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The politics of intellectual diability Matysiak, Bettina M. 1998

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THE POLITICS OF INTELLECTUAL DISABILITY by Bettina M. Matysiak B. S. W., The. University of British Columbia, 1986  A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES (School of Social Work).  We-accept this thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA  July 1998  © Bettina M. Matysiak, 1998  In  presenting  degree freely  at  this  the  thesis  in  partial  fulfilment  of  University  of  British  Columbia,  I agree  available for  copying  of  department publication  this or of  reference and study.  thesis by  this  for  his thesis  scholarly  or for  her  I further  purposes  Department of  p \ g ) l i Cuts  The University of British Vancouver, Canada  Date  DE-6 (2/88)  l i J S r K  Columbia  An 4 fa  that  be  It  gain shall not  permission.  requirements  agree  may  representatives.  financial  the  that  the  Library  permission  granted  is  by  understood be  for  allowed  an  advanced  shall make for  the that  without  it  extensive  head  of  my  copying  or  my  written  Abstract: There  is  movement  a  growing  that  describing  perception  traditional  disability  disabilities.  The  in  ways  serve  emerging  the  of  to  disability  thinking oppress  social  rights  about  and  people  theory  with. / disability  of  attempts to describe the social constructedness of disability and views disability from a rights perspective.  Informed by  this theory and in an effort to give voice to people with intellectual  disabilities,  intellectually experiences  of  conducted. research, members  disabled life  a  self  with  qualitative advocates  an  to  intellectual  study  asking  describe  their  disability  was  Based on the findings of preliminary focus group individual  of  transcribed  that and  Participants  interviews  group.  analyzed  discussed  The  were  interviews  following their  conducted  a  with  four  were  recorded,  narrative  technique.  experiences  and  issues of importance. These issues included  identified  dissatisfaction  with income support services, concerns regarding violence and abuse, inadequate social work support and a general lack of respect. policy  The results of this development,  practice in general.  service  study have provision  implications and  social  for work  Ill  Table of Contents  Abstract:  ii  Table of F i g u r e s  v  Acknowledgements  vi  Introduction Language Issues:  1 5  Conceptual Context History Normalization and the Social  Model of Disability  Introduction The Principle of Normalization Social Role Valorization Social Theory of Disability Critique of Normalization Critique of the Social Model Discussion  Research  19 20 23 24 31 35 38  Orientation  41  Introduction Ethical Issues: Validity/Credibility Issues:  41 43 46  Methodology Focus Group Introduction Sample Interview Narratives Introduction Sample Findings Focus Group Issues: Comments: In tervi ew Narra ti ves Bob Core Narrative: They Just Issues Tracey Core Narrative: You Live Issues Franklin . . .  8 8 19  49 49 49 52 54 54 57  Use You and Learn  Core Narrative: You Have to be Nice Issues  60 60 60 66 69 71 71 ..73 78 78 80 87  '. .88 89  IV  Janey  95  Core N a r r a t i v e : If Issues Summary  There Was an -Institution  Discussion Introduction Issues  Open, I Would Go. 96 97 102 ..  104 104 .105  .  Lack of Choice/Control Implications for Policy Inappropriate Support Poverty Implications for Policy Violence and Abuse Implications for Policy  Social  105 106 107 108 109 110 Ill  .  Work Role  .112  Implications for Practice Direct Service The Profession  Methodological  114 114 115  Considerations  115  Consent:  116  Focus G r o u p / N a r r a t i v e T e c h n i q u e s : Transcripts/Findings:  117 118  Directions  for  Future  Research  120  Conclusion  122  References  124  Appendix A Focus Group Informed  Consent  Appendix B Focus Group Question  Guide  Appendix C Interview Informed Appendix D Interview Question Appendix E Behavioural  Research  Consent  ••  .Board Certificate  135 135 136 136  Form  Guide Ethics  133 133  Form  of Approval  138 138 139 139  V  Table of Figures  Figure 1  22  VI  Acknowledgements There are a number of people I have to thank for their support for my work.  In no particular order these include my family for  letting me move back in; my boss, Lorraine, for letting me rearrange my work  schedule  every  few months  to accommodate my  classes; my  doctor, Giselle, for writing those prescriptions; Michael, Candy, Ernie, Carol and Tim for listening; Susan, Flo, Sonia, Dawn, Doug, Stan and Chuck for showing me what it all means in the real world; and Carolyn who went way above and beyond the call of friendship to provide me with unconditional, if critical, support, grammar lessons and ways out of corners I'd written myself into - I could not have done this without her. I must also thank my advisor, Richard Sullivan and committee member Brian O'Neill for their support with this thesis and for the ways they challenged my thinking through their teaching. Finally, this work is dedicated to the self advocates who have given me their time, their thoughts, their trust and, most of all, their continuing and enthusiastic support. This project is not over for us.  1  Introduction In the 1981 Speech from the Throne, the government of British Columbia announced a significant policy change with respect to its treatment of people with intellectual disabilities.  The emphasis  was to change  life in the  community  from institutional  (Roeher  Institute,  care to supporting  1991)'.  This  statement  was  the  formalization of a shift in policy which began several years before, in part as a response to increasing pressure from community living advocacy groups which had been lobbying to close British Columbia's large  institutions  several  years  for people  (Roeher  with  Institute,  intellectual  1991).  Under  disabilities  for  this policy,  the  government established plans to downsize and eventually close the institutions and put in place programs to enable and support people with disabilities to live in the community. In the  years  since  the  Throne  Speech, hundreds  of  British  Columbians with intellectual disabilities have moved back into their communities and are receiving a variety of services to support them there.  These  services,  however,  rather  than  promoting  the  independence and community integration they claim to, have, in fact, been seen by some as perpetuating the poverty and marginalization faced by many people with disabilities  (Roeher  Institute, 1990) .  These programs are rooted in a residual welfare orientation and are reflective of an ideology of ^medical individualism'.  This ideology  promotes the belief that disability is an individual problem that can  only  be  addressed  through  medical- intervention  and  control.  2 This set of values has led to the professional management of the lives of people with intellectual disabilities 'for their own good' (Biklen, 1988) . Critics of this 'paradigm of care' maintain that disability is in fact a social construction (for example, see Oliver, 1990) built upon  a  variety  of  social  and  economic  pathology rooted in the individual.  factors,, rather  than  a  This perspective moves private  problems in to the. sphere of social issues; it restates individual limitations as societal barriers and shifts the responsibility for change  and  adaptation  larger society. people  as  from  individuals  with  disabilities  to  the  By doing so, this viewpoint also reaffirms disabled  integral members  of  society  responsibilities as non-disabled people.  with  the  same  rights  and  People with intellectual  disabilities who have been devalued within the traditional framework are re-valued when their experiences are considered from a social constructionist developed  from  perspective. the  Progressive  perspective  of  theory  people  with  can  then  be  intellectual  disabilities using their own words to describe their experiences. In this way, theory develops that empowers people with intellectual disabilities to effect positive change in their own lives without being victimized by the dynamics of that change.  People with intellectual disabilities have historically been the focus of an abundance of quantitative medical, educational and rehabilitation research.  These disciplines have generally centered  on the problem of intellectual disability and have attempted to find  3  ways to minimize or prevent it (Rioux, 1994a).  Until recently, very  little  life  experiences  of  people so labeled and even less has been qualitative in nature.  As  such,  research  there  has  is  examined  very  little  available to the disability which  to  base  decisions  the  goals  and  descriptive, community  regarding  first  hand  information  and service providers  political  upon  action, . policy  and  support services. This exploratory My  preliminary  study attempts to fill this knowledge gap.  research  involved  a  focus  group  discussion  with  people with intellectual disabilities, who describe themselves as self-advocates. The group shared experiences and opinions which were important  to  them.  Using  that  information  as  a  guideline,  I  conducted personal interviews with four individuals who participated in the original group.  My primary goal was to develop a greater  understanding of the experiences of self advocates with intellectual disabilities  and  to  make  that  knowledge  accessible  to  service  providers and policy makers.  One of my assumptions going into this process was that, for the most part, people with intellectual disabilities frequently do not have the opportunity to be heard and express their opinions.  It  is also my belief that, because of the traditional medicalized view of disability, professionals working with people with disabilities tend to assume 'they know best' and make policy and provide services based primarily on their professional assessment of the desires of  4 people with intellectual disabilities.  According to Marcia Rioux  (1989): people with mental handicaps must submit to the guidance of other persons or authorities before making important decisions. These include decisions to marry, to vote, to have children, to enter into financial contracts, and to live in independent environments. They must also submit to authorities to receive benefits such as education, income, employment, housing and so on. Other people who have not been [so] labeled may generally make these decisions without obtaining the consent of anyone and this autonomy is protected by the state. (p.l)  Drake  (1994,  exclusion service serve  1996)  from  has  power  organizations  to maintain  documented  of  people  in Britain  this  inequity,  the  with and  lack  of  involvement  disabilities  in  voluntary  some of the barriers  such  disabled people who manage the services.  as  the  attitudes  and  which  of non-  Wehmeyer & Metzler (1995),  in their analysis of the results of a major survey of intellectually disabled people in the U.S., found that although self determination was important to the people surveyed, they generally felt they had fewer choices and less control over their lives than they wanted. This was found to be especially true concerning larger-issues, such as choosing to marry or not, deciding where to live or consenting to medical procedures.  In my work with people who have intellectual  disabilities, I have seen this lack of autonomy and lack of respect first hand.  To a large extent it could be considered the normal  state of affairs  for many people  so labeled.  People often have  little choice regarding the conditions of their lives and face many disabling barriers when trying to exercise the choices they do have. This study is to be a documentation of some of these barriers.  5  Although my goals for this project are varied, I hope to make a contribution to the fields of intellectual disability and social work in the process.  I would like this study to play a part in the  development of a body of qualitative and empowering research for and about people with intellectual disabilities which puts the focus of inquiry on the experiences of disabled people. also like this project to spark more  interest  Finally, I would in and  commitment  towards the disability rights and community living movements among social workers, as well as begin to develop a social work research body  in this  area.  Social work has not  traditionally  played a  dynamic and empowering role in the field of intellectual disability (Hanley & Parkinson, 1994); it is my wish that this study helps to change this.  Language  Issues:  The labeling of people considered intellectually disabled and the power  and  consequences  of  those  labels  is  concern and discussion (Danforth & Navarro, 1998).  an  area  of much  Davies & Jenkins  (1997) have said that people with intellectual disabilities "carry a label and an associated social identity which is a major determinant of  their  material  relationships"  prospects  and  the  character  of  their  social  (p. 95) . As a result of the growing recognition of  the social constructedness of intellectual disability as a concept (Danforth,  1997)  and  the  rejection  of  terms  such  as  mental  6 retardation Ellis  following  & Jones,  a process  of  1993; Stockholder,  consciousness 1994),  I will  raising not  (Eayrs,  engage  in  labeling activities in the course of this study, other than to refer to  the  respondents  disabled.  being  self-identified  as  intellectually  How that term is conceptualized by those affected is not  for me to decide. paternalism. have  as  For  To chose any other course would be to engage in too  long, people  had their various  trainable,  mildly  labels  handicapped,  and  with  intellectual  identities  severely  disabilities  (such as educable,  handicapped,  etcetera)  assigned to them by professionals rather than having the right to chose to name themselves  (Woodill, 1994) .  These attitudes are also  in keeping with the request made by the participants in this study that certain words (handicapped or retarded) not be used to describe them.  ' The above notwithstanding, it should be noted that a variety  of terms are used and have been used over the centuries to refer to people with intellectual disabilities. As a result, through out this document  there  retardation, learning  will  be  references  developmental  difficulties.  made  disabilities, As  well,  to  people  mental  historical  with  mental  handicaps terms  such  feebleminded, idiot, mental defective and moron are also used. these terms refer to the same group of people.  and as All  When I use language  that is now considered offensive, I do so to accurately represent the periods of time during which they were used. (1994)  writes,  sensibilities  "these  words  ...  reveal  in  their  For, as Trent honesty  the  of the people who used them and the meanings  they  7  attached to mental retardation" future  writers  will  think  of  (p. 5) . my  use  I can only wonder what of  the  term  intellectual  disability, but I rationalize my choice with the knowledge that, for the  first  time  in  their  history,  people  with  intellectual  disabilities are finally at least involved in naming themselves.  Conceptual Context History The  goal  experiences  of  and  this  thesis  perceptions  is of  not  only  people  disabilities, but to put them into context.  to  put  with  forth  the  intellectual  By context, I refer to  the historical, political, theoretical and policy factors which have combined to create the world in which these individuals live.  What  follows is a brief attempt to outline some of these trends.  