Taylorfull1

Taylorfull1 - 29 “YOU’RE NOT A RETARD YOU’RE JUST...

Info iconThis preview shows pages 1–8. Sign up to view the full content.

View Full Document Right Arrow Icon
Background image of page 1

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 2
Background image of page 3

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 4
Background image of page 5

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 6
Background image of page 7

Info iconThis preview has intentionally blurred sections. Sign up to view the full version.

View Full DocumentRight Arrow Icon
Background image of page 8
This is the end of the preview. Sign up to access the rest of the document.

Unformatted text preview: 29 “YOU’RE NOT A RETARD, YOU’RE JUST WISE” STEVEN J. TAYLOR This is a study of the social meaning of disability and construction of social identity in a family 1 will refer to as the Dukes. The immediate family consists of four members—Bill and Winnie and their two children, Sammy and Cindy—but has grown since I started my study to include Cindy’s husband and her four young children. The Dukes are part of a much larger network of extended fam— ily members and friends. I have been following the Duke family and many of its kin and friends for the past ten years. . . . Bill, Winnie, and their two children have all been diagnosed as mentally re— tarded or disabled by schools and human service agencies. and a sizeable number of their kin and friends have been similarly diagnosed. From a sociological or anthropological per- spective, disability can be viewed as a social con struct (Whyte and lugstad 1995). Like other forms of social deviance, what we call disabilities—mental retardation, mental illness, Alzheimer’s disease, blindness, deafness, mobility impairments—«are not objective conditions but concepts that exist in the minds of people who attach those labels to others (Bogdan and Taylor 1994; Davis 1997; Gubrium 1986; Langness and Levine 1986; Mer- cer 1973; Murphy 1990). Disability can serve as a master status (Becker 1963; Schur 1971) and can carry with it a stigma. A stigma is not merely a difference but a charac- teristic that deeply discredits a person’s moral character (Bogdan and Taylor 1994: Goffman 1963; Langness and Levine 1986; Link et aL [997). Numerous studies have demonstrated how people with disabilities are stigmatized and re- jected by society. . . . THE DUKE FAMILY Bill and Winnie Duke live just outside of Central City, a medium-size city in the Northeast. Bill and Winnie have lived in and around Central City since they were married more than twenty—five years ago. Bill Bill, age fifty, describes himself as a “graduate of Empire State School,“ a state institution originally fOunded in 1894 as “Empire State Custodial Asy- lum for Unteachable Idiots.“ Born in a small rural community outside of Capital City. Bill was placed at the institution as an adolescent. Bill was placed on “probation” and lived for a period of time in a halfway house in Central City. approximately 150 miles from his family’s home. He was officially discharged from the institution in 1971. Bill is on disability and receives government Social Security and Supplemental Security In— come {SSD benefits. Shortly after his release from Source: Sleven J. Taylor, “ ‘You're Not a Retard, You‘re Just Wise,‘ “ Journal of Contemporary Ethnography, vol. 29 (February 2000). pp. 58—92. 29 TAYLOR “YOU‘RE NOT A RETARD, YOU’RE JUST WISE“ 139 the institution, he held several short—term jobs but has not worked in a regular, tax-paying job since the mid—19705. Winnie Winnie, age forty-eight, runs the household, man- ages the family’s finances, and negotiates relations with schools, government programs, and human service workers. Winnie acts very much like a typ— ical wife and mother and performs the work asso- ciated with women in American families (DeVanlt 1991). Winnie was born and raised in Central City. She dropped out of school early to help raise her brother and stepbrothers and sisters, but she can read well and prides herself both on her memory and math skills. Winnie has a speech impediment, which makes her very difficult to understand until one has known her for a while. She also has a host of medical problems. By her account, she had con- vulsions until she was nine years old and has arthritis, heart problems, and a Clubfoot. When I first met the Dukes, Winnie was on public assistance or welfare but was subsequently deemed eligible for SSI. She also previously re- ceived spouse’s benefits from Bill’s Social Secu— rity. She is eligible for vocational rehabilitation because she has “a disability which results in a substantial handicap to employment,” according to her Individual Written Rehabilitation Plan, and she has