefits for women with disabilities who retire due to increasing impairment that prohibits their continued participation in the work force. Most of the women in this study were able to gain minimal benefits from disability insurance; however, the process was described as humiliating and taxing on their already stressed abilities. Moreover, many of the women preferred to describe themselves as retired, not unemployed due to disability. They indicated further disability-related stigma when leaving the work force despite admirable work histories that should have been praised. All women should consider the ramifications of the current policy. Social security retirement should be work and 243 ability graded not an age entitlement that some may never reach and others can work far past. A third recommendation for those concerned with policy is the use of women who have lived a significant portion of their lives with impairments as consultants in environmental accommodations built for persons with disabilities. Accommodations are intended for people with impairments. Moreover, they may be an expense to the person installing them. Accommodations that do not help persons with impairments or humiliate them during use are not an effective means for improving access to the environment; therefore, before installing an adaptation consult a knowledgeable and sensitive person with impairment. After all, there is an emotional and utilitarian aspect to each accommodation. Something might work to provide access but break down the spirit. This recommendation would be crucial for hospitals and clinics. During accreditation procedures hospitals and clinics could be graded downward for not having a disability access review board that contains a person aging with a disability. Moreover, hospitals and clinics should routinely assess their environments on both emotional and utilitarian aspects of their accommodations. There is no excuse for inaccessible hospitals and clinics. Finally, policy makers must consider that the same environmental accommodations may not meet the needs of the same woman as she ages. The women in this study described how their energy and agility were greater during their youth than in their later adult years, which made it easier to use assistive devices and access places when they were young. As they aged, they slowed and 244 became less agile. Based upon this information, it is recommended that accommodations be based upon a policy of least resistance within multiple modes of access. In other words, architects should consider accommodations that require the least amount of energy but useable by those using electric wheelchairs, manual chairs, crutches, and/or braces. The same applies for any public area or utility, such as retrofitted buildings, parks, doors, toilet paper dispensers, and sinks. RECOMMENDATIONS FOR HEALTHCARE PROVIDERS According to Toombs (2001) studies that convey phenomenological experiences of disability provide "invaluable information about the everyday world of those who live with disabilities" (p.248). This information can guide therapeutic intervention, such as how "best to address the personal, social, and emotional challenges" (Toombs, 2001, p. 248). Healthcare providers should read this study of the lived experience of aging with polio as a source from which to compare the experiences of their own patients. This may help the provider to understand their patient's response to their recommendations and actions. The ability of women with polio to adapt to changes with aging should be encouraged in meetings with health care providers. The women in this study prided themselves in their ability to mentally strategize to create new ways of doing usual activities of daily living. Other women with life long disabilities, such as polio, should be encouraged to strategize and suggestions should be made that may help them as they adapt to their changing environments. Health care providers should not consider their role as the leader of the encounter. The women 245 were often upset by physician who did not listen to how they had adapted to multiple changes along their life course. Healthcare providers should consider themselves facilitators of adaptation to change. Health care providers offering interventions designed to promote the health of women aging with the effects of paralytic polio might proceed by highlighting how the women might reap the rewards of continued achievements in their lives if they promote their health. Health promotion at the expense of their roles as women was not reported as a motivator for women with disabilities. Currently the women described being told by health care providers that if they do not stop their current activities they will continue to decline and not be able to perform any activities. The women felt threatened by negative images of decline with age. It is difficult to know if these images affected their health as suggested by Levy (2003). Health care providers should work with the women to find out how good nutrition, exercise, and rest can be negotiated into their existing lives using positive images of those who have aged well instead of negative images of certain decline. Obesity was a common problem for the women after they tried to conserve their physical abilities by using assistive devices and pacing themselves in their activities. The women were not given any clear guidelines for how to conserve energy without gaining considerable weight. The weight gain caused further impairment and disability, which led to co-morbid conditions and social isolation. It is recommended that health care providers gain dietary and exercise consults for those converting to the use of wheelchairs for mobility. 