Defining  intellectual  disability  and  identifying  population so categorized is not a simple process. notes  the  difficulties  inherent  in  the  Rioux  label  the  (1994b)  'intellectual  disability': First, mental handicap is based on a combination of factors (including a deficit in intellectual development and an impairment of social functioning ability) and has a variety of causes. It is not therefore a strictly medical or biological matter, as it is also a socialadministrative category. Second, the level of the functioning ability or disability varies significantly, from mild to profound, and is thus not a single dichotomy, as would be needed for legal classification. Third, mental handicap is not a static condition; it is subject to change, as it is a product of the interaction between individual capacities and social demands, and thus creates difficulties for policy purposes. Fourth, it is a label applied to a group of people so diverse they have few characteristics in common apart from classified as having a mental handicap, (p.3) Since  the  label  has  both  medical  and  political  dimensions,  its  meaning and its breadth has changed dramatically through the ages. Despite  this  variability,  however, "mental  retardation  is  a  ...  9  phenomenon that undoubtedly has been apparent since the dawn of man. Any  given  society,  including  the  earliest  tribes,  unquestionably  contained members who were more capable and members who were less capable than average" (Scheerenberger, 1983 p.3). In ancient societies, infanticide was regularly practiced on children  found  to be  less  than perfect  standards of the time and the community.  based  on  the  prevailing  The Spartans and Athenians  in Greece were particularly zealous in their efforts to maintain a strong population (Scheerenberger, 1983). the Greek example probably  into the first century A.D.  infants were also abandoned frequently their  mutilated  effectiveness  Christianity's  by  to the  their  Towards  increased,  Rejected  state, and as children, were  ^caregivers'  as beggars.  influence  The early Romans followed  in  the  order  to  increase  fourth "century, '-"as  infanticide became  illegal  in  the empire and more charitable attitudes towards weaker members of society were developing. declared  that  responsible  those  In the sixth century, Emperor Justinian  identified  as  mentally  infirm  were  for their actions and should not experience  consequences as others.  not  the same  He also established institutions to provide  care for those unable to care for themselves. In Europe, throughout the Middle Ages, the treatment of people with  disabilities  intellectual  varied  disabilities  considerably.  were  probably  able  Some  people  to make  with  places  for  themselves in agricultural areas where the need for manual labour was high village  (Nibert, 1995). idiot  or  court  Others would have joined the ranks of buffoon,  surviving  off  the  largess  of  10  wealthier benefactors.  More likely however, many would have become  beggars, living on the edges of their communities  (Scheerenberger,  1983). The  first  legal recognition  of intellectual  about in the thirteenth century in England. mental  illness  (lunacy)  and  intellectual  disability  came  A distinction between  disability  (idiocy)  was  made at this time as well, at least inasmuch as to the dispensation of the afflicted individual's estate.  In the case of a lunatic, who  may regain his reason, property was held in trust by the Crown until his recovery or passed on to this relatives after his death.  On the  other hand, because idiocy was understood as an inborn and permanent condition, the Crown seized the individual's property and profits until his death (Rioux, 1994b).  This law however, probably had very  little impact on most people with intellectual disabilities as very few  of  them  were  likely  (Scheerenberger, 1983).  to  have  been  property  holders  The majority of disabled people were not  legally recognized until the Poor Law Act of 1601 which made their support  a  state  responsibility.  People  with  intellectual  disabilities were not specifically dealt with in the law until the nineteenth century (Rioux, 1994b). There was little change in the treatment and understanding of intellectual disability for the next several centuries in Europe. Many disabled children were abandoned to church operated hospitals or orphanages where the mortality rates were staggering. survived  into  adulthood  often  ended  up  in  institutions  Those who such  as  11 Bethlem/Bedlam  in London or Bicetre in Paris.  The conditions in  these facilities were deplorable: chains were commonly employed to treat those who acted out or to restrain those who might hurt themselves. Dark cells were common and sexes mixed. Staff were few in number, many were satisfying prison sentences, and their quality left much to be desired. (Scheerenberger, 1983 P-43> It  was  not  until  revolutionary  the  'moral  eighteenth  treatment'  century  placed  the  and  Phillipe  emphasis  Pinel's  on  humane  practices and care that conditions in these institutions began to improve (Scheerenberger, 1983). Truly  significant  changes  in  the  treatment  of  people  with  intellectual disabilities did not come about until the nineteenth century.  Edward  idiots', believed  Seguin, who  was  that idiots could  known  as  the  'apostle  of  in fact be taught and  become independent and involved members of society  the  could  (Trent, 1994).  Seguin's 'physiological education' was based on the notion that the will and the senses of the idiot were underdeveloped and required physical and moral training.  As Seguin wrote:  the idiot wishes for nothing, he wishes only to remain in his vacuity. To treat this ill will, the physician wills that the idiot should act, and think himself, of himself, and finally by himself. The incessant volition of the moral physician urges incessantly the idiot out of his idiocy into the sphere of activity, of thinking, of labor, of duty and of affectionate feeling; such is the moral treatment. (1976/1864 pp 158-9) While Seguin would later lower his expectations  for his  students  somewhat, his techniques and goals would become the standard for the training and care of people with intellectual disabilities in Europe  12 and the United States in the mid nineteenth century and his legacy would continue into the twentieth (Trent, 1994). Part of this legacy was the emphasis placed on medicine in the study  of  idiots  and  the  importance  of having  superintendents of educational facilities. doctors  were  support  of  best  idiots  physicians throughout  the  (and  qualified  (Trent, later  1994).  Coming  the  Following  psychiatrists)  act  as  Seguin felt that medical  to- supervise  North America, a trend  present day.  physicians  would  that would  training  this  precedent,  head  facilities  continue  about at a time when medical  and  until  the  authority  in  general was increasing and having little competition in the field, physicians  had  domain  include  to  little  difficulty  this area.  in expanding  This marked  their  professional  the beginning  of the  medicalization of intellectual disability and the establishment of medicine's power over the lives of people with disabilities (Rioux, 1994b). As labour  industrialization grew,  the  world  increased outside  and  the  the  demand  institutions  difficult for Seguin's graduates to compete in.  for  skilled  became  more  As well, although  it was now established that idiots (or the feebleminded as they were becoming  known)  could be taught  and  socialized,  those with more  severe disabilities were frequently not able to fend for themselves in  the  community.  As  such,  fewer  people  returned  to  their  communities and, by the 1880's, the facilities that had originally been set up as schools became permanent custodial institutions.  The  stated goal of these institutions was "the protection of vulnerable  13 people from a world "that would take advantage of them" p.94).  (Trent, 1994  Soon, however, the emphasis would shift from protection  to protection  of  from.  In the late nineteenth century and into the twentieth century, as Darwin's work on evolution was becoming widely understood, there was an increasing interest in the role of heredity in human traits and, through heredity, in eugenics (Trent, 1994). It was during this period that people with intellectual disabilities were increasingly seen as a threat to society, both morally and genetically 1995; Simmons, 1982).  (Nibert,  The feeble minded and the moral imbecile were  thought to make up a large segment of socially undesirable groups, such as the poor, criminals and prostitutes.  Since these traits  were innate and inherited, they would result in multigenerational feeble  mindedness  which,  if  left  unchecked,  could  contribute to the deterioration of the human race. public care  potentially  These trends in  (and scientific) opinion forced the focus of institutional  to  change  from  providing  affected  people  asylum  from  the  stresses of outside life, to a harshly custodial model which existed to  protect  society  from  the  threat  posed  by  feeble  mindedness  (Simmons, 1982). A proponent of this policy was Henry Goddard who was the head of research at the Vineland Training School in New Jersey at the time (Danforth, 1997; Trent, 1994).  Goddard introduced intelligence  testing to North America and claimed that, through his testing, he had come to understand that intelligence was "a dominant  genetic  trait, and that all varieties of mental retardation were due to a  14  single recessive gene"  (Gelb, 1997 p.452).  connection between genetic feeblemindedness his portrait of the Kallikak family In it, he followed two  Goddard  'proved' the  and social failure in  (1912, cited in Gould, 1981).  branches of the family descending from the  same 'respectable' man who had a dalliance with a feebleminded woman (starting  kakos  the  or  bad  line)  and  respectable woman, resulting in the kallos line  deteriorated  while  the  Goddard  immediately  Kallos  used  feebleminded  branch  his  produced  study  could  not  into  as  be  married  upstanding  by  an  equally Kakos  or good family. The  feeblemindedness  support  helped  then  for  members  his  policies  and  poverty,  of  society.  belief such  that  as  the  mandatory  education and that they would ultimately "clog the wheels of human progress" (p. 78, cited in Gould, 1981). Goddard felt that the threat posed by the feebleminded was so overwhelming  that  he  sought  to  control  that  threat  wherever  possible, through restricted immigration, institutionalization and, if  necessary,  defective  sterilization  genes  on.  On  of the  those subject  destined of  to  pass  feebleminded  their people  reproducing, he wrote: If both parents are feeble-minded all the children will be feeble-minded. It is obvious that such matings should not be allowed. It is perfectly clear that no feebleminded person should ever be allowed to marry or to become a parent.. It is obvious that if this rule is to be carried out the intelligent part of society must enforce it. (1914 p.561 cited in Gould, 1981) While Goddard would later soften his stance on sterilization, the notion had become popular with many and would occurrence  in  institutions  for  decades  to  come  remain a  frequent  (Pfeiffer, 1994;  15 Smith & Polloway, 1993). sterilized  Some estimate that over 50,000 people were  in •the United  States alone  (Smith, 1994),  and that a  large percentage of them were involuntary. After the lessons of the Second World War and the horrors of Nazi eugenic programs had been learned, support for deterministic and eugenic based policies declined (Nibert, 1995).  This change in  attitude, coupled with the social reforms of the post war years, resulted which  in a move  included  more  from a strictly of  an  custodial  emphasis  on  orientation  recreation,  to one  training  and  education (Simmons, 1982). This period  also  saw a tremendous  growth  in the number  of  admissions, especially of younger children, and in demand for more facilities.  This rise in demand for institutional placements was  due to conventional medical people  with  better  served  shortage  intellectual  of  by being community  thought  at the time which held  disabilities in  (and  institutions  services  for  their  families)  and because  many  families  of with  a  that were  severe  disabled  members (Collier, 1995b). Despite this growth in the number of placements, the 1950's and 1960's saw a number of changes in the way the institutions were being viewed by  society  as a whole.  There were  exposes on the  conditions in some state operated institutions, such as Burton Blatt and Fred Kaplan's graphic pictorial study, Christmas (1966)  as  well  as  'parent  confessionals'  in  which  In  Purgatory  parents "of  institutionalized children came out (so to speak) and publicly told their  stories  (Trent, 1994).  Institutions  were beginning  to be  16 viewed as a necessary evil; they may not have been the first choice but were often the only choice for young, upwardly mobile families with a disabled child. It was also during this time that the first parents' groups were being formed (Trent, 1994).  In British Columbia, for example,  families began to demand community based services and organized to advocate  for  changes  Retarded  Children  of  in government British  policy.  Columbia  The Association  (now the  British  for  Columbia  Association for Community Living) was established in 1955 (Collier, 1995a).  The association's initial goal was to lobby for community-  based education programs for children with intellectual disabilities who were not living in institutions. successful which  and resulted  made  the  responsibility  of  in the  education the  of  public  The society's efforts were  1959 amendment the  to the School Act  moderately  school  system  retarded  (Collier,  the  1995a-) .  Through the 1960's and into the 1970's the provincial association, along with its member regional organizations, began to work for the development  of  smaller  community-based  residential  programs  as  alternatives to the large centralized institutions (Collier, 1995b). However, it was not until the 1970's when Wolf Wolfensberger's ^principle  of normalization'  (Wolfensberger,  1972) was  introduced  and embraced by those involved in the movement that there was any large scale questioning handicaps  and the  of the segregation of people with mental  legitimacy  of the  institutions.  Normalization  (which I will discuss later in detail) would prove to- be a powerful force as it was "a wonderful weapon to use in the political struggle  17 for better care for developmentally could be against it?  handicapped people  - for who  It had the peculiar quality of appealing to  society's sense of fairness as well as having about it a ring of science" (Simmons, 1990, p. 165). Armed with this "weapon", advocacy groups began to pressure governments to close down the institutions and to develop services for people to live and work in their own communities  (Roeher Institute, 1991).  This was the birth of the  Community Living Movement. The this  day  revolution (Elks,  institutions  are  that  1994). being  normalization All  closed  returning to their communities. all three of the large  over and  spawned  North  people  is  continuing  America with  and  to  Europe,  disabilities  are  In British Columbia, for example,  residential  facilities  for  disabled people have been closed after a. process  intellectually lasting  fifteen  years and involving all levels of government, parents, professionals and advocacy groups. mean  of  people  the with  But, in the community does not necessarily  community. intellectual  The  segregation  disabilities  and  that  marginalization  the  community  of  living  movement hoped to eliminate through this process has not gone away. This has suggested to some that the reasons  (and the answers) may  lie elsewhere. In the last number of years, there has been a growing body of research and literature that has analyzed disability  from a very  different perspective than the traditional individual/medical model. The social model of disability has its roots in material analysis and questions the perception of disability as pathological  (Oliver,  18 1990). for  It is a critical theory and at its core is demand for rights  people  somewhat  with  disabilities.  