participated in numerous job-training pro- grams. She has worked twice at a large sheltered workshop for the disabled, Federated Industries Of Central City. She took these jobs under the threat of losing her welfare benefits. Her last Placement there in the early 1990s ended when Federated ran out of work and laid off most of its clients. Sammy Sammy. age twenty-seven, was born with cerebral Palsy. Which is not currently noticeable, a cleft palate, and heart problems. According to Winnie, he has had more than ninety operations for hear— ing, heart, and other problems. As an infant, he had a tracheotomy and was fed through a tube in his stomach. Winnie proudly recalls how she learned to handle his tracheotomy. Sammy has a severe speech impediment and is extremely diffi- cult to understand when he talks. Sammy dropped out of school at age sixteen. He was enrolled in a special education program for students with multiple disabilities, and specif— ically mental retardation and hearing impairments. He receives SSI. Winnie is the representative payee for Sammy’s 351', that is, Sammy’s check comes in Winnie‘s name, and she must periodi- cally report how the funds are spent. Sammy has never held a regular job, although he worked for a very brief period of time at a garage where his father worked for a month or so “under the table.” Since reaching adulthood, Sammy has lived off and on with his parents, one of his other rela- tives, or one of his “girlfriends.” Whether or not he is living with Winnie and Bill, be has frequent contact with them. Sammy currently lives with his parents, although he says that he is looking for an apartment of his own. Cindy Cindy, age twenty-three, has epilepsy and receives SSI. Prior to dropping out of school at age seven- teen, she was enrolled in an intensive special edu- cation class, and her federally mandated individual Education Plan HEP) indicated that she is “men- tally retarded—mild” Both Bill and Winnie were proud of how Cindy was doing in school and dis- appointed when she dropped out. One summer, while she was in high school, Cindy was placed at the Federated Industries shel- tered workshop as part of a job-training program. Through her school program, she had volunteer job placements at fast food restaurants and a human service agency. Cindy speaks very clearly but seems to have difficulty reading. Cindy has always been shy _....... . . . r _ — u _ u . . . . a v _.._... 190 PART seven VICTIMS or srtoMA among strangers but is becoming less so as she grows older. Since I started studying the Duke family, Cindy has changed from a girl to a young aduit, wife, and mother. When Cindy was about seven- teen, Bill and Winnie started to worry that she was becoming sexually active. Their fears were not unfounded. She became pregnant, broke up with her boyfriend, and then married a 26—year- old man, Vinnie, shortly afterward. Cindy’s first baby, Mikey, was born in spring, 1993, and she has since had three additional babies. After the birth of her last child, Cindy agreed to be ster- ilized. Cindy and Vinnie’s four children, all boys, are enrolled in an early intervention special edu- cation program. Social Relations among Kin and Friends Bill and Winnie not only come from sizeable ex- tended families but also have a large and ever- expanding network of friends and acquaintances. The Dukes make friends easily and bring friends of friends, family of friends, and friends of family into their immediate social network. Social relations within the Duke network are characterized by mutual support, on one hand, and arguments and feuds,.on the other. . . . [T]he Dukes and their kin and friends depend on each other for help and assistance; mutual support networks are a means of coping with their mar- ginal economic and social status. The Dukes as well as their relatives and friends take in home- less family members and friends, lend people food or money, and help each other out in other ways. People within the Dukes’s network also regu- larly complain about and argue with each outer or become embroiled in all-out feuds. At any point in time, someone in the network is fighting with someone else. Hardly a month goes by when Bill and Winnie are not involved in a dispute with rel- atives or friends. Once an argument begins, other family members and friends are likely to be drawn into it. Feuds can be emotionally charged and vehe. meat but seldom last long. People can be bitter an- emies one day and friendly to each ether the next. For example, when I first met the Dukes, Lisa and Gary and their three children were staying with them since they were homeless. Bill and Winnie grew tired of Lisa and Gary and threw them out of their house. Within months, however, Lisa and Gary were once again