246 Finally, health care providers should carefully weigh the long term consequences of therapeutic interventions prior to recommending them to women aging with polio. Interventions may be implemented to help one aspect of their life or their body but have negative consequences on other aspects of their lives. For instance, a lift provided to balance leg length may alter the hip movement causing serious joint damage or falls. Moreover, quitting work may provide the woman with time to rest but cause the woman to be homeless or without the ability to pay for medications. These recommendations should be carefully weighed before given to women aging with impairments. CONCLUSION Almost 100 years ago Dr. Wade Frost of the United States Public Health Service wrote, "Few diseases present a more complex problem than does acute anterior poliomyelitis" (Frost, 1911). Frost was aware that the disease challenged neurologists, biologists, orthopedic surgeons, pediatricians, pathologists, and epidemiologists. Today, the disease baffles more people than those who endeavored to cure the disease during the first half of this century. Polio has become a concern for nurses, physicians, gerontologists, social workers, public policy makers, and all those who care about how our population ages because no society can afford to neglect those who were affected by any disease regardless of its immediate threat to current or future generations. Today, the problem is not how to cure polio but how to support persons with impairments over the life course. The first step in this process is to understand what their experiences have been through the years and what they mean today because the women bring these 247 experiences forward as a basis for their interactions today. How we understand and care for those who age in ways not predicated by past experience puts our humanity to the test (de Beauvoir, 1970/1996). This study was a step in the understanding of aging for women with childhood onset disabilities. This study offers the reader an understanding of aging with disability not previously provided in the literature. This hermeneutic phenomenological study was presented as an analysis of the life course experiences of aging as reported by 25 women aging since childhood with impairments due to paralytic polio. The findings indicate that adaptation to the changes associated with aging were dependent upon the women's ability to find synchrony between perceptions of self and their ability to act on their own behalf. Perceptions of age did influence their reaction and the perceived reaction of others to their impairments. The women pushed themselves to achieve within the roles they perceived as salient to their lives. The women viewed their impairments as part of the self not a disease or illness and aging was an embodied, individualized experience of slowing down. They viewed aging as a journey that changed them in form, perception, and ability. Future studies are needed of women with other types of life long impairments and women from various cultural groups. This study could also be repeated in a group of men. Healthcare policy makers should consider integrating recommendations for women aging with disabilities within all women's health guidelines. 248 APPENDICES 249 Appendix A: Review Board Materials 250 INSTITUTIONAL REVIEW BOARD APPROVAL 251 INFORMED CONSENT TO PARTICIPATE IN RESEARCH School of Nursing The University of Texas at Austin You are being asked to participate in a research study. This form provides you with information about the study. The Principal Investigator (the person in charge of this study) or her representative will describe the study to you and answer all of your questions. Please read the information below and ask questions about anything you do not understand. Your participation in this study is voluntary and you can refuse to participate without penalty or loss of benefits to which you are otherwise entitled. Title of Research Study: Aging Among Women with Disabilities Principal Investigator: Tracie C. Harrison, MSN, RN, FNP Doctoral Candidate The University of Texas at Austin School of Nursing 1700 Red River Austin, TX 78701 512-898-5573 (home phone) 512-471-9077 (office phone) 512-964-0335 (cellular phone) Funding sources: John A. Hartford Building Academic Capacity, American Academy of Nurses, and the University of Texas Harrington Dissertation Fellowship What is the purpose of this study? The purpose of this study is to understand the experience of aging for women who experienced paralytic polio at or before age 13. If you agree to participate, you will be one of 15 to 45 women age 55 to 65 who will be interviewed at least three times about the experiences they have had with aging. I am also interviewing two 252 women age 45 to 54 and two women 66 to 75 to highlight experiences of the cohort under investigation. What will be done if you take part in this study? If you agree to take part in this study, I will ask you to complete two forms about your back ground, such as marital status, age, and number of children; as well as questions about the effect polio had on your body. This will be mailed to you prior to the first study and will take approximately 15 minutes to complete. Then I will interview you at least three to five times about how you experienced changes in your life and body as you aged. Each interview will take approximately 1 hour but may take up to 2 hours depending upon how much information you would like to share. I will audiotape your answers and make notes about your responses. This will take up a total of 4 to 10 hours of your time over approximately 6 to 10 weeks. What are the possible discomforts and risks? There are no major risks to this study. There is the possibility that some of the questions may cause you to recall events that will cause emotional distress. You need not answer any questions that you wish to avoid. If you feel that you need help after the interview dealing with any issues, I will tell you about places you can contact for help. What are the possible benefits to you or others? You will receive $10.00 per interview as compensation for your time. There will be 3 to 5 interviews; therefore the compensation will be no more than $50.00. Some people also get psychological benefit from discussing their experiences. Little is known about the experience of aging after impairment in childhood, so your experiences may offer new and different perspectives that will be of use to health professionals and students. If you choose to take part in this study, will it cost you anything? There will be no costs to you for participation in this study. Will you receive compensation for your participation in this study? You will receive $10.00 per interview as compensation for your time. There will be 3 to 5 interviews; therefore, the compensation will be no more than $50.00. 