problematic,  disabilities  Although " this  especially  regarding  approach  people  is  with  still severe  (Ferguson, 1990, 1994), I assert that it is within the  social model  that  the  situation  facing  intellectual  can be best  dealt with.  In order for this to happen, however, the social model  disability  must  theories examined.  be  understood  and, more  with  disabilities  of  understood  people  and  its  importantly,  departure., from  best  older  19  Normalization  and the Social  Model of  Disability  Introduction When the principle of normalization was  first introduced  in  North America in the late 1960's, it quickly became the theoretical standard for organizations providing services to people with mental handicaps through out the United States and Canada Brown  & Smith, 1992; Chappell, 1992;  (Brown, 1994;  Ippoliti, Peppey  & Depoy,  1994) .  Normalization theory gave service providers, families and  others  involved  disabilities  in  the  an historical  lives and  of  people  practical  with  analysis  intellectual of  how  people  labeled intellectually disabled had come to be socially devalued and segregated and, more importantly, what could be done to counter this devaluation and bring people back into the community (Wolfensberger, 1972). social  The method and function of normalization and its descendant, role  interpreted  valorization and,  misinterpreted summarized  (Wolfensberger,  according  by  to  Wolfensberger  countless. individuals,  as "the  1983),  but  have  been  (1983, finally  establishment, enhancement, or defense  1995), can  be  of the  .social role(s) of a person or group, via the enhancement: of people's social images and personal competencies" 234) .  (Wolfensberger, 1983, p.  The practices which were guided by the principle since its  development have resulted  in significant positive  changes  in the  lives of people with intellectual disabilities (Brown, 1994; Smith & Brown,  1992).  However,  there  is  a  growing  perception  that  20 normalization  is  ultimately  inadequate  to  the  task  of  fully  including people with intellectual disabilities into society because of  the  Primary  limitations among  inherent  these  constructedness  of  are  its  disability  in  it  and  its  lack  of  recognition  and  its  lack  ideological  of  of  the  analysis  base. social of  the  societal features which serve to oppress and marginalize people with intellectual  disabilities  (Chappell,  1992).  This  chapter  is  an  attempt to examine the principle of normalization in light of the developing social theory of. disability  (Oliver, 1990) and in terms  of structural theory (as discussed.by Mullaly, 1993) and to explore the consequences  for people with intellectual disabilities  within  these models.  The Principle The  of  Normalization  concept  of  normalization  Scandinavia in the late 1960's  was  originally  developed  in  (Bank-Mikkelsen, 1969; Nirje, 1970,  both cited in Wolfensberger, 1972) .  It was modified and adapted for  North America in 1972 by Wolf Wolfensberger and his name has been associated with developed  during  it since that time. a  period  of  The  significant  concept was change  in  originally policy  and  attitudes towards the living situations of people with intellectual disabilities  and  concerns  living in institutions  about  the  quality  (Wolfensberger, 1972).  similar concerns developing  of  life; for  people  This coincided with  in North America and Britain and the  growing belief that people with intellectual disabilities would be  21  better served living in the community rather than large segregated facilities.  The Scandinavian version of normalization was primarily  a method to support community variant became a theory  living, whereas the North American  (Chappell, 1992) which purported to explain  the social devaluation of people with intellectual disabilities and to provide an empirically based method to prevent or ameliorate it (Wolfensberger, 1983). Wolfensberger  saw his original version of the theory  as an  attempt "to convert the early formalizations of normalization  ...  into  and  a  scientific  theory  that  is  universal,  congruent with social and behavioral science"  parsimonious,  (1983, p. 234) .  He  also envisioned this model being applied to other human services and becoming a "new ideology of human management"  (1972, p. 27) .  The  science Wolfensberger based his theory on was that of the sociology of deviancy and it was his belief that this theory was applicable to all services involved in the "management of deviant behavior" (1972, p. 27).  The  In his original North American presentation of the theory,  Principle  of  Normalization  in  Human  Services  (1972),  Wolfensberger describes the labeling of deviance and then applies it to  the  historical  societal  views  of  disabilities such as subhuman organism, innocent,  sick,  object  of ridicule  people  menace,  and eternal  with  object child.  intellectual  of pity,  holy  He then goes  on to discuss the consequences of each view for the treatment of individuals so labeled (pp. 16-24).  For Wolfensberger, the results  of  and,  these  labels  were  segregation  ultimately,  destruction.  22 Normalization was then put forward as a method to avoid or minimize this labeling and thus avert the consequences. In practice, normalization  seeks  to  improve  or protect  culturally  social value of people at risk for devaluation by using normative  the  methods to establish behaviors and characteristics which  are as close to culturally as possible.  normative  By following  for their age and gender group  this principle, service providers  can  theoretically increase the appearance of normalcy and decrease the perceived deviancy of the intellectually disabled people they work with .  According to Wolfensberger, "culturally normative" refers to  typical  or  conventional  actions  or appearance  as defined  by  the  dominant culture. Normalization clinical  level  as  was is  theorized  to work  illustrated  by  on more  figure  1  than  simply  (adapted  a  from  Wolfensberger, 1972, p. 32): Figure 1 Person  Primary & Intermediate Social Systems  Societal Systems  Interaction Eliciting, shaping and maintaining normative skills and habits by means of direct physical and social interaction with them Eliciting, shaping and maintaining normative skills in persons by working indirectly through their primary and intermediate systems such as family, school, work, service agency and neighbourhood Eliciting, shaping and maintaining normative behaviour in persons by appropriate shaping of large societal systems such as entire school systems, laws and government  Interpretation Presenting, managing, addressing, labeling and interpreting individual persons in a manner emphasizing their similarities to rather than differences from others Shaping, presenting and interpreting intermediate systems surrounding a person or target persons so that these systems as well as the persons in them are perceived as culturally normative as possible Shaping cultural values, attitudes and stereotypes so as to elicit maximal feasible cultural acceptance of differences  23 As  can  be  seen  in  the  figure,  normalization  includes  applications and expressions at the micro, meso and macro levels of social  systems,  although,  in  practice,  most  of  the  work  of  normalization takes place on the personal or clinical level.  Social  Role  Valorization  In 1983, Wolfensberger reformulated and renamed the principle of normalization, dubbing it social  role  valorization.  He did so,  in part, because he felt the term normalization had developed many different meanings and interpretations and also because of a change in his own view of the theory  (p. 234) .  Wolfensberger changed the  focus of the theory from one which included consideration of all three  levels of  social  systems  functioning  to one which  focuses  almost exclusively on the clinical due to his: recent insight... that the most explicit and highest goal of normalization must be the creation, support, and defense of valued social roles for people who are at risk of social devaluation. All other elements and objectives of the theory are really subservient to this end, because if a person's social role were a societally valued one, then other desirable things would be accorded to that person almost automatically, at least within the resources and norms of his/her society, (p. 234, emphasis in the original) The key strategies involved  in social role valorization are  now those which are aimed at improving an individual's social image and increasing their competencies (p.236), which should result in an increase in the person's social role value.  The particular methods  for doing so remained the same as under normalization  (i.e.) the  24 establishment  of  culturally  normative  and  age  appropriate  appearance, activities, living arrangements, behaviour, etc.  Social  Theory  of  Disability  While normalization explain the devaluation  and  social  role valorization  of people with disabilities  attempt  to  in terms  of  deviancy and then provide methods to minimize that deviancy, the newly emerging social theory of disability endeavors to address the marginalization of disabled people  from a materialist  perspective  (Erevelles, 1996; Finkelstein, 1980; Gleeson, 1997; Nibert, 1995; Oliver, 1983, 1990, 1996). A fundamental issue in the social theory of disability is the recognition and analysis of the social constructedness of disability (Oliver, 1983, 1990, 1996).  According to Oliver (1990), disability  is constructed by a variety of social and economic factors which include  culture,  capitalism  and  ideology.  An  analysis  of  the  cultural production of disability shows that, while impairment and disability  exist  in  many  cultures,  the  experiences  of  disabled  people vary from society to society, ranging from marginalization to exhaultedness involved  (Oliver,  in cultural  1990).  notions  This  illustrates  of disability, but  the  relativism  as Oliver  makes  clear, cultural definitions can be understood somewhat in terms of the relationship between the mode of production and the values of a given society. differently  For example, a nomadic society may define disability  from an agriculturally  based one and disabled  people  -  25  living in a society with a religious value system will likely have a different collective experience than those living in a culture which is based on scientific values  (p.22).  In terms of  intellectual  disability, Ferguson (1994) has stated that "mental retardation is a plastic  concept  historical criteria  that  is inevitably  development for  estimations  the and  and  shaped by  cultural  diagnosis  of  observations  prejudice"  mental  of  shifting (p.  retardation  intellectual  forces of  xvii). are  ability,  The  based  on  adaptive  functioning and behaviour, all of which are variable and subject to interpretation (Manion & Bersani, 1987). The rise of capitalism has also had a significant effect on the construction and definition of disability. In particular, the consequences of industrialization and the move to factory based work which often excluded people with disabilities (Oliver, 1990; 1996). In addition to this development (or, indeed, because of it), changes in  societal  attitudes  and  relationships  occurred  that  in  turn  combined to create a view of disability as a social problem which required  classification  and control.  The institution became  the  solution to this problem and those who would not or could not adjust to  the  social  order  were  incarcerated  and  segregated.  As  time  passed, institutions and classifications became more specialized and began to distinguish between different classes of non-conforming or non-contributing  people  ill,  and  the  poor  intellectually  such as children, the  the  disabled  disabled. people  were  For  sick, the mentally  example,  generally  in  Canada,  incarcerated  in  prisons or asylums for the mentally ill until 1876 when the Asylum  26 for Idiots at Orilla in Ontario opened (Simmons, 1982). primary motivations for this specialization belief  that  'incurables'  (people  with  and separation was the  intellectual  could be maintained at less expense than  One of the  'curables'  disabilities) (people with  mental illnesses) who required better care in order to recover and become contributing members of society. As nature  stated, with of work,  the  there  rise  also  of capitalism  came  about  and  changes  changes  in the  in attitudes  and  ideologies which contributed to the construction of disability.  The  ideologies in present western societies have combined to create the current dominant view of disability.  As Oliver (1990) describes it:  the hegemony that defines disability in capitalist society is constituted by the organic ideology of individualism, the arbitrary ideologies of medicalisation underpinning medical intervention and personal tragedy underpinning much social policy. Incorporated also are ideologies related to concepts of normality, ablebodiedness and able-mindedness. (p.44) The key ideologies involved in the modern definition of disability are individualism and medicalization. view of disability  Individualism results in the  (and the inability to compete in the marketplace  which accompanies it) as an individual pathology and medicalization is the process by which that pathology is controlled categorized and treated  (Oliver,  1990).  The  practices  which  come  about  as  a  consequence of these constructions lead to'the next aspect of the social theory of disability, that of oppression.  To view the situation of disabled people through the lens of oppression is to highlight the similarities disabled people as a  27 group have with other marginalized groups such as, women, people of colour and gay and lesbian people.  However, according to Abberley  (1987), one of the features of oppression is that it., operates....on specific groups in different ways and this requires an investigation of the types of oppression particular to disabled people and the consequences of that oppression. One  type  of  oppression  disabled  people  face  is  economic.  People with disabilities who are employed are often working in low paying jobs and are at great risk for unemployment  (Jenkins, 1991).  Most people with disabilities, especially those with  intellectual  disabilities, however, are not employed and are made dependent on social security benefits.  The poverty which disabled people must  live with becomes a significant constraint and obstacle in realizing their goals and desires (Chappell, 1992).  Poverty also"often makes  it necessary for people with disabilities to live in state funded residential facilities in order to access the support they require but  are  not  able  to  afford  otherwise  (Jenkins,  1991).  This  systematic poverty results in disabled people being segregated and having  less  control  marginalization  often  Jongbloed & Crichton  over  their  lives.  in  political  results  As  well,  economic  marginalization.  As  (1990) have written, "our society values the  efficiency, productivity  and economic usefulness  of human beings.  Disabled adults who are not performing work-linked economic roles are  marginalized  and  their  input  consequently devalued" (p. 33).  into  the  political  debate  is  28  Psychological  oppression  situation of disabled people.  is  another  common  feature  of  the  One aspect of this type of oppression  is the stereotype of disability  and the limitations and  expectations which accompany it (Abberley, 1987) .  societal  There are several  stereotypes of disabled people, but they can generally be divided into two categories, either brave brave  or tragic  (Abberley, 1987).  The  disabled person is one who makes an effort to overcome his or  her disability or tries to live as if it did not exist.  The  tragic  disabled person, conversely, is overwhelmed by the disability and is embittered, self-pitying and dependent because of it.  The important  issue in both these stereotypes is that the entire identity of the person is bound up in the disability, yet the "disabled state is taken  for  p. 14) .  