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class 4_social work practice and disability issues

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Unformatted text preview: CHMPTER is Social Work Piaciice ' and Disiahiliiy issues REBECCA BRASHLER 1511.12.11.1er smooss THE study of health care and the study of diversity Within the social work curriculum. People with disabilities; generally have a greater number of healthware encounters than do people without dis— abilities and therefore have a considerable stake in issues such. as access to med ical care, insurance, quality of care, and the deiivery of health services {Belong :3: Ian, 2001). Disability Studies is a distinct emerging field 1'}?!le embraces the study of humanities, social science, and the history of people with disabilities. ll: is analogous to other diversity topics such as Women’s Studies, African American 3tudies, or lewish Studies. For social workers, the study of disability often fo- cuses on the psychology and the politics of differencem—the stigma associated with those who fall outside the mainstream as well as the benefi‘zs found when differences are embraced and societal barriers are eliminafed. This chapter pro— vides a review of these issues for social workers who provide counseling to indi- viduals with disabilities in a variety of settings. CHAPTER OBIECTIVES B Discuss the challenges faced when attempting to define disabili‘ry. 0 Review disability models and discuss their assumptions as well as their power to influence our perspectives as social workers. fl Provide an overview of conunon challenges social workers encounter when working with clients who have disabilities. 0 Explore societal values regarding difference and disability that influence both personal perspectives and clinical approaches. DEFINING Di SABILITY Disability may be viewed as a personal characteristic, much like blue eyes, brown skin, or curly hairman identifying bu’r not necessarily defining feature. Others 448 ersity rhave .t dis» med— sng (it study . it is irican an to— :iated when r pro- indi- their when JEDCE irown ithers r s t a 'Z Social Work Practice and Disability issues 449 may view disability as a disease or an abnormalitywesomething to be avoided at all costs, something that brings with it hardship, suffering, and stigma. Still oth— ers may view disability as a source of pridekan entree into the rich World of dis— ability culture and a disability community that celebrates difference while empowering people with disabilities to demand their rights. When. discussing disability, examining our perspective becomes critical. This can be challenging, however, since our perspective is always changingminfluenced by our life experi- ences, age, and health, as well as societal norms, historical. context, and our own self-image as disabled or nondisabled persons. To make matters even more complex, there is no universally accepted defini— tion of disability. The Oxford Concise Medical Dictionary defines disability as ”a loss or restriction of functional ability or activity as a result of impairment of the body or mind” (Concise Medical Dictionary, 2002). The Americans with Disabilities Act (ADA) defines a person with a disability as a person who ”meets at least one of the three criteria: (1) havingr a physical or men tal impairment that substantially limits one’s ability to perform one or more major life activities; (2) having a record of such an impairment; or (3) being regarded as having such an impairment” (National Council of Disability, 1997, Appendix F). While the Social Security Administration considers you disabled if. ”you can not do work you did before and we decide that you cannot adjust to other work because oi your medical conditions(s). Your disability also must last or be ex- pected to last for at least a year or to result in death” (Social, Security Publication No. 05-10029, 2003, p. 2). The widely quoted World Health Organization’s (WHO) definition of disability in the international Classification of Impairments, Disabilities and Handicaps (lClDH) distinguishes among the three related concepts of ”impairment,” ”dis ability” and ”handicap.” impairments are defined as ”disturbances of body struc- tures or processes.” A disability ”is any restriction or lack (resulting from an impairment) of ability to perform an. activity in the manner or within the range considered normal for a human being.” And a handicap is ”the social disadvan- tage individuals experience as a result of impairment or disability” (Willi), 1980). This definition was subsequently revised by the World Health Organization’s lClDH-Z Classification which places further emphasis on the role of environmem tal or social factors in ”personal activity limitations” and ”social participation re- strictions.” Because disability identification is so elusive, attempts to count the number of _ people with disabilities in our communities are “subject to methodological bias and the distortion of the cultural lens” (Fujiura & Rutkowski-Kmitta, 2001). The US. Census indicates that 19.3% of the population 5 years and over have some type of disability (US. Census Bureau, 2000). Often people with disabilities are referred to as the nation’s ”largest minority ” or as ”a minority that we all, if we live long enough, join” (Shapiro, 1994-). Some of us may never have a disability Ourselves yet will spend a large portion of our lives caring for and loving a family member with a disability. Disability comes to people at different times; some of us are born with a disability while others acquire one through illness or accident. Many of us will spend most of our time as nondisabled individuals only to expe— rience alterations in our functioning as we enter the final years of our lives. Disabilities can be sorted by impairment type (e.g., mobility impairments, cog- nitive impairments, sensory impairments) or they can be viewed on a continuum 45f! i"i.iiAi.1T‘i-i Swarm... W'ORK: SE2! my [imam-i OF PRAC‘ from mild to moderate to sweat, depending on the iimitaiions they bring. 30mg disabiiiiles am invisi'bie to ('iutsiders while. others are immediateiy nbvimia Com. piex typologies h ave also been deveiaped, such. as; john Rolland’s, which. classify disa bi'iiiziazia acmi‘ding in onset, (mama, ouicome, and incapacity (Rolland, 3994i While {3E iii‘i'iei‘esi to clinicians, most people with disabiliiies seem largely indiiu fei‘ent ti} these siaiissiics, deiinitim‘asi, and ciassii‘icaticm schemezi‘i. What seems to matter 'imiest is Whei‘hei peepie with digabiiiiiezi are Emily li‘ifiiudfld in. schoeis, camiziuniiies, and workpiacei‘s and‘wheihszi‘ they are viewed by Oti‘lEI’S as pegpig with. value. T1163 perspective? that others embrace diraixiatimiiy shapes i'i‘lfi.’ iii-ms 0; pmple with. disabiiities. H l Si ”.5“ {3 R. l C. A 'L. C C} N E" El X T il‘l the. early ninewei'iila aezniuiy, many in. the: WQSiem world viewed disrv " -. disabiiii'y in me. same way that they viewed. Qafiffifi‘ly and. dis‘ias-I'ei‘, are “a ‘viSitaticm (sf-c1 jusi {Sod apart a. lira-iii. and writing pfifi’SOH . , . a dime? 301.1% queries iii {indem- able pearsmnai (3r Somali. behavim” {’i‘m‘rmeir, 1974i). it is no p-ri. mg, given this View, ii'iai peoplfl with disalliliiities \Mfliffifl hiiiimicaily shum'ieci, institutionaiized, a‘riezi feared. What may be Surprising is: how i'hese Same vii-'ewsi, iciii: unitinalienged and fueled by Social 'Dar'winism, led. in the: Eugenia l‘xrii'iwmieni in the. United States. during the. early tweiiiieth {.ezintuivy (Braddock, 2002; Pieifieif, 1999). Ameri— can physicians during {his period mutinely facilitated {the deaths (ii babieg with birth defects; and sterilized iiizatiiiutiiimiiized msidmfia with infireilectiml ciisabili— ties so that their "inferior gangs” would aim: we: en our sonieiy. The. true honor oi the Eugenics; Movemem' became: evidem in Nazi Geiiizzmy during the 1930s and Willis where hundreds; oi- i‘housamdg 03‘ diaa'bied German citizens; were mur— dered after being labeied "unworthy of iife” {Lifiom 1986). This; pmgiam 0i ”sum thanasia" carried out by physicians under the guise of medical}. fireatmem, is often. seen as the pmiude to the mass killings of E‘ews in Gen-ceriti‘aiion camps duriflg World War H. Throughout the twc-zntietli century in. the United Staties, pea-pie with. disabiiiw tiefi, when. not locked away in iarge, pmn‘ly ismdezd insii’tutirms, were. often ex» piniied as cuiiositiasm-mparacied before the. public for amusemefit and profit in. CiI‘CUSESj anti freak shows; éhat remained pop‘uiar well iiitii “the 729505 and 7:96.163 {fimms‘smm 19%}. Given this backcii‘op, the advent of religious and secuiar orgaw izatioris that preseniéid people with disabiiiiies as objects of piiy and deserving of chariiy seemed. ccimparziiively humane. However, the era of telethons and poster—cliiidre‘n offered a View of people with disabilities“, {i‘niy as victims of tragic circumstances. Telethons and. other charity fundaraisem created Sympaihy by manipulating the fears of their viewers in. order to get them to ”ripen their waileia” (Shayim, 'l99ii, p. 13). The viewers’ sense (if vulnerability could in? rem limited by sending money Elisa: would. fund. a. cure fair the usifortumie. childmi'i—- ihe: oniy acceptabie soluticaii—far mareiy Were images {bf disabled. adults shared with the: pu'ijiic. Today, we find ourselves in iimevaiive iimes as {he disabiiity rights movement repiactes the Charity movement and. peopie with disabilities claim theiir right it) equal. opportunities and full participation in Elli aspects; of society {Bickenbeich 2001). Through hard—faughi legislative battles, the grafiwroais independeni living bring. Some )vious. Com- hich classify lland, 1994), argeiy indif- lat seems to l in schoois, rs as people 3 the lives of disease and ”a visitation r of undesin ;, given this utionalized, ichailenged the United 399). Ameri- babies with .ial disabili true horror g the 19305 ; were mur— ram of ”eu~ ant, is often rips during .th disabili- ‘e