close friends of the Dukes and frequent visitors to their home. THE STUDY When I first heard about the Duke family, I was interested in meeting them. Cindy’s family sup- port worker, Mary, had casually told me about the family and how each member had a disability. In particular, Bill’s reported description of him- self as a “graduate of Empire State School” fas- cinated me. My dissertation was based on an ethnographic study of a ward at Empire State School (Taylor 1977, l987), and I had previously conducted life histories with former residents of Empire (Bogdan and Taylor 1976, 1994). Every- thing I knew based on my previous research led me to believe that people would avoid volunteerv ing information about having lived at an institu~ tion for the mentally retarded. The longer this study has gone on, the more I have appreciated Gubrium and Hoistein’s (199D) notion of “listen— ing in order to see.” Mary regularly collected used clothes, old appliances, and household items for the Dukes. 1 had an old portable TV and some electric heaters and asked Mary if she would arrange for me to drop them off at the Dukes. She agreed to do so, and I met the Duke family in February 1989. l have been studying the Dukes ever since that time. From 1989 to the beginning of 1992, I recorded approximately 100 sets of field notes comprising more than 1,200 pages. Since that time, although visiting the Dukes less frequently, I have continued to maintain regular contact with them. In recent years, I have visited them four or -.'_;.-__—,,—— .,-.___._ lilliili 29 TAYLOR “YOU'RE NOT A RETARD, YOU‘RE JUST WISE“ 191 five times a year and speak with them on the phone monthly, if not more often. DISABILITY LABELS AND FAMILY CONSTRUCTIONS Although Bill, Whittle, Sammy, and Cindy, as well as many of their kin and friends, have been labeled as disabled or might be considered disreputable in other ways, they do not attach the same meanings to disability labels as found in the broader society. Within the Duke family and to a large extent within their broader social network, disability labels are interpreted in nonstigmatizing ways. They are largely successful in insulating themselves from the messages received from programs, agencies, and schools . . .that they are handicapped, dis- abled, mentally retarded, and incompetent. The disability labels of Bill, Winnie, Sammy, and Cindy are listed on plans, forms, and corre- spondence the family receives. Mentally retarded, disabled, and handicapped appear frequently on government paperwork; teachers and government officials have referred to Cindy’s and Sammy’s “mental problems” and “mental retardation” in discussions with Winnie. Their labels are not a matter of things said behind their backs but are thrown to their faces. Yet, the Dukes, along with their friends and kin, attach social meanings to such labels that leave their social identities unscathed. [In the Dukes’s own opinion. they have only medical problems. As Winnie said]: Cindy has medical problems. She has epileptic seizures. . . . Sammy had medical problems when he was born. Bill has medical problems. He has seizures. And I have medical problems. We all have medical prob- lems.” Winnie explained that she and Bill were aware of each other‘s problems when they got married. . . . Having medical problems is not something to conceal or to be ashamed of. Winnie volunteers this information to outsiders making their first vis- its to the home. Medical problems seems to repre— sent a nonstigmatizing way of interpreting the messages received from the outside world. In the same way that a person‘s identity is not affected by having high blood pressure, allergies. or high cholesterol, the construct of medical problems avoids stains on a person‘s moral character. Institutionalization As Edgerton (1993) notes, institutionalization is itself stigmatizing and a biographical fact that peo- ple with mental retardation try to hide. The “cure” (being institutionalized} is worse than the “dis— ease” (having an intellectual deficit). When Bill discusses his institutional experi- ence, he talks as though Empire State School were a reform school rather than an institution for the mentally retarded. According to Bill, Empire helped him “get my head together," and he is proud that he worked his way off “probation.” Bill described his history: I was in Empire State School before I was married. I don’t mind talking about that, I 'm proud of it. I was there twenty-two years. Now I’m celebrating my eighteenth anniversary. I have a nice family, and l ’m doing okay. On another occasion, Bill commented that it would “straighten out” Sammy and Cindy if they were sent to institutions. Bill points to Sannny: Now it’s too bad theyr don’t have places like Em- pire