granted  as  necessarily  illegitimate"  (Abberley,  1987,  This type of psychological pressure, which is closely- tied  to the individual pathology view of disability, forces the disabled person to see the disability as a personal challenge or battle which can be won or lost. This view of disability disabled  people  face,  that  leads to another of  physical  form of oppression  oppression.  Physical  oppression takes many forms, but one of the most insidious is abuse which  takes  (Sobsey,  place  1994;  in  the  Abberley,  name  of  treatment  1987).  People  or  rehabilitation  with  intellectual  disabilities are regularly subjected to "treatments" for behaviours identified  as inappropriate  psychoactive drugs exists)  and/or  or violent  which  involve  the use  of  (sometimes where no diagnosis of mental illness  aversive  behaviour  management  techniques  (Sobsey,  29 1994)  using  noxious  stimuli  incidents of the behaviours.  or  electric  shock  to  reduce  the  While there is controversy over the  use of such techniques (Rioux, 1988), they are often defended on the basis  of efficacy  and  the professional  need  to have  a range  of  treatment options (Spreat & Behar, 1994). A frighteningly prevalent form of violence directed at people with intellectual disabilities is sexual in form.  In a review of  studies on the prevalence of sexual violence against people with intellectual  disabilities, Senn  (1988) discovered  figures  ranging  from 39% to 68% of girls and 16% to 30% of boys with intellectual disabilities eighteen.  for  experiencing  sexual  assault  before  the  age  of  An even more disturbing feature of the abuse of people  with intellectual disabilities, however, is the chronicity of the abuse.  In their study, Sobsey & Doe  (1991) found that 79.6% of  their sample of disabled people who had been sexually assaulted had been victimized more than once.  They also found that of people with  more severe intellectual disabilities, 56% had experienced ten or more episodes of sexual violence in their lives.  In the same study,  Sobsey & Doe discovered that 56% of offenders had relationships with the victims which were consistent with those of non-disabled victims (i.e.) etc.  family  members,  acquaintances,  generic  service  providers,  They also found that, in the case of disabled people, 44% of  perpetrators were involved in their victims' lives because of the victims'  disabled  status, for example, personal  residential support staff, etc.  care attendants,  In another study, Sobsey  found this figure to be closer to 50%.  (1994),  If one accepts these figures  30 as  accurately  reflecting  reality,  people  with  disabilities  have  double the likelihood of being victimized in part because of their exposure to the service system (Sobsey, 1994) .  The types of oppression described above are merely examples of the variety of oppressions particular to people with disabilities. Abberley dominant  (1987)  sees  social  the  effects  order  in  of  several  oppression ways.  as  serving  These  the  include,  disadvantaging disabled people economically and psychologically so as to make the disabled identity despised and undesirable, creating a passive welfare class which serves as a warning to others and, finally,  presenting  this  disadvantaged  state  as  a  natural  consequence of individual deficiency that legitimates the inequities (pp. 16-17) .  As can be seen, the social theory of disability incorporates a material  analysis of the conditions which create disability  as a  concept  and  with  disabilities hegemony  the  factors  (Ervelles,  which  benefits  which  1996). from  subjugation of disabled people.  serve It  the  is  to also  continued  Abberley  oppress a  people  challenge  to  the  marginalization  and  (1987) has summarized it  in the following manner: 1) [it] recognises and, in the present context, emphasises the social origins of impairment; 2) [it] recognises and opposes the social, financial, environmental and psychological disadvantages inflicted on impaired people; 3) [it] sees both (1) and (2) as historical products, not as the results of nature, human or otherwise;  31  4) [it] asserts the value of disabled modes of living, at the same time as it condemns the social production of impairment [through unsafe working conditions for example]; 5) [it] is inevitably a political perspective, in that it involves the defense and transformation, both material and ideological, of state health and welfare provision as an essential condition of transforming the lives of the vast majority of disabled people. (p. 17)  Critique  of  Normalization  As stated previously, after its introduction, the principle of normalization services  became  the  theory  within  to people with intellectual  popularity  which  the  disabilities  majority  operated.  of Its  can be partially attributed to its seeming ability to  identify the disadvantages of people with intellectual disabilities and to provide strategies to change that situation (Chappell, 1992). Another part of its success, however, may lie in the fact that it does so without challenging the established social order.  In fact,  as it will be shown, normalization works to maintain and support that  order  by  forcing  intellectually  disabled  people  to  adjust  themselves and their behaviour in an effort to fit in to society. From a perspective  informed  by  structural  theory  and  the  social  theory of disability, this feature renders normalization inadequate to truly meeting the needs of people with intellectual disabilities (Chappell, 1992). A  significant  difficulty with normalization  perspective  is  its  emphasis  professional  control of services  on  professional  (Chappell, 1992).  from a critical authority  and  Normalization  32 has enabled professionals to retain control of the range, of services for people with intellectual disabilities despite changes in policy and attitudes, for example the deinstitutionalization process, by providing  them  with  Fulcher, 1996). normalization example), disabled  new  model  of  practice  (Chappell,  1992;  As can be seen throughout Wolfensberger's work on  and social  services people  evaluations  a  providers  are  of  role valorization  the  the  are  the  objects.  quality  (1972,  actors  and  Decisions  of  those  1983, 1995 for intellectually  about  services  services are  professionals and not by the people who use the services Smith, 1992; Chappell, 1992).  and  made  by  (Brown &  Normalization presupposes a consensus  between service provider and client as to goals and methods and does not make allowances  for conflicts.  This assumption prevents any  analysis of the power disparities between people with intellectual disabilities and the professionals in their lives (Chappell, 1992). As  the  social  theory  of  disability  informs  us,  this  focus  on  professional control is an example of the hegemony of medicalization and  medical/professional  control  over  the  lives  of  people  with  disabilities. Normalization theory in its emphasis on culturally standards  for appearance, behaviour,  living  normative  situations, etcetera,  assumes that people with intellectual disabilities are a homogeneous group and does not recognize diversity within that group in terms of culture, gender or sexual orientation. diversity  in  the  larger  society  It also does not respect  by maintaining  activities should reflect the dominant culture.  that  normalizing  In this respect,  33 normalization  is conservative  and authoritarian  (Chappell,  1992).  It is also oppressive in that it perpetuates the marginalization of groups such as women, people of colour and lesbian and gay people in the larger society and within the intellectually disabled community as well  (see Brown, 1994; Ferns, 1992; Brown & Smith, 1992) .  culturally  example, in terms of sexual orientation, the standard of normative  behavior  in  normalization  has  resulted  in  For  a  complete  failure to accept any activity other than heterosexual activity and as a result: frequently men with learning disabilities who have sex with men do so without the benefit of safer sex education and even when their behaviour is known about they are not credited with a gay identity. Their behaviour is likely to be kept covert rather than acknowledged as a positive choice. Lesbian relationships and lifestyles are rarely made explicit as an option for women with learning disabilities. (Brown, 1994, p. 136) By  attempting  disabilities  and  normalization  to  normalize  minimize  people  their  serves the current  with  deviancy  intellectual  within  society,  social order by diminishing  the  ability and position of people with mental handicaps to make claims (as  described  Normalization  by  and  activities  1993)  change  involving  only  disabled  roles  (Brown  continues (1992) how  to  question, can  they  against  intellectual  in a collective manner by by  Wolfensberger  associating,  Kerans,  and  stigmatizing  Chappell's  &  practices work against  coming together deviancy  Drover  maintain  that  people  Smith,  (1995a). they  develop  a  disabled  people  are  individual  friendships  serve  1992),  "if  order.  focusing on  suggesting  &  that  to  a  reinforce  position This  that  leads Jto  discouraged  collective  and  response  from to  34 discrimination?" (p.45). and  when  this  The answer, of course, is that they cannot  function  of  normalization  is  combined  with  the  unquestioned power and control exercised by professionals over the lives of intellectually disabled people, it becomes clear that many people  with  intellectual  disabilities  are  not  currently  in-- a  position to articulate claims within society and are dependent upon others to do so on their behalf. As already noted, normalization and social role valorization are  based  on  the  sociological  interactionism (Chappell, 1992). in  identifying  and  theories  of  deviancy  and  While these concepts may be useful  describing  injustices  and  disadvantages  experienced by people with disabilities, normalization's failure to link  them  to  their  structural  antecedents  result  in  the  theory  "never proceed[ing] beyond the level of a descriptive and implicitly justificatory account" (Abberley, 1987, p.14). the  deviance  of  responsibility  for  intellectual change  is  disability  placed  on  the  By tacitly accepting as  natural, . the  individual.  The  intellectually disabled person is to be made more "normal" in order to meet society's standards rather than efforts being directed at changing those structures which do not accommodate a person who is different (Chappell, 1992; Elks, 1994). This perspective also brings to light a contradiction inherent" within normalization  and social  role valorization.  The  theories  accept that deviancy is a natural consequence of disability and that this deviancy  results  in societal marginalization.  In order  to  achieve the goal of normalization, that of societal integration, the  35 theories  support  practices  which  increase  the  appearance  normality and thus.decrease the perception of deviance.  of  However, if  deviance is inexorably tied to disability it cannot be eliminated unless  the  disability  is  eliminated.  Therefore,  people  with  disabilities, no matter how "normalized" they become, will always be deviant and can never be fully integrated.  The best normalization  can then offer people with disabilities then is a type of "second class" standing in society, rather than full and equal membership. From  a  critical  perspective,  this  is  obviously  an  unacceptable  outcome.  Critique  of the Social  Model  The social theory of disability has been criticized within the disabled  academic  community  by  some  as  emphasizing  aspects of the construction of disability idealist (Barnes, 1996; Priestley, 1998).  the  material  at the expense of the  As Tom Shakespeare (1994)  has written: as a consequence of this position, Social Model writers have rejected social psychologists, anthropologists, and even feminists, all on the basis that such theorizations are 'idealist' , and fail to pay attention to material processes and social relations. I would support any argument which suggests that it is vital to consider material relations: a theoretical explanation which neglects the disabling role of society, which ignores socio-economic structures, is a mere fantasy. However, I would equally suggest that mono-linear explanations, reducing everything to economic factors, are misguided, (p. 289) Shakespeare goes on to identify cultural representations of disabled people as 'other' and 'abnormal' as being expressions of prejudice  36 against  them and  people's  that  this prejudice  fear of impairment.  arises  out of  non-disabled  It is this fear which creates the  prejudice which then combines with material conditions to create the disability.  oppression of  Other researchers have also written on the limitations of the exclusively materialist viewpoint, primarily regarding its disregard for the personal and individual experiences of different groups of disabled people (Keith, 1992; Morris, 1991).  As a disabled feminist  researcher, Jenny Morris has made efforts to bring these experiences to light and to incorporate them into the social model (1993, 1995). Her work has also encouraged a more pluralistic and inclusive trend within  disability  theorizing  by  emphasizing  the  experiences  of  disabled women and pointing out the marginalization of women within the movement. extent  Barton  to which  gay,  (1993) has pointed lesbian, and black  out as well disabled  that "the  individuals  groups feel represented . . . has not been adequately addressed" 238).  Part  of  this  resistance  to  'identity  politics'  or (p.  within  disability theorizing seems to revolve around a fear that the social model will be weakened in its presentation to the non-disabled world if it attempts to follow a more postmodernist path and incorporate all the variations of disability experience  (Shakespeare & Watson,  1997). Much of this tension regarding individual experiences arises out of a difficulty with the concept of impairment Hughes & Paterson, 1997; Wendell', 1996) .  (Crow, 1996;  The materialist approach  emphasizes the construction of disability by disabling barriers and  .37 attitudes in society and tends to regard impairment as a difference which can be rendered at least neutral, if not meaningless, by the removal  of  however,  these  question  barriers. this  Writers  portrayal  of  such  as  Liz  impairment  Crow  and  impairment is central to the experience of disability.  (1996),  insist  that  The concern  seems to be that to admit to being in pain or being fatigued, for example, will open the door to a return to the medical tradition which  will  personalize  and  pathologize  social features of disability.  without  recognizing  the  For Crow, though, this is not an  inevitable result of recognizing the reality of impairment and the consequences of not recognizing it are far more dire: ...by refusing to discuss impairment, we are failing to acknowledge the subjective reality of many disabled people's daily lives. Impairment is problematic for people who experience pain, illness, shortened lifespan or other factors. As a result, they may seek treatment to minimise these . consequences and, in extreme circumstances, may no longer wish to live. It is vital not to assume they are experiencing a kind of 'false consciousness' - that if all the external disabling barriers were removed they would no longer feel like this. .(p. 217)  This minimization of impairment makes the strictly materialist perspective . problematic disabilities  as well  with  regards  (Ferguson,  to people  1990) .  with  Intellectual  intellectual impairment,  especially severe impairment, exists in an absolute sense and people who have intellectual impairments would still be in a disadvantaged position removed  even  if  tomorrow.  constructivist  all  barriers  As  position  to  Ferguson in  their writes,  disability  full  participation  "the  studies  examples where culture seems beside the point;  weakness emerges  of at  were the those  where physiology has  38  gone so far awry that it threatens to overwhelm the social context" (1990 p.207). . The  Severe intellectual impairment cannot be made benign.  