often ex- ld profit in L and 19605 ular organ- I deserving athons and victims of l sympathy ’open their Duld be re— Children—— ilts shared movement air right to ickenbach, dent living g Social Work Practice and Disability Issues 45} mavement, and individual efforts to change attitudes, the prevailing view of peo— pie with disabilities has changed dramatically in recent years. People with dis- abilities, previously seen as ”the embodiment of misery and lost opportunity,” new claim pride in their identities, willingly embrace a disability subculture and force us to question our preconceived ideas of capacity and value (Trent, 2000}. These changing views of disability challenge sociai workers and other mental health professionals to reevaluate their roles and reassess traditional thoughts about treatment. DISABILITY MODELS Theoretical modeis are used to help us better understand complex concepts and are therefore tremendously heipiui in examining disability. A number of models are used to understand the effects of disability on individuals and groups and therefore on how it is treated. Ti-{E MEDICAL MODEL The medical model of treatment can be illustrated by following a person who wakes up with acute abdominal pain. The person may head. for the emergency room where she becomes a ”patient"wsomeone in need of care from an expert medical professional. The transformation from "person” to ”patient” during hos- pital. admissions was described by Goffman in his study of institutions as a ”leav- ing off and a taking on, with the midpoint marked by physical nakedness” (Goffman, 1961, p. 18). The physician completes an assessment, usually consisting of a physical exam and history taking, sometimes augmented by further tests in order to determine the ”problem" or “pathology.” The physician then arrives at a “diagnosis,” which in turn leads to a course of "treatment” or ”intervention.” Often during the intervention phase, the patient is asked to give up a fair amount of autonomy and control to heaith-care professionals. This is easily seen in the pa- tient hospitaiized for an appendectorn , who is instructed on what to eat, what to wear, when to get out of bed, and when to interact with visitors. in the best sce- nario, the treatment leads to a "cure” or a resolution of the problem, returning the ”patient” back into a person without pain or dysfunction. In the case of abdomi- nal pain diagnosed as appendicitis and leading to an appendectomy, the medical mode} seems to provide a satisfactory process for delivering care. However, for individuals with chronic illnesses and disabilities, the medical model holds some troubling challenges. First and foremost the diagnosis of a Chronic or permanent conditionwmone not amenable to curemseems to trap the in- dividual. in the ”patient" or "sick" role forever. As a perpetual “patient," people with disabilities may never be well and are forever stuck in a position of reduced status and power. Furthermore, because the intervention phase is prolonged for months or years, the person with a chronic illness or disability is asked to give up autonomy to the “expert” health~care professional for an undetermined period—- a position that may foster feelings of dependency and helpiessness. Aiso, the fail- ure of the person with a chronic illness or disability to be cured—a failure to be ”a good patient”woften elicits unexpected and negative reactions from their physicians and caregivers. Heaith—care professionals confronted by patients who 452 HEALTH EocrAL WORK: SELECTED AREAS o2: PRAChCi‘: cannot be cured may become disheartened and retreat; behind an in‘lpersoual technical approach (lilalpern, 2081). Professiooais may also abandon incurable pa- tients in order to protect themselves from feelings of failure and. vulnerability and move on to treat others who are more likely to have successful outcomes (Cans, €983; Gunther, 1994.). The diagnostic phase of the medical model also holds some troohlifig risky, for people with disabilities. Diagnostic labels and words used to describe people with disabilities have often served to stigmatize them. {People with disabilities are "fie-forfeited, diseased, dis—ordered, abnormal, and most telling of all .. . iii—valid” { Zola, 1982, p. 206:]. D.iagm‘>ses such as “in-ahecile,” "moron,” and ”Mongoloid idiot" were historically used to describe people with cognitive j m1 pairmerits. The solhtulfilling prophecy and low expectations associated with some diagooses encouraged. lnstitotionalizetion for many people who would later prove capable oi: living successfully iii. the comrmmity. it is critical to note that the desire for differential. diagnoses schemes and classification systems tor physical or mental disease has. never been driven by patient needs. The goal of these diagoiostic manuals is to “coable clinicians and investigators to diagnose, communicate about, study, and treat people with various lII‘aEEE‘llc’lll disorders” (American Psychiatric Association, 1994:). The DSM' introduction, for