today. I'll tell you, if you went to Empire, you wouldn ’t have the problems you have. I’ll tell you. It was hard. You had to work hard scrubbing the floors. Then if you did something, they beat you with a stick or put your head in the toilet. Retard, Retarded, Moron, Crazy, Weird, Dumb, and Stupid As in other parts of society, retard, retarded. moron, crazy, weird, dumb, and stupid are used as general epithets and do not necessarily refer to in— tellectual deficits. People casually call each other these names. Bill often calls Sammy and Cindy “stupid” and “dumb” when they avoid doing 192 PART seven worms 0F STIGMA something he has told them to do or when they ir— ritate him. Bill turns the TV from a program to the VCR. Sammy complains, “Don’t turn that. I’m watching it.” Bill replies, “Stupid, that’s almost over.” Cindy says something about riding Sam- my’s bike. Bill says, angrily, “Stupid, there‘s bikes downstairs. Get one of them." When he is angry with family or friends, he also refers to them as “stupid.” Both Bill and Winnie characterize his family as “crazy” and “weird.” Bill told me the following story: BILL: “I’ll tell you, my family’s crazy. They’re all crazy. How’s your stomach?" ME: “Okay, I guess.” BILL: “I mean, do you have a weak stomach?” ME: “No, go ahead.” BILL: “My sister Pam. . . . Well, she used to make macaroni salad, with cucumbers and everything. It was real good. This one time, I was over at her house, and she asked me if I wanted some macaroni salad, and I said, ‘Sure. Yea.’ Well. She gave me a dish, and I went to take a bite, and I looked down, and there were maggots in it. I said, ‘Pam, there’s maggots in there!’ She took the macaroni and ate it, maggots and all. I’ll tell you. She’s crazy." Although Bil] often calls Sammy and Cindy “dumb” and “stupid,” both he and Winnie also communicate to their children that they are not mentally deficient. Bill proudly showed me a TV on which Sammy had worked. Everybody says Sammy 's dumb, right? They all say he is dumb. Want to see something? {Bill points to a TV in Sammy’s room.) Ifound that in the trash and brought it home. Sammy took the tube out and put another one in itfrom another TV! had. (Bill toms on the TV) Look at that. Everybody says he ’s sm- pt‘a‘, but look at that. He ’5 not dumb. The title of this article is a quote from Bill. One day when I was visiting the home, Bill was prodding Cindy to sweep the floor. Avoiding the job, Cindy would sweep for a minute or two and then sit down. After being scolded repeatedly by Bill, she laughed and said, “I’m a retard.” This is when Bill said, “You're not a retard, you’re just wisa.” Cindy responded, “I’ll be a retard if I don’t do my homework.” Bill‘s casual response, “You’re not a retard, you‘re just wise,” redefined her behavior in terms of being a smart alec and, hence, was normalizing. However, this exchange and other instances when Cindy called herself “stupid” indicate that she was aware of how she had been labeled at school, and this was prob- lematic for her. The Dukes simply do not internalize disabil- ity labels as a master status and, for this reason, avoid the stigma and spoiled identities associated with them. They do not attempt to pass as normal; they see themselves as normal. SOCIAL IDENTITHES The Dukes’s kin and friends can be identified as disabled or disreputable in the context of schools, government programs, and human service agen- cies, but they have untainted identities, or images, within the family and social network. Bill and Winnie describe themselves in terms of their family roles, interests, and skills. For both of them, their family relationships, gender roles, and responsibilities are especially important in the construction of identity. Bill is a husband, father, grandfather, uncle (who is looked up to by some of his nieces and nephews), son, and brother; and Winnie is a wife, mother, grandmother, aunt, daughter. and sister. Bill expresses pride about having a family, and Winnie prides herself on her child—rearing knowledge and skills. Winnie never passes up a chance to give me advice on raising my own children (six and eight years old) and will scold me if she thinks I am doing something wrong. Both Winnie and Bill like to remind me that I am a newlywed compared to them. Their an- niversary, Mother’s Day, and Father’s Day are spe— cial holidays for Bill and Winnie and provide an opportunity to celebrate their status as marriage partners and parents. U iiiiiiiiiiii’iiiiiiii ! I I llllll 29 TAYLOR “YOU‘RE NOT A RETARD, YOU'RE JUST WISE" When it comes to their children, Bill and Winnie have a way of turning labeling and stig- matizing experiences upside down and inside out. Their definitions of their children stand in stark contrast to how they