253 What if you are injured because of this study? While the risk of injury is low, no treatment will be provided for research-related injury, and no payment can be provided in the event of a medical problem. If you do not want to take part in this study, what other options are available to you? Participation in this study is entirely voluntary. You are free to refuse to be in the study and your refusal will not influence current or future relationship with the University of Texas at Austin or the Texas Polio Survivors Association. How can you withdraw from this research study and who should I call if I have questions? If you wish to stop participation in this study for any reason, simply tell me and I will end the interview immediately and leave. You are free to withdraw your consent and stop at any time without penalty or loss. If you wish to stop your participation in this research study for any reason, you should contact: Tracie Culp Harrison at (512) 898-5573. You are free to withdraw your consent and stop participation in this research study at any time without penalty or loss of benefits for which you may be entitled. Throughout the study, the researchers will notify you of new information that may become available and that might affect your decision to remain in the study. In addition, if you have questions about your rights as a research participant, please contact Clarke A. Burnham, PhD, Chair, The University of Texas at Austin Institutional Review Board for the Protection of Human Subjects, 512-232-4383. You may also contact my dissertation supervisors of this study, Alexa Stuifbergen, PhD, RN, FAAN and David L. Kahn, PhD, RN at 512-471-7311. How will your privacy and the confidentiality of your research records be protected? 254 The data collected in this study will consist of the audiotapes of your interview. These tapes will be typed into a written document that outlines what you said in your exact words. A false name will be used on both the tapes and the written document. The tapes and the written document will be kept in a locked file to which only the dissertation supervisors or I will have access. Your actual name will never appear in the data or be used in anything I write about this study. The tapes will be destroyed when the study is completed. I will pull the tape out of the cassettes, cut them into pieces and dispose of them in the trash. Authorized persons from the University of Texas at Austin and the Institutional Review Board have a legal right to review your research records and will protect the confidentiality of those records to the extent permitted by law. If the research protect is sponsored then the sponsor also has the legal right to review your research records. Otherwise, your research records will not be released without your consent unless required by law or a court order. If the result s of this research are published or presented at scientific meetings, your identity will not be disclosed. Will the researcher benefit from your participation in this study? The researcher will not benefit from your participation in this study. Signatures: As a representative of this study, I have explained the purpose, the procedures, the benefits, and the risks that are involved in this research study: Signature and printed name of person obtaining consent Date You have been informed about this study's purpose, procedures, possible benefits and risks, and you have received a copy of this form. You have been given the opportunity to ask questions before you sign, and you have been told that you can ask other questions at any time. You voluntarily agree to participate in this study. By signing this form, you are not waiving any of your legal rights. 255 Signature and printed name of participant Date Signature of Principal Investigator Date 256 FLYER SENT TO POTENTIAL PARTICIPANTS 257 CARD SENT TO POTENTIAL PARTICIPANTS 258 LETTER SENT TO INTERESTED PARTICIPANT August 10, 2004 XXX Dear Ms. XXX, Thank you for agreeing to participate in my study of women aging with childhood onset polio. As we discussed, I hope to gain an understanding of the experiences you have had with aging. This means that I will be asking you about changes you have experienced since your exposure to polio as a child. To help understand what has happened over the years, I have included a life course review chart. The chart is to help you recall things that have been of importance to you. I ask that you take a few minutes to complete the chart before I arrive. We will spend some time talking about what you wrote at our meeting. The instructions for completing the chart are included. I have also included my phone number, email, and mailing address. If you have any questions, let me know. I look forward to our meeting. Sincerely, Tracie Culp Harrison Doctoral Candidate School of Nursing, the University of Texas at Austin 259 Appendix B: Data Collection Instruments 260 INTERVIEW QUESTIONS Interview One: I find the best way to learn about how you have experienced the changes associated with aging is to start from the beginning. You may want to refer to the chart you completed before I arrived. It can help to remind you of events or experiences that were important to you over your life. At times I may ask you for further detail about certain things you mention. It is up to you to tell me as much as you feel comfortable with. Right now, I want to focus on the significant changes that have occurred in your relationships over time, but also those things that have influenced those relationships. So let's start back when you were a kid and what your relationships were like with parents, siblings and friends. Tell me what those relationships meant to you and how they affected you over time. Sometimes it helps to tell me a story about a significant relationship as an example. Then we can work forward to today. Interview Two: 261 Last time we spoke, we talked about your relationships and how those changed over your life. Is