social  model  of  disability  was  developed  for  disabled  people by disabled people in the belief that it is only through self advocacy  that  change  will  occur.  For  people  with  intellectual  disabilities, however', a considerable amount of advocacy will always be performed by non-disabled people on their behalf. source  of  much  marginalization  unease of  and  may  intellectual  also  partially  disability  in  This discomfort is made explicit in Watson's  This is the explain  disability  the  theory.  (1996) discussion on  the absence of intellectual disability in critical sociology when he says:  ....... a key component of the critical impulse is the desire to avoid a paternalistic relation to disadvantaged and oppressed subjects through an insistence that critical social science elaborates the existing political speech of disadvantaged and oppressed subjects and does not simply speak for them, but very cognitively disabled people cannot speak for themselves, (p. 232)  Watson  refuses  to  shy  away  from  this  potentially  immobilizing  conflict and suggests that researchers accept the risk and take on an  "ethic  of  caring"  (p.  246)  which  allows  us  to  examine  the  oppression of intellectually disabled people because it is the right thing to do.  Discussion The  use  of  the principle  of normalization  in  services  for  people with intellectual disabilities has allowed people to identify  39  the inhumane treatment and injustices that intellectually disabled people  have  practical  been  subjected  alternative  to  to  historically  them.  It  has  and been  has  provided  largely  a  due. .to  normalization theory that people have come to see the institution and extended  care ward  as inappropriate  and  stifling  people with intellectual disabilities to live.  places  for  Normalization has  also brought an idealistic vision to services, promoting the idea that people with intellectual disabilities can learn and can become integrated into society rather than hover at its margins. of  the  influence  of  normalization,  people  with  Because  intellectual  disabilities are visible again in the community, not kept behind locked doors. Normalization,  however,  has  some  very  serious  especially when viewed from a critical perspective.  limitations, Normalization  and its more recent form, social role valorization, ultimately serve the dominant first  seem  social order and are not as transformative  to be.  The  theories  are  rooted  in  the  as they  ideological  hegemony of individual deficiency and medicalization which interpret the difficulties associated with disabilities as personal pathology which require treatment and correction.  Normalization perpetuates  professional power over people with intellectual disabilities and blocks  opportunities  for  individuals  claims for their rights in society. significant integrate  weakness  people  with  in  to  together  and  make  In the final analysis, the most  normalization  intellectual  come  may  be  disabilities  its into  attempt a  to  society  which, by normalization's own definition, will never accept them.  40 The social theory of disability, on the other hand, provides a critical structural analysis of the construction and oppression of disability  and disabled  people.  It  is similar  to  normalization  theory in that it seeks to identify and analyze the marginalizing aspects of disability but does so from a material perspective and finds that ideology and economics create marginalization rather than disability and deviance.  Both theories also include strategies for  changing the current situation disabled people struggle within, but while  normalization  change  in  order  to  focuses adjust  on  professionally  to  society,  the  dictated social  personal theory  of  disability looks to activism within the disabled community to change the  social  order  which  oppresses  it.  In  the  social  theory  of  disability, social and political action are seen the primary methods to bring about transformative change.  Finally, both theories claim  to exist for the betterment and improvement of the lives of disabled people.  Normalization, however, makes this claim on the basis of  determinations  of  improvement  made  by  professionals  rather  than  those with intellectual disabilities and their advocates while the social theory of disability is grounded in the lived experience of people with disabilities and holds that self determination and full citizenship are the most important claims disabled people can make.  41  Research  Orientation  Introduction The history disabilities disability center.  of research  has  and  generally  has  had  concerning people with been  the  focussed  concerns  Disability ' rights  of  activist  on  the  intellectual ^problem'  the professional  researchers  at  challenge  of its this  professional domination of research goals and call for disability research  which  disabilities  is  and  based that  upon  the  benefits  experience  people  with  of  people  with  disabilities  (for  example, Barnes, 1992; Morris, 1992; Oliver, 1992; Ward 1994; Zarb, 1992) . experiences  of  As Taylor  people  & Flynn,  (1996) says, "the perspectives and  labeled  mentally  retarded  must  provide  a  starting point for all research and inquiries in the study of mental retardation"  (p. 7 ) .  There  is very  little  research which does,  however, and this may be attributed to a generalized belief that people  with  intellectual  disabilities  "lack  the  capacities  to  provide coherent reconstructions of their life experience" (Turner, 1980  p.3).  In  some  situations,  people  with  intellectual  disabilities may have difficulties being articulate, but this is by no means is an excuse to dismiss their views (Taylor, 1996). (1996), Booth & Booth use  of  narrative  articulate  and  (1996), and Goodley  techniques  provide  with  people  suggestions  and  Booth  (1996) all describe the who  are  guidelines  not on  extremely how  the  researcher can assist in bringing peoples' stories out.  The value  in  insider's  this  kind  of  research  is  that  "reinforcing  the  42  subjective  understandings  of  their  [sic]  own  position  prompts  readers to challenge their own (often generalized) understandings of the tellers.  In short our own  'truths' are quickly challenged by  the personal narrative" (Goodley, 1996 p. 335). My goal is to bring to light the experiences and' concerns of people with intellectual disabilities for much the same purpose.  I wish to act upon Tyne's  (1994) vision of citizen advocacy: some kinds of advocacy will clearly be about being a "spokesperson". , Perhaps the person literally has no voice, or no language. Representing their interest may need an interpreter, or someone who can spend long hours discerning their intent. Perhaps the person has a voice, but it is drowned by dominant people who surround them with overbearing concerns. (p. 251)  Rather  than  being  a  spokesperson  for  people  with  intellectual  disabilities, I would prefer to "serve them by providing a wider 'audience' for these subjugated and marginalised stories"  (Gillman  et al, 1997 p. 692). As  well,  as  was  discussed  previously,  the  emerging  social  theory of disability attempts to describe the social constructedness of disability and views disability from a rights perspective. Most of the research discussed which establishes disability'"as a social issue, however, has done  so from the perspective  of people with  primarily physical disabilities without specific recognition of the experiences of people with intellectual disabilities. purpose  of this  study is to help add the voices  Part of the  of people  intellectual disabilities to the chorus calling for change.  with  43  Ethical  Issues: The ability to give informed consent is a concern with people  with intellectual disabilities  (Stalker, 1998; Swain et al, 1998).  In part, this was dealt with by selecting subjects who were legally able to give consent (i.e. have not been declared incompetent).  All  of the people involved in the study were able to clearly indicate their choice as to whether or not they wished to participate. also obtained approval for this study by the agency the self advocacy committee.  I had  which sponsors  In addition, some of the people in  this group have been involved in research activities in the past and had some experience on which to base their decision.  Care was taken  to explain the process thoroughly in plain language to ensure that each participant understood what was being asked of her. the  consent  letter which  each participant  As well,  signed was written  plain language and was discussed at length with each person  in (see  appendices 1 and 3 ) . Another problematic which  factor was  the  in  obtaining  issue  of  valid  trained  consent  compliance  is a feature which may be present  among  which or  was  more  acquiescence  some people  with  intellectual disabilities, especially in regards to requests made by non-disabled authority figures (Sigelman et al, 1981; Sobsey, 1994). Again, because advocacy,  participants  from a group  involved  in  this was less of a concern than it would have been with  other people. emphasizing  I selected  I attempted to minimize this potential problem by  that participation  was  completely  voluntary  and  that  44 there  would  be  no  negative  consequence  for  choosing  not  to  participate. In their discussion  of ethics  regarding  this  type of open-  ended interviewing with people with intellectual disabilities, Swain et al  (1998)  identify possible  sources  of harm  to participants.  Among these, they list a lack of respect towards the participant, especially encourage  in  terms  of  manipulation  disclosure  of  personal  during  the  information)  interview  and  in  the  (to data  analysis (by not respecting the voice or wishes of the participant). Another issue raised is that of a potentially dangerous relationship developing between researcher and respondent. "to  conduct  research, of  people's lives.  this  nature  is  As Swain et al write,  to  become  involved  in  The involvement may be peripheral as far as the  researcher  is  concerned,  viewpoint"  (p. 31) .  but may  not  be  from  the  participant's  Swain et al suggest that there are no easy or  concrete solutions to these potential sources of harm.  What they do  recommend, however, is an on-going ethical review process through the entire course of the research. "ethical  principles  and  A process that recognizes that  obligations  are  interpreted,  and  take  particular manifestations within specific contexts and between the particular people involved" (p.34). The primary concern I had in terms of the ethics of my data collection technique was that of the power relationship'between the people I wished to interview and myself. but a staff member with the Society  Being not only able-bodied  (although not directly  with  these individuals), I was concerned that the people I interviewed  45 would not be comfortable enough or feel safe enough to express what they truly wish to say.  While I had some concerns regarding one  interview respondent, in the end, however, I do not believe that this was an overwhelming problem, especially with the focus group. The group clearly had its own agenda and seemed to appreciate the opportunity to make its views clear. of  the  participants  negative  comments  was about  the  The only concern on the part  possibility  social  of  workers.  offending Their  me  with  hesitation  disappeared when I made it clear that this was exactly the type of information I was looking for. Another concern I had with this type of interpretive approach is  that  it  may  emancipatory.  not  be  considered  particularly  empowering  or  There is considerable literature in the disability  rights field condemning research which does nothing to~improve the social position of people with disabilities and merely fulfils the researcher's and/or the dominant culture's needs (see Barnes, 1992; Oliver, 1990, 1992; Morris, 1992; Stone 1992).  & Priestley,  1996; Zarb,  Much of the criticism of interpretive types of research,  however, comes from the proponents of a strictly materialist model of disability theorizing (as discussed previously). from a more  Others, writing  feminist perspective, make it clear that it is only  through the expression of disabled peoples' experiences that changes to a disabling society can begin to occur (see Barton, 1993; Morris, 1991;  Shakespeare,  1994;  Taylor,  1996).  Regarding  intellectual disabilities in particular, Booth justification:  people  with  (1996) provides this  46  the 'excluded voice thesis' postulates that narrative methods provide access to the perspectives and experience of oppressed groups who lack the power to make their voices heard through traditional modes of academic discourse, (p. 237) It is from this position that I orient myself and my research.  Validity/Credibility Maxwell credibility  Issues:  (1996) of  defines a  validity  description,  as  "the  correctness  conclusion,  interpretation, or other sort of account"  or  explanation,  (p. 87) .  He goes on to  state that there are three ways of understanding research and that each is susceptible to particular problems or  threats  which place  results in question: description, interpretation and theory.  The  validity of the data's description can be threatened by inadequate recording of the data collection process which renders suspect the conclusions drawn from the data.  The interpretation of the data can  be threatened by the imposition of the researcher's own beliefs over that of the participants'. challenged  by  the  Finally, theoretical validity  researcher's  avoidance  of  conflicting  can be data  or  alternative explanations. For my research, the most problematic area has been in the interpretation  of the data.  My  study  is highly  interpretive  in  nature and I have been concerned throughout the process that I may have over-interpreted some of the data, in the interview narratives in particular, and  Franklin's specifically. My intention in this  study was to give voice to the issues the respondents had and not to  47 'psychologize' and pathologize them (as has historically been done). Yet, despite my discomfort, I believe my interpretations are valid and that the narratives I selected provide clear examples of how the identity of 'intellectually disabled' can construct a life. In terms of other validity threats, I incorporated a number of  techniques  credibility interviews  of  (as  discussed  my  results.  in  Maxwell,  1996)  to  ensure  the  In  addition  to  audio  taping  the  (and video taping the focus group), I made a point to  make written notes as well. Also, I had feedback sessions with the informants to check the videotape for accuracy in order to develop an  accurate  description  of  the  proceedings.  As  well,  the  proceedings of the focus group and the individual interviews were transcribed verbatim prior to their analysis. In order to ensure the validity of my analysis, I performed member  checks with  meeting.  the  focus  group  after  the  initial  discussion  I have presented my preliminary findings to the informants  and asked them to critique the analysis so as to make sure it was congruent with their attitudes. I have engaged in the process of peer debriefing the course of this study. social  work  throughout  I have discussed my work with  students, co-workers  and  disability  activists  fellow in  an  effort to ensure my research is respectful, valid and logically laid out. Finally,  I feel I can make a reasonable claim for credibility  for my study in terms of researcher involvement in the area being studied.  I have worked with people with intellectual disabilities  for many years in a variety of settings and capacities. does  not  give  me  the  right  to  claim  insight  into  While this or  special  knowledge about the experience of intellectual disability,  I feel  that my work and commitment to empowering people with disabilities does give me the ability to listen and begin to understand their issues and demands.  