have been defined by schools, government programs, and agencies. Winnie re- ports that Sammy was an “A-l student” prior to dropping out. When I asked what Sammy “wants to be,” Winnie answered, “A mechanic, maybe an artist." When she was a full-time special education student, Cindy received constant reminders of her identity as being disabled or mentally retarded. Her IEP [Individual Educational Plan] mentioned her mental retardation, and Winnie attended what she called “Committee on the Handicapped" meet- ings on her behalf. Everything about Cindy’s school program told her that she was handicapped and mentally retarded. She took a special educa— tion bus to and from school and had always been placed in a self-contained special education class. As her comments “I’m a retard” and “I’m stupid" indicated, Cindy was not oblivious to the mes- sages she received from school, and she had to struggle to maintain an identity as a normal teenager. However, Bill and Winnie constructed an image of Cindy being a normal teenager. Winnie boasted to family members and friends about Cindy‘s school achievements. One year, Cindy was awarded certificates of attendance and merit for participation in her special education program, and Winnie talked about her “making the honor roll." 0n the last day of class that year, Cindy’s teacher gave out class awards. Cindy re— ceived one for “community service" and one for “student council” (three members of her special education class were among the sixty or seventy members of the school’s student council). On the Way home after Cindy’s last day of class, Winnie Commented, “That kid’s bright. She’ll graduate from high school." For many, if not most, parents, marriage and Child rearing would be out of the question for chil— dren with Sammy’s and Cindy’s limitations. For Winnie and Bill, raising a family is regarded as a 193 natural part of growing up for Cindy and Sammy. Both Winnie and Bill are proud grandparents of Cindy‘s four children and expect Sammy to get married soon. CONCLUSION In the Duke family and broader network of ex— tended family members and friends, people with obvious disabilities are not stigmatized, rejected, or necessarily viewed as disabled. Even when peo- ple’s disabilities are recognized, as in the case of the handicapped, these disabilities do not repre- sent a master status that controls interactions with them. That people can maintain positive identities while being subjected to labeling at the hands of government programs, human service agencies, and schools is no easy accomplishment. The Duke family experience shows that small worlds can exist that do not simply reproduce the broader so- cial contexts in which they are embedded. Four related factors seem to account for the Dukes’s ability to avoid the stigma and stained identities associated with disability. First, the fam- ily stands between individual members and pro- grams or agencies and provides a ready set of meanings and interpretations of their experiences. Reiss (1981) describes how families help mem- bers organize their experiences of situations in everyday life. According to Reiss, the family per- mits individuals to “select, highlight, and trans- form essential aspects of their experience and delete the rest” (p. 203). Culture, including the cultural meanings associated with disability and imparted by agencies, is interpreted in the context of the family’s stock of shared knowledge and understandings. Second, in the case of the Dukes, their family life world is shared and reinforced by an extensive network of kin and friends. Their extended social network appears to be much more influential than in the nuclear families described in much of the literature on family worlds (Hess and Handel 1995; Gubrium and Holstein 1990; Reiss 1981). Within the Dukes‘s social network, households are 194 PART SEVEN VICTIMS 0F STIGMA not necessarily identical with nuclear families and often are composed of members of different fam- ilies. Furthermore, households and families within the network have a high degree of contact with one another. Third, related to their roles within a family, none of the Dukes or members of the network are full-time clients of human service agencies. Insti— tutions and community facilities engulf people in a separate subculture that provides them with scarce opportunities to define themselves as any- thing other than disabled (Bercovici I983; Bog- dan and Taylor 1994; Edgerton 1986). Bill’s and Cindy’s experiences are instructive in this regard. For Bill, the passage of time since being institu- tionalized has undoubtedly enabled him to estab lish a positive identity. In a follow-up study of “The Cloak of Competence," Edgerton and Bercovici [1976) found that err-institutional