there anything you would like to add that you didn't talk about last time? Again, you may want to refer to the chart you completed. Today I want to focus on the significant changes that have occurred in you and your ability to do the things you want. So, let's start back when you were a kid and what type of activities you engaged in and how you were able to do those things. Tell me what those changes meant to you? Sometimes it helps to tell me a specific story that describes how the changes affected you or to show me pictures of how things have changed. From there we can work forward to today. Interview Three: Last time we spoke, we talked about you and how you have changed in your abilities to perform certain activities. Is there anything you would like to add that you didn't talk about last time? You may want to refer to the chart you completed before the first interview. Today I want to focus on how you feel society has changed around you and how that has affected you as a woman. Yet again, I want 262 to start back when you were a girl. Do you recall what it was like to be a girl with a disability and what types of opportunities that were offered to you? Again, you may want to tell a story of what it was like to be a girl who had polio or show me pictures that you can describe. From there we can work forward to today. Right now I would like you to think about what aging means to you. Now, think back over your life. Was there ever a time when you felt aware that you had aged? Please tell me about this time in your life. 263 DEMOGRAPHICS 1. How old are you? ________________________________________________________ 2. What is your marital status? _________________________________________________________ 3. Do you have children? If so, how many? __________________________________________________________ 4. What is the highest educational degree that you have completed? ____________________________________________________________ ____________________________________________________________ 5. What is your employment status? ____________________________________________________________ 6. How many hours a week do you work? ____________________________________________________________ 7. What type of work do you do? ____________________________________________________________ 8. What is your ethnicity? ____________________________________________________________ 9. How old were you when you contracted polio? ____________________________________________________________ 264 10. What year did you contract polio? ____________________________________________________________ 11. How long were you hospitalized when you had polio?_______________________________________________________ 12. What type of polio did you have? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ 13. What part of your body was affected by polio during the first month of your illness? ____________________________________________________________ ____________________________________________________________ 14. How was your body affected by polio during the first month of your illness? ____________________________________________________________ ____________________________________________________________ 15. Has a physician diagnosed you with Post Polio Syndrome? ___________________________________________________________ ____________________________________________________________ ____________________________________________________________ 265 16. Are you currently using any assistive devices? If so, what kind? ____________________________________________________________ ____________________________________________________________ 17. Do you have any health problems that require you see a physician or take medications on a regular basis? If so, what is that condition(s)? ____________________________________________________________ ____________________________________________________________ 266 LIFE COURSE REVIEW CHART Life Course Review Instructions Identify the top area of the chart that has different events written across it. These events are social changes that may have affected you. Circle any event that you found very significant in your life. Identify the area of the chart just below the social events that you circled. You may write in any event that was significant to you that were left off of the top of the chart. This can be any social event in your community or larger world that you wish to recognize. Identify the area of the chart that is light gray. This is the life course events area of the chart. The higher you mark something in the light gray area the more significant it is to you. The lower you mark something the less significant it is to you. Now fill in the chart with events that have occurred in your life that you feel are worth talking about or mentioning. Place the events that are very significant high in the gray box and place those that are less significant lower in the gray box. (See the example for more information, but you 267 decide what is worth mentioning. What you think is significant is the point of this chart). Identify the area of the chart along the bottom marked `your age'. 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A., Howland, C., Chanpong, G., & Rintala, D. (1997). Prevalence of abuse of women with physical disabilities. Archives of Physical Medicine and Rehabilitation, 78, S-34-S38. 302 Vita Tracie Culp Harrison was born in Taylor, Texas USA on January 24, 1968 to Donald and Linda Culp. She attended Thorndale High School and graduated in 1986. Afterwards, she gained her Bachelor of Science in Nursing at The University of Texas at Austin. She gained her Master of Science in Nursing at Texas A&M, Corpus Christi where she was certified as a family nurse practitioner. She has worked as an intensive care nurse for 5 years, family nurse practitioner for 2 years, and a graduate research assistant for 5 years. During the past 5 years as a graduate student, she authored or co-authored 15 peer reviewed publications on aging, disability, and/or chronic illness. Permanent address: P.O. Box 344 Thorndale, TX 76577 This dissertation was typed by the author. 303

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