example, cautions. readers that it is not a "classification of people,” but a ”classificatioo of disorders that people have" While this distinctiori is an. important true, it offers no assurance that clinicians and others will not view the individual. differently once their label. or diagnosis has been deter-ironed. The labeling process appears to he inevitably stigmatizing and in the case of chronic illness and disability, the stigma it creates may last a lifetime. lit the medical model, disability resides Within the individual. it assumes that there is something ”wrong” with the person. People with. disabilities are "cle- viant” or ”aboormai.”'They may be missing body parts, lacking in. function, on- able to perform typical tasks and iiicapable of going through life like their able-bodied. peers. This model focuses exclusively on the pathology and some would argue reduces the person to a laundry list of ailments while ignoring their value and humanity. REE-MEIMTA‘FION AND Biopsvcoosocmr lVlODELS The field. of rehabilitation medicine evolved in the mid-19005 and adopted a mul- tidisciplinary team approach to the treatment of people with disabilities with physical therapists, occupational. therapists, speech pathologists, social. workers, vocational counselors, and psychologists joining physicians and. nurses to treat people with disabilities (Albrecht, 1992), Rehabilitation professionals realized that the medical model did not necessarily fit the oeeds of their petiehts and began to ask if "in chronic iliness and disability, is it. the professional who treats the illness or is it the patient (or the patient and his family) who actually carries out the routine treatment day after day?“ (Anderson, 1975, p, 19). The rehaliilitw {ion model of treatment acknowledges that the patient is not a passive recipient of care but an active remember of his or her treatment team and. that the goal of reha~ hilitation is not co re but restoration of the best possible physical and psychologl~ cal functioning. Furthermore, in rehabilitation medicine there was a. distinct shift from focusing solely on the individual with a disability to focusing on. the ipersonal irable pa- ierability outcomes ing risks as people sabilities 71g of all on," and iitive imk ited with to would ii to note stems for ie goal of diagnose, isorders" example, ication of i, it offers ifferently 3 appears lisability, unes that i are “de— :tion, un- like their met some ring their ed a mul— ties with workers, 5 to treat realized. lents and rho treats ly carries ehabilita— cipient of l of reha— ychologiw 1 distinct 1g on the Social Work Practice and Disability issues 453 individual, the family, and the comm unity in which that individual resided. Re— habilitation in this sense embraced the biopsychosocial model of health care (Engel, 1977). The biopsychosocial model expanded thinking beyond the narrow confines of bodily pathology and greatly shifted the focus to psychological and family issues. However, this shift in focus sometimes led to a tendency to pathologize patients’ psychological makemup along with their bodies. It is not difficult to find literature that promotes the belief that physical disability invariably inflicts horribly dis— ruptive and negative psychological Consequences and leads to a whole host of pen sonality disorders. A review of the literature, for example, reveals that patients with arthritis: have been. said to have weak egos, to repress hostility, to be compliant and sub— servient, to be potentially psychotic, to be depressed, dependent, conscientious, masochistic, emotionally labile, compulsive, introverted, conservative, perfection~ istic, moody, nervous, worried, tense, overconcerned about personal appearance, and prone to express psychowpathology in physical symptoms (Shontz, 1970, p. 112) The mind-set among many mental health professionals for years seemed. to be that pathological bodies led to pathological personalitiesm-and they set out to an— alyze the "disabled personality” in spite of having limited research data to back up their assumptions. Far from freeing patients from the stigma of labels, early applications of the biopsychosocial model may have added to the stigma of dis ability by labeiing patients first physically and then psychologically. Relativesmparticularly mothersmwof individuals with disabilities also found themselves being labeled and diagnosed as the focus of treatment widened. to en- compass the entire family system. The classic example of this phenomenon may be Bruno Bettleheim’s theory, later disputed, that autism was actually a psycho~ logical disturbance arising from cold and detached mothering (Bettleheim, 1967). Others wrote about “narcissistic mothers” of children with asthma who were unable to be ”consistently giving,” or of the ”overprotective mothers” of hemo- philiacs whose denial and guilt feelings were “manifested in severe, undisguised anxiety” (Travis, 1976)....
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