resi- dents‘ concern with stigma and passing became far less evident over time. Of all of the members of the Duke family and perhaps the network, Cindy seemed to struggle the most with an identity as a REFERENCES disabled or retarded person while she was in school. This suggests that the more enmeshed one is in disability programs—in Cindy’s case, fut}- time special education classes—the more one has to contend with a negative identity. Finally, competence is a relative concept (Goode 1994). Although the Dukes and other members of their network may not perform well on standardized tests, in school programs, or in traditional jobs in the mainstream marketplace, they are competent to meet the demands of day to-day life as they experience it. Bill knows not only the best junking routes but also where to sell junk at the best price. Winnie knows where to turn for help when food is scarce. Sammy learned about junk [cars from his father. Cindy was very] aware and competent to function in stores and other settings within her immediate neigthrhood. Literacy and verbal agility are not requisite survival skills in the daily lives of the Dukes and other members of their social network. People within the network, therefore, are not defined based on such characteristics. Becker, H. S. 1963. Outsiders: Studies in the sociology ofdevionce. New York: Free Press. Bercovici, S. M. 1983. Barriers to normalization. Bal— timore: University Park Press. Bogdan. R., and S. J. Taylor. 1976. The judged, not the judges: An insider’s view of mental retardation. American Psychologis.r 31:47—52. . 1994. The social meaning ofmenral retardan lion: Two life stories. New York: Teachers College Press. Davis, L. J. 1997. Constructing normalcy: The bell curve, the novel, and the invention of the disabled body in the nineteenth century. In The disability studies reader; edited by L. J. Davis, 1~28. New York: Routledge. DeVault, M. L. 1991. Feeding the family: The social or- ganization of caring as gendered work. Chicago: University of Chicago Press. Edgerton, R. B. 1986. A case of delabeling: Some prac- tical and theoretical implications. in Culture and re— tardation: The histories of mildly mentally retarded persons in American society, edited by L. L. Lange ness and H. Levine, 101—26. Boston: D. Reidel. . 1993. The cloak of competence revised and up- dated. Berkeley: University of California Press. Edgerton, R. B., and S. Bercovici. 19%. The cloak of competence: Years later. American Journal ofMen— rol Deficiency 80:485—97. Gofl‘man, E. 1963. Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall. Goode, D. 1994. A world without words: The racial construction of children born deaf and blind. Philadelphia: Temple University Press. Gubriurn, J. F. 1986. The social preservation of mind: The Alzheimer’s disease experience. Symbolic la- reroction 9:37—5 l. Gubrium, J. E, and J. A. Holstein. 1990. What is family? Mountain View, CA: Mayfield. Hess, R. D., and G. Handel. 1995. Family worlds.- A psychosocial approach to family life. Lanham, MD: University Press of America. 29 TAYLOR Langness, L. L., and H. G. Levine. 1996. Culture and retardation: Life histories of mildly mentally re— tarded persons in American society. Boston: D. Reidel. Link, B. G., E. L. Struening, M. Rahav. J . C. Phelan, and l... Nuttbrock. 199?. On stigma and its conse— quences: Evidence from a longitudinal study of men with dual diagnoses of mental illness and sub— stance abuse. Jonmal ofHeaitn and Social Behav- ior 38:177—90. Mercer, J. 1973. Labeling the mentally retarded. Berke- ley: University of California Press. Murphy. R. 1990. The body silent. New York: Norton. Reiss, D. 1981. The family’s construction of reality. Cambridge: Harvard University Press. REVIEW QUESTIONS “YOU’RE N01" A RETARD, YOU'RE IUST WISE" 195 Schur, E. M. 1971. Labeling deviant behavior: Its soci— ological implications. New York: Harper & Row. Taylor. S. J. 197?. The custodians: Attendants and their work at state institutions for the mentally retarded. Unpublished doctoral dissertation. . 1987. "They‘re not like you and me”: lnstitu~ tional attendants’ perspectives on residents. Child & Youth Services 8:109n-25. Whyte, S. R.. and B. Ingstad. 1995. Disability and cul- ture: An overview. In Disability and culture, edited by B. Ingstad and S. R. Whyte, 3-32. Berkeley: University of California Press. 1. What are some consequences for a deviant being medically labeled? 2. What does the title “ ‘You‘re Not a Retard, You’re just Wise’ ” tell us abdut the study? ...
View Full Document

Page1 / 8

Taylorfull1 - 29 “YOU’RE NOT A RETARD YOU’RE JUST...

This preview shows document pages 1 - 8. Sign up to view the full document.

View Full Document Right Arrow Icon
Ask a homework question - tutors are online