49  Methodology Focus  Group  Introduction Focus groups were developed primarily by market researchers to gain  information  on  how  products  and  services  are  perceived  by  consumers, but have grown in popularity with social scientists and other researchers in recent years  (Krueger, 1994).  A focus group  "is a carefully planned discussion designed to obtain perceptions on a  defined  area  of  interest  in  a  permissive,  non-threatening  atmosphere" (Krueger, 1994 p. 6 ) . They generally use semistructured discussion methods and, although they may also provide some level of personal  support  to the participants, that  purpose (Carey, 1994).  is not their  express  The group aspect provides an opportunity for  fuller exploration of the topic from a variety of sources. groups  are used  reasons,  but  by  social  Carey  particularly  useful  populations,  which  science  (1994) for  is  "need  largely  researchers  suggests  that  assessment[s]" what  I have  Focus  for  a variety  of  focus  groups  are  (p.  tried  227) to  with  do with  new my  research. Although my  original  intention  in this  study was  to use a  focus group format as described in Krueger (1994), I now hesitate to call what transpired a focus group in the usual sense of the term. The number of people who wished to participate was quite surprising to me and as a result the group was larger than is generally found in most  focus groups  (Carey,  1994, for example, recommends  5-12  50 participants) .  I allowed this because, in my attempt to make this  research relevant and empowering for the participants, I felt that their  wish  that  the  group  I  also  felt  respected.  as that  a  whole it  participate  would  be  should  be  difficult  and  discriminatory to select some and not others when the enthusiasm and support for this study in the group was so high. this is an exploratory  As well, because  study, I decided that gaining  information  from as diverse a group as possible was of particular importance. Another  diversion  from  tradition  was  original discussion guide (appendix B) .  in  my  departure  from  my  It became evident early on  in the discussion that I simply was not asking the right questions of the group, as they had their own agenda and their own issues-to bring forward.  Rather than spending the session attempting to drag  the group back to my agenda, I quickly decided to defer to them as the experts and follow their lead.  As Kreuger (1994) notes, a focus  group method is adaptable, but it is not infinitely malleable.  As a  result of these departures from standard procedure, and for reasons discussed below, I would almost prefer  to consider  group interview rather than a focus group.  this  study a  •- •  I chose a group model rather than individual interviews for the initial, exploratory study for several reasons, most of which relate to my desire to create an environment  as comfortable  and  conducive to discussion with people with intellectual disabilities as possible. Rather than make people with intellectual disabilities work to fit into non-disabled structures and procedures, procedures-  51 need to be changed to reflect those with disabilities.  the experiences  and  capacities  of  Ippoliti et al. (1994) maintain that:  there is . ... evidence to support the design of structured, nurturing settings for persons with learning difficulties as a most effective way of promoting their capacity to competently participate in planning and decision making. In light of the research, it not only seems worthwhile to further explore the use of similarly well organized, safe settings for people to identify and articulate their own preferences and needs, but seems essential as an acknowledgement of their right to self determination, (p. 455)  Focus groups with people with intellectual disabilities have been used by other researchers  (for example Di Terlizzi, 1997) and  found to be effective with certain modifications to make the process more comfortable and inclusive, especially speak or have  limited verbal abilities.  for people who do not Ippoliti  et al.  (1994)  report that:  the focus group methods serve dual purposes which are of great value to professionals and consumers alike: they provide a structured forum in which persons with disabilities can articulate their own ideas and also provide an arena from which data can systematically be collected and then subjected to formal analysis, (p. 460)  Other reasons I chose to interview a pre-existing group have to do with  communication.  The  self-advocates  in this group are  experienced with issues of advocacy and are committed to speaking for themselves.  . This  people  intellectual  with  inarticulateness Booth & Booth  is especially  which may  important  disabilities,  describe  for  research  because-  some people  of  so labeled.  with the As  (1996) describe it, it is the inability to use words  52 in a fluent manner which is due in part to limited language skills, "but  is generally  self-esteem,  overlaid by other  learned  habits  of  factors  including  compliance,  social  a lack of  isolation  or  loneliness and the experience of oppression" (p. 56). As members of an established group,* there was a higher level of comfort between the participants  than there would  formed for this study.  have been  if a new  group was  This was important in order to ensure the  involvement of all participants in the research process. advantage  (for me as the researcher)  in this  Another  situation was  that  group members, because of their familiarity with each other, were able to assist me with individuals whose speech and communication method I had difficulty understanding.  In primarily (1996) .  analyzing  the  a meaning  text  of  the  categorization  discussion, method  as  I  chose  described  to in  Kvale  The initial categories came after repeated readings of ...the  text and sub categories were isolated from the main categories. have  use  also made  an  effort  to  not  decontextualize  statements  I and  stories excessively, so as to maintain the narrative quality of some of the stories (or more accurately, vignettes) I was told as well as the flow of the discussion process.  Sample A  group  intellectually  consisting disabled  was  of self  18  people  selected  self from the  committee of a local Society for Community Living.  identified  as  self-advocacy The group was  53  made up of 12 men and 6 women and their ages ranged from 25 to 58 years old with the median age being 46 years old. 13 people lived independently in the community  Of the members,  (including one man  who lived with his wife and child), 2 lived in group homes, 2 lived with family (parents or siblings) and 1 lived in a proprietary care arrangement. While  the group was  culture  (the majority  diverse  in  previously  terms lived  homogeneous  if participants were white),  of in  fairly  life  experience.  institutions  or  Some  group  in terms it was  fairly  participants  homes  before  of  had  living  independently whereas others had always lived in the community. Some had gone to exclusively segregated schools while others had attended integrated programs. sheltered  Others had spent many of their adult years in  vocational/training  programs  while  some  members  had  competitive employment, either currently or at one time. The discussion session lasted for 1 % hours and was videotaped as well as audiotaped.  The audiotapes were transcribed and checked  against the videotape for accuracy.  Since a number of people in the  group did not read, the group decided that they would prefer to review  the  videotape  rather  than  the  written  preliminary results and analysis of the findings  transcripts.  The  (in the form of a  poster presentation) were also reviewed by the group and found to be accurate.  The final version of this study was presented to the  group, as well as a plain language summary, and further plans for its distribution and publication have been discussed.  54  Interview  Narratives  Introduction For the individual analysis  interviews, I used a narrative  and presentation.  My interest  style of  in a narrative  approach  developed while I was analyzing the data from the preliminary study. The  participants  frequently  used  stories  to  illustrate  the  development of their opinions and beliefs and I often felt I was doing these stories a disservice by reducing them to phrases and 'codes'.  I used the information from the interviews to  discover  the issues and motifs which are important to the informants, not to confirm my own beliefs and hypothesis.  This  choice  of analytic  method also reflects my desire to dispel the myths about people with intellectual disabilities being unable to understand and discuss the issues which affect them. My  analytic  method  falls  under  the  broad  heading  phenomenological inquiry, in that I am studying a phenomenon  of  (life  with an intellectual disability) and that I am doing so in order to begin  to  understand " the  (Creswell, 1998).  experience  and  its  underlying  essence  According to Creswell (1998), phenomenology is:  a return to the traditional is, "a search for wisdom".  tasks  of philosophy  - that  a philosophy without presuppositions - the researcher "brackets" her judgments and takes her meanings from the data. accepts the intentionality of consciousness and refutes the subject-object dichotomy - objects exist only as they are perceived and that perception occurs within the experiences of an individual, (pp 52-53)  -55  The work of the phenomenological researcher begins from the first interview  as  she  sets  about  to  immerse  herself  in  them to their  the  data  essential  to  discover the  themes and reduce  nature  (Tesch, 1990) .  Through this "dialoguing with the data" (Tesch, 1990  p. 93), the researcher can arrive at interpretations which then give the  reader  an  understanding  of  the  lived  experiences  of  the  respondents (Creswell, 1998). In my reading on this subject, I was struck by the diversity of approaches which fall under the label of narrative analysis. From rambling  life histories to highly  narrative  techniques  territory  for  categorizations writing  a  run novice  the  structured  gamut.  to  of styles which  As  linguistic accounts,  such,  navigate,  but  it  is  there  I found helpful.  from a life history orientation, describes  difficult are  Booth  some (1996),  five types of  narratives: autobiography  - self authored accounts,  reminiscences  - recollections of particular events,  life  review  life  story  - an evaluation of one's experiences, - as described to a writer, and  life history - a life story augmented by information from other sources. Mishler  (1995), on the other hand, breaks narrative analyses into  three groups: reference - which emphasizes events in a particular order, structure - which language used, and  the  investigates  representation  the  story  text  of  and  56  function  - which studies the purpose of stories.  However particular are useful  techniques  in research  (1996) , narratives  lives""1  (p.  theoretical  us  a  reasons.  glimpse  narrative According  inside  an  They  by  also  showing  provide  the  accounts provide an alternative  Riessman,  to Booth  individual  lived  a  'reality  check'  experience.  "by  to depersonalized  narratives  are  "useful  for  what  for  Narrative  and generalized  studies by keeping the individual as the primary focus. to  accounts  'expert witnesses' in the matter of their own  239).  ideas  categorized,  for several  give  treating people as  are  they  According  reveal  about  social life - culture 'speaks itself through an individual's story" (1993 p . 5 ) . The highest purpose of the narrative, however, may be the feeling and ultimately, understanding it invokes in the reader. As Goodley says: We understand an official document intellectually, yet the human document is comprehended emotionally. Empathy accompanies insight - we know another's life because we feel it. As the informal, anecdotal and personalised elements of a story are internalised, then I would argue that these very qualities provide a direct route to social understanding. (1996 p. 335)  It  is my  intention  that more  "social  understanding"  comes  as a  result of this study. I have  chosen to  model of analysis  follow a derivation  of the  Labov/Waletzky  (1967, cited in Mishler, 1986a) as discussed and  refined by Mishler (1986a, 1986b) and as followed by O'Neill According to Mishler  (1995).  (1986a), a narrative "contains the sequence of  socially meaningful acts without which it would not be a story" (p.  57 241) .  These stories are made up of components which can be broken  down in the following manner (Mishler, 1986b): orientation - the description of the time and place of the event, abstract - a summary of events, complicating narrative,  action  or  plot  -  the  action  of  the  resolution - the consequences of the actions, coda - the final evaluation. After repeated readings of the interview transcripts, I found what I consider to be the key stories or core narratives in each interview. These  stories  were  broken  down  into  their  basic  elements  (orientation, abstract, plot, resolution and coda) and they serve as the 'thumbnail sketches' for the larger narrative. narratives, additional  I  identified  material  from  the the  key  Using these core  issues  in  each  and  interviews  to  elaborate  then  used  on  these  themes.  Sampl e I selected four people from the original focus group for the individual  interviews.  I did  this deliberately  and  for  reasons  similar to those I used when selecting the focus group participants. Because of the time and resource constraints on my research, I could only do one interview with each person.  I decided that, in order to  maximize the effectiveness of the interviews, it was preferable to interview people who were already familiar with me and my research.  58 The  four people  sixty years old. the  local  I interviewed  ranged  in age  Two were women and two were men.  regional  institution  for  people  from  forty  to  Two had lived in  with  intellectual  disabilities as teenagers while the other two had always lived in the community.  I selected  them  specifically  for gender  and for  having lived in an institution or not in order to ensure that those experiences were represented. At the time of the interviews, all were living independently in their communities in rented apartments with little if any paid support staff directly involved in their lives. The  interviews  minutes.  ranged  in  length  from  forty-five  to  ninety  They took place in the participants' homes or in local  restaurants.  The interviews were audio-taped and transcribed by a  professional typist.  I built my interview guide  (see appendices 2  and 4) from the information I was given during.the focus group.  The  themes  the  and  issues  raised by  the group participants  provided  general guidelines for the interviews, but I did not use them in a 'question and answer' format; they functioned more as prompts in situations where the interviews slowed down. For the most part, the interviews were unstructured.  I began  each of them by briefly going over the highlights of the focus group discussion and then asking the participants if they would elaborate on the issues and experiences that were important to them.  I then  left it to the individuals to decide which issues they wanted to discuss. covered,  In  some  in others  cases, many the  different  discussion  areas  was more  of  concern  focussed.;  were  In Bob/s  59 interview, for example, I referred back to the interview guide several times in an attempt to move the interview along when I thought a topic had been sufficiently discussed.  Bob, on the other  hand, made it clear he had not finished with a particular topic and always brought the discussion back to it.  60  Findings Focus  Group  Issues: NOTE:  Comments in [] are mine for the sake of clarification.  Employment  and the difficulty  finding  significant concerns among the respondents.  competitive  jobs were  Everyone in the group  indicated that they would prefer to have "real jobs"  rather than  sheltered vocational programs or, for some, continued unemployment. Many group members talked about discrimination in the labour market as a reason for their lack of employment. Miles: My experience, too, that I being a janitor and he didn't look he talked to me. He never looked said he didn't need me. He didn't when he was talking-to me.  applied for a job into my eyes when at me and then he really look at me  Tina: So, you think he didn't really look at you because you have a disability? Miles:  Yes.  That was a long time ago.  Another member had this comment on the situation: I would like to see employers, you know, like the people who hire people to work in different companies, to hire more people with disabilities. Because right now, there is that big barrier in the way of, you know, they just look at us, because they just look at our disabilities, they don't look at us as people... The  problems  faced  by  intellectually  workforce were summed up in this way:  disabled  people  in  the  61 Tracey: It's tough competition out there for people who don't have a disability looking for work and people who have a disability and they are looking for work and it's a vicious cycle. Lisa: And the people who don't have the disability get the job Tracey: don't.  The income  and  discussion support  the  about  programs  people  who  employment people  have  led  used  the  to and  disability  comments their  about  the  difficulties  reconciling the two: Right now people are kind of afraid to look for [a job], either they don't get hired because they have a disability or, if they get hired, they are afraid they will make too much money and then it screws up their [welfare] cheque. Because that's the way it is right now. You are only allowed to make so much over your cheque and then they take it off you. Many people cited a need to have an income support program which did not penalize people for having part-time or casual work and that recognized  that  people  with  disabilities  often  have  additional  expenses related to their disabilities: ...they don't realize that that people with disabilities, they have extra needs, some may have more needs that others. Some may have high medical needs, they might need special diet and they [policy makers] don't take that into consideration... Others in the group felt the current rates for income support were inadequate.  One respondent put it quite succinctly when he said,  everything else goes up but our' cheque didn't go up, yeah. While  the  word  poverty  was  not  used  by  the  participants,  the  implication was clear when others discussed the effects of small  62 rent increases and the cost of non-prescription  (and therefore, not  covered through medical benefits) medications such as cough syrup. Robert: but then you have to pay for the rent out of our own money at the time because some people pay $30 more if they move out at the time and then someone new moves in at the time. Tina: So a small rent increase or something can mean the difference between whether' or not you can stay in that apartment anymore? Several people:  yes, right, that's true,  One participant made this observation on the state of his finances: ...but most of us are living on our own. We're paying everything out of our pocket. And what are we left with? Nothing...  The discussion then segued into tales of experiences with the bureaucracy and social workers and financial assistance workers in particular.  As a social worker, I was quite distressed  to hear  stories of denial of services, paperwork jungles and accusations of dishonesty: Elizabeth: Sometimes I get into trouble with [ministry responsible for income support], sometimes they don't believe us, we are handicapped, [murmurs of agreement from the group] I went to [the ministry] I used to have a fellow and I told him "I'm handicapped and I can't read," he said "I don't believe you" really.... Jon: Tina:  isn't that something? Does that happen to other people?  Others: Yes, yes.  Another woman's comments about similar experiences reveals a lack of understanding of and support for her disability:  63  they say I'm lying, that's what they tell me, and that really hurts deep down. I know I can't keep my story straight, but they shouldn't say I'm a liar. Many of the participants  had  ideas and  suggestions  on what  could be done to address these problems.  One man suggested that  more  be  information  language  formats.  on  services  and  rights  Several members mentioned  for social workers and financial workers.  available  in  sensitivity  plain  training  Another man felt that  training regarding disability issues should be part of social work education: ... part of it should be taught at the teaching level, like where [the interviewer] is now. Like we should actually get some part of a course where they take people like us and learn to work with them... At  several  times  during  the  discussion,  I brought  up  the  subject of support in- an effort to gauge the members' feelings and desires on the types of support they received.  For the most part,  little mention of paid support workers was made, except in terms of specific tasks such as finding employment.  Most of the support the  participants identified came from family and from peers: Jon: Well, Bob • and myself and Tracy and Billy were on the [provincial community living association] self-advocacy caucus and we kind of support each other with different things. Tina:  So, you guys sort of help each other a lot?  Others: Yeah. Jon:  And as well as our self-advocacy group here.  A major theme among the members of this group was a concern about safety and violence in their lives.  All of the participants  identified issues about safety at home and in the community:  64  Tina:  Is safety a concern for people?  Lisa: Yeah. Like say if you're walking by yourself make sure you are in a lighted area. Tina: Do people community? Lisa:  feel unsafe when you are in the  Yeah, all the time.  Several people shared stories of sexual and physical violence and also identified a lack of support as a compounding factor in their experiences: Jon: I was one time sexually abused in a private boarding school and when I left the boarding school I was 16 and I thought it was over. I was learning a lot through the history [of that school] that came opened and unleashed a lot of emotional side effects about my being abused. I went through a survivors group, but then it's not, like, good enough because you have to be put on a waiting list for [other programs] . What we need to have is ... a survivors' group for those who have been physically, sexually and emotionally abused. Tina: Jon:  For people with disabilities in particular? Pight.  Many of the respondents related incidents of violence or threatened violence they had experienced.  The perpetrators were caregivers,  family members, schoolmates and strangers: ...When I was younger, my brother-in-law tried to rape me and at the time there was only the police officers, there weren't any lady cops, and they just laughed it off; they thought I was asking for it. OK, One night I was waiting at the bus stop. I was by myself and two kids came up and started throwing stuff and spitting at me and I had a good friend across the street. She walked over to the phone booth and phoned the RCMP. I'm a smart fellow.  65 There were many more stories of this type told.  It was clear that  violence and the threat of violence is an ever-present issue in the lives of the participants.  One man summed up this feeling when he  said, sometimes you're just scared to go out, you know? Another theme which became apparent in the discussion was one of too little control over certain aspects of life. example,  came  up  several  difficulties with.  times  as  an  issue  Housing, for  which  people  had  One man explained his situation, with help from  a support staff: Staff: Richard lives with caregivers and they sort of move around and now, you' re worried about what? They don't have enough buses at night? Richard:  No, not enough buses.  Staff: They move, he doesn't choose where he goes and he ended up some place where there is no bus service. Right, Richard? Richard:  For  people  who  Yeah, yeah.  may  require  more  support  with  daily  living  activities, the ability to make decisions about major issues may be limited.  A solution to this situation was mentioned by one of the  participants, when we get our own separate system in place, we will get the services we need. We can hire the people we want to hire, not the people the government wants to hire for us. This is a reference to individualized been  suggested  for  many  years  as  a  funding schemes which have way  putting  people  disabilities in control of their services and their lives.  with  66  Through out the discussion, an overriding theme was evident; a demand for respect. employment  and  This was apparent during the discussions on  discrimination,  violence and self-determination.  problems  with  the  bureaucracy,  It was also stated clearly and  unequivocally at many times:  Treated like a person, not a piece of dirt, right.  Treat us with respect.  That's the way I feel. The whole system lets you down. They don't treat anyone with respect...  When I .asked what it would look like to be treated with respect by a social worker, a woman had this .to say: That would look like, OK, that means that they • totally won't think of your disability anymore. They will think of you as a person. They will sit down with you and say, "Well, Tracey, what do you need in your- life and how do you like them?" and stuff like that. You know, treat you like a person.  The implication of this statement is that this is not the usual course  of  events  when  important ramifications  meeting  with  a  social  worker,  which  has  for the quality of services delivered and  the profession.  Comments : It is evident  from the analysis  of the discussion  understanding of the social constructedness within the group.  of disability  that  an  existed  Without using those words, the participants made  67 it clear that they were aware that the difficulties they face as people with disabilities were due, in large part, to other peoples' attitudes about disability and government programs and policies that are disabling and not an inherent condition of their disabilities. The  statements  made  about  inadequate  income  support,  government  workers  and  discrimination violence  others  show  in  and the  the  lack  labour  of  market,  respect  consciousness  from  that  their  the  group  problems are in fact examples of oppression. There expressed.  was  also  a  sense  of  entitlement  which  This group did not have any difficulties making claims  (as discussed earlier) against the state and society in general in terms of rights and support services, for example, income support. As well,, some members  of the group also  felt that the right to  control those services was theirs to claim.  This is an important  consideration for policy makers and service providers.  Policies and  programs which are developed without the involvement of people with disabilities are becoming less acceptable to them.  Several people  in this group are also involved' in larger advocacy organizations and are actively demanding a role and a voice in the establishment of policies and programs that affect them. The group interview method also afforded the opportunity for me to witness and document the power of associations between people with intellectual disabilities.  The group sense in the discussion  session was very strong and I feel that it was only because of this cohesion  and  sense  of  information I received.  mutual  support  that  I  was  given  the  This is especially true regarding the very  68 personal stories of abuse and fear I heard.  I feel that it is, -in  part, through the group process that these individuals were able to have  come  to  the  point  where  they  could  so  clearly  unhesitatingly tell me what their issues and complaints were. supports  Chappell's  (1992)  contention  that  it  is  and This  through  associations that people with intellectual disabilities can organize to make claims.  69  Interview Narratives The interviews the following narratives were taken from were each  disparate  and at the same  time,  strikingly  similar.  The  interviews were unique in that, obviously, each person had his or her  own stories  to tell  and each  participant  had a  singular  perspective on what it is to live with an intellectual disability. Yet,  despite  concerns.  the differences,  each  respondent  expressed  similar  Although each example was distinct, all the participants  told me stories of abuse they had experienced.  Tracey's complaint  that she felt a lack of respect when dealing with social service workers is, in my mind, a variation on the same theme Bob raised when  describing  how social  workers  failed  to help  alternative to his abusive living situation. and Franklin had very different  him find an  As well, while Janey  feelings on their experiences of  life in the institution, both stories showed how significant those years were (and still are) to them. I have included the line numbers from the original interview texts  to indicate  comments continuous  were  at what  made.  sections  point  In some of text.  in the discussion  cases,  parts  of the interview.  particular  because  the narratives  In others,  'construct' the narrative, taking bits  however,  and pieces  This was the case  of the repetitive  particular  nature  from  in Bob's  were I  in  had to  different story, in  of the interview;  details about his specific narrative were scattered through out the interview.  70  I have gone to great lengths in the process of organizing and interpreting these narratives to not over analyze or ^psychologize' them.  Part of my goal in bringing these stories forward has been to  let the words of the participants stand for themselves as much as possible, for I believe that their words are more powerful than mine could ever be.  71  Bob Bob is a forty-eight year old single man with an intellectual disability who lives independently in an apartment he shares with a room-mate and his pet bird.  Until his mother died seven years ago,  Bob had lived with his parents since his birth.  After his mother's  death, Bob was placed with several different families who acted as his  care  eventually  givers. decided  Bob  was  to try  not  happy  living  with  on his  these  situations  own, which  and  he has done  successfully for several years. My interview with Bob lasted for 50 minutes and, despite my efforts to steer the conversation on to other topics, always came back to the story of his experience of abuse in one of these family care homes.  Bob was placed  in this home  for two weeks  before his mother's death while she was very ill.  shortly  This experience  may have been brief, but it was obviously a key period in his life and it serves as the foundation  for the core narrative of Bob's  story.  Core Narrative:  Synopsis:  They Just Use You  While his mother was ill, Bob stayed in a family care  home in fairly isolated, rural area for several weeks.  During this  time, Bob had his medication withheld and was subjected"to physical abuse. going  Bob felt that his social worker should have known what was on  in  the  home  and  should  have  helped  Bob  find  another  72 placement.  Bob  was  trapped  recovered sufficiently  in  the  situation  until  his  mother  for Bob to return home, at which time she  assured him he would not have to return to that placement.  Orientation: 97- I don't know what I would do if anything happened to [my mother], I might have to go somewhere. Abstract: 442- you see they put you in there and they think, well, ... we will take care of that. 446- You know what caregivers are like, they use you, you know. 703- I guess they must have knew about it," [the social worker] knew about it—so there is something wrong there, isn't there? 712- You just don't do that to people, that's going too far. Plot: 157- she took my pills away from me and I even told the doctor, and I reported her. 681-684 I thought it was like a—like a gun that he had and when I told her she says you are lying. I says, all right, you don't believe me, ask your son. And then she— and she did that and she punished me. 182- I reported her. 392- I was just ready to, you know, to leave, but I couldn't get anywhere, you see. 413- And it was time, I guess, to get out.  73 414- There was no way I could get out. Resolution: 177- And they did, Tina, at the end, they found out what [the care giver] was like. 193- And [my mother] said don't worry Bob you will never go out there again. Coda: 212- I was sure glad to get out of there I can tell you that much.  Issues Experiences  of  abuse:  The single most significant issue in  Bob's story was his experiences of abuse and threatened violence, while  in  the  first  family  care  home  and  in  other  living  arrangements. Bob gave this summary of his thoughts on the original placement: she took my pills away from me and I even told the doctor, and I reported her. She didn't like anybody swearing. Well, lots of people swear. But boy was she a smoker. It was just like an.old farm house, you know. As we started to discuss specific events, Bob reported that extreme consequences were used to ensure he completed his 'chores'. I didn't have any supper—no, lunch until I got that work done. Now, do you think that's right doing that?  Bob also related that he was victimized by the caregiver's son while he was living there.  74 And I know darn well he brought that whip in, it was something that they use on the horses... and the kid brought it in and he started using it on me. Yeah. Bob also talked about an exploitive situation he was in while living in another family care home after his mother's death. well, when I couldn't look after myself with the banking, you see they would take my book away and [said] we will take care of that. Rather than help learn to Bob manage his money more effectively, his care givers took over his finances completely and did so against his will. As well, Bob had this experience while staying in a group home while his parents were on vacation: Well, they had these—these miserable nuns, you know, and one of them got mad and smacked me ... Now they are not allowed to do that ... lay a hand on anybody. Now, that was going too far. For Bob, every living arrangement other than his parents' house and his own apartments, was fraught with abuse and frustration.  Lack  of  choice:  Throughout  the interview, Bob made  reference  to being in situations he had not chosen, or had changed his mind about and could not escape from.  In relation to one residential  placement he was in, Bob said: I think I was there [in a family care home] for two years or three years. But I sure didn't like it out there. Bob also made this comment regarding another situation:  75 I had—I had a chance to try somewhere else and I said now what have I got myself into. There were several points in the interview where Bob said that he..- • felt trapped in circumstances,  And it was time, I guess, to get out. way I could get out.  There was no  but could not find an alternative. I was just ready to, you know, to leave, but I couldn't get anywhere, you see. Bob's feelings of being abandoned by his mother and by his social workers seemed to express themselves through his repeated references to these situations.  Relations  with  Social  Workers:  Several times in the interview,  Bob mentioned situations where social workers were helping him or should have helped him. the Ministry was helping me ... I was hoping to get out of there because I hated this place. Yet Bob remained in this particular placement for "two or three years". Bob was not always fully involved or informed about plans being made on his behalf by social workers.  And they [the social workers] were trying to find a place for me, but I didn't know what was going on.  . .  76 Despite Bob's attempts to report the care giver in the first family care home he was in to his social worker, it was ultimately Bob's mother (who was quite ill at this time) who helped him. And [my mother] said don't worry Bob you will never go out there again ... and made sure. For the most part, Bob was let down by his workers, either through slow responses to his requests or by simply not being there for him. Well, I had one on ***, she was a good one. They did switch a lot of those social workers, financial workers, the time when you want to get them they are busy or something. Despite this lack of support, Bob was quite aware that he was being neglected by his workers and that it "wasn't right". I guess they must have knew about it, [the social worker] knew about it—so there is something wrong there, isn't there?  Distrust  of  caregivers:  Bob's experience with respite care  and later with family care led to his cynicism regarding the motives and intentions of caregivers. You know what caregivers are like, they use [you], you know.  Later in the interview, Bob repeated his opinion. And they just use you, you know.  For  Bob,  the  only  way  out  of  this  problem  with  abusive  and  exploitive caregivers was to advocate for himself with them and with his social workers. And I was so mad [at them] you know, [I decided]I"am moving out, you know ... I was sticking up for my rights.  77  And boy, I sure—I was sure glad to get out of there.  Independent living was the solution for Bob. TINA: BOB:  So how is it now living independently? Very fine.  TINA:  Yeah.  BOB: Very good, you see. That's when you get out—when you are on your own you can do it.  For Bob, having his own place and managing his own affairs have been rewarding experiences." BOB: ... when you live on your own and you are independent that makes a difference and that's the way it goes, you see. TINA: BOB:  It makes a good difference? Yeah, that's what I say,  Comments: frightening between  Bob  period  was  after  different  thrown his  caregivers  into  a  mother's who  did  confusing death. not  and  He meet  sometimes  was his  shuffled needs  expectations, or simply allowed him to be exploited and abused.  or The  social workers in his life did not provide him with the support he felt  he  isolated  should and  have  trapped.  had  in these Bob,  situations  however,  and  persevered  he and  often  felt  eventually  managed to take control of his life by finding his own place to live where he felt happy and safe.  78  Tracey Tracey  is  a  forty  year  old  woman  with  an  intellectual  disability who lives independently in a comfortable townhouse in a housing cooperative. is  filled  to  Tracey is a dedicated collector and her home  overflowing  with  memorabilia  iconography and garage sale acquisitions.  from  trips,  Elvis  Tracey is also a tireless  self advocate and is involved in numerous activities and committe~es with  her  local  society  for  community  living  as  well  as  the  provincial organization. The subtitle  for Tracey's story is  'you live and learn', a  title she suggested towards the end of the interview. sums  up  Tracey's  story  which  is  one  of  taking  mistakes, learning from them and then moving on.  It accurately  chances, making  It is one of these  experiences which serves as the core narrative of her story.  Core Narrative: Synopsis:  You Live and Learn  When Tracey was much younger, she needed a place to live  and decided that her only option was to move in with her former boyfriend and his current girlfriend.  Tracey was receiving income  assistance at this point and what little money she had was going to her 'roommates' to cover their expenses. not a happy or comfortable  The living arrangement was  one for Tracey,  decided to find a place of their own.  so she and a friend  They found an apartment which  79 was run-down but at least affordable and allowed Tracey to begin to take control of her own life.  Orientation: 852- at the time I didn't have my own place 858-60- I didn't have anywhere to live so my ex-boyfriend had an apartment down on *** Street and he was letting me live there. And his girlfriend was living there... Abstract: 869-73- I was giving him all my money, all my—I was on disability, I was paying him rent, paying him the—paying the bills, buying the groceries and she is laying on her—her fat ass on the couch eating everything out of house and home and bossing me around.  Plot: 883-86- And one pouring down rainy night, it was a Saturday night, and [my friend] and I just got fed up, you know, with the situation and we just said, I don't know about you Tracey but I get—[my friend] says I am getting the hell out of here. 892-3- And then [my friend] said, well, Tracey, you are on [welfare] and I am on [welfare], let's do something together. Resolution: 195—6— So pouring, down rain we went looking for a place. And even though it was a dump it was ours.  Coda: 865-6- you might think I am really stupid like,' Tracey, how could you do this... 868-9- I can see it now but at the time I didn't.  80  Issues  Difficulties  with  income  support:  Tracey talked a great deal  about the income support system she has had to deal with since she was a teenager. I have been on what treadmill—on welfare  do  you  call  it, the  Ministry  In addition to inadequate benefit levels which have forced her into less  than  satisfying  living  arrangements  over  the  years,  she  commented on her frustrations with the bureaucracy of the system:  when you go in for the yearly review, you know, they ask all these silly questions, stocks and bonds and, you know, how much you got in the bank and all that. And I answered all of them. And I said, you know, if I had all that I wouldn't be on—I wouldn't need to be on my [disability] benefits cheque, you know. And he goes, he says, yeah, I know but I still have to ask all these questions.  Tracey also felt that workers in the system were not necessarily trustworthy and that she could not be completely honest with them for fear of reprisal. ...it is kind of like a stigma, you know, that social workers and financial aid workers you just tell them . what you have to tell them but don't tell them anything that you do in your personal life because, I don't know, you are always afraid that, you know, they might use—turn that around or use it against us or something.  A bigger issue for Tracey, however, was the stigma and bias she had  81  to  face  from  workers  distinction made  for receiving  between  disability  benefits  benefits  and the lack of  and general  welfare  benefits. not everybody, urn, that walks into the office is, you know, is a bad person, you know. Or they [workers] have in their mind that we are all on welfare, that's what I got, she was ... treating me like I am on welfare. And I am not saying people on welfare are all bad and people on disability are better than them, but we are two kinds of cats. And I think they really have to do this [change these attitudes] right away, I don't know if they can put a rush on it but to tell the people that are working in that office that you're not just dealing with people on welfare, you are dealing with people with disabilities, and you know, you might—you might be hurting their feelings, you know, the way you are treating them.  This  quote  illustrates  exactly  how well  Tracey  internalized the message that welfare is 'bad'.  has heard and Tracey wanted to  make it very clear that that she was receiving disability benefits and  not welfare.  For Tracey,  this  difference  was particularly  important because at other times in her life she has received both types of benefits and understands the stigma of being 'on welfare'.  Abuse and exploitation: interviews, situations  also  contained  Tracey's accounts  she had experienced.  story,  of abusive  For Tracey,  as do all  the  and exploitive  it began  with her  mother when she was a child. well, my mom was really mean to me from day one.  And, urn, so I moved out when I was 18 because my family life wasn't—it wasn't very, urn—my mom was hitting me a lot at home and it wasn't very good for  82 me, I was very depressed and—I tried—one day I just had it and I went—because my mom was—one time my mom came at me with a butcher knife and my sister got in the way and she ended up getting cut. And one day I just went in and got a knife and I just tried to cut my wrists and my brother ran in—my brother ran in and saved me. But my brothers didn't really know" what was happening to me because they were always out with their friends and it was kind of like I was alone in this situation.  Tracey moved from her family home into a place with her boyfriend and  several  years  later  lived  described in the narrative.  with  him  again  in  the  situation  Even though she was involved with him  off and on for many years and still considers him a good- friend, she made this comment on the relationship: Because my ex-boyfriend he was just, you everything for Bill and nothing for Tracey.  know,  Tracey also related this tale of harassment she endured while living in a rented apartment. TRACEY: And I had a ... landlord and I don't know it seemed to get in his head that because he is giving me cheap rent that he could have liberties with me. TINA:  Liberties?  TRACEY: Well, trying to—wanting me to have you know what with him.  Support:  In Tracey's story, her support came from her friends  and occasionally, her family. My younger life, well, my boyfriend helped me out a lot ... And he helped me manage the little money I had because I didn't—I was on welfare at the time.  83  Tracey also found encouragement through her association with advocacy groups. if I need support, urn, the people at [the provincial advocacy organization] are very understanding.  Tracey's friend encouraged and helped her to apply for membership in the housing cooperative where she had lived for the last ten years, as well, as helping Tracey leave the situation she described in the core narrative. Nowhere in her story did Tracey talk about receiving any concrete support from the social workers in her life.  As a matter  of fact, social workers did not seem to play any kind of significant role with Tracey, despite the fact that she had been assigned a worker for many years.  In Tracey's experience, . having a good worker  was a matter of luck. TRACEY: I hear it, I mean I get treated like that [disrespectfully] and some of my other friends they are lucky if they have a nice, you know, a nice social worker or [financial worker]. And if they are then you are darn lucky. TINA: Yeah, so yeah, exactly it comes down to luck rather than you going in and being able to expect to be treated— TRACEY: TINA: TRACEY:  Right. —  (Laughing)  in a respectful manner. Right.  Tracey also pointed out the ultimately irony in this situation: Because like I say if it wasn't for us they would be out of a job, you know.  Self  Advocacy:  For Tracey, it was been her involvement in  84 self advocacy which provided direction and strength in her life.  /  And I am very involved in my self-advocacy stuff too. And that's helped me a lot too, I used to be really shy. And [my friends], um, first told me about the self-advocacy committee at the old drop-in centre and I joined that and eventually I became the chairperson. And then I got involved with [the provincial organization] and I ran for their board and I am on their board again now and on different committees too so—so all of that stuff helps—I feel that it helped me a lot ... It helped me stand up for myself and others like myself.  Tracey had a vision of herself as an advocate for other people with disabilities and was very committed to assisting her peers whenever she could. TRACEY: Well, they kind of look up to me at the drop-in, Wendy and—Elizabeth and Susan and her sister Joanie and sometimes Dale, if they have problems and I say, well, they kind of look up to me as a kind of a counselor that—not in a professional way. TINA:  Um-hum.  TRACEY: And I say don't worry, I won't say anything, you know, just tell me what's the matter. And I notice that the staff there kind of realized that they kind of look up to me in that way, you know, that they can talk to me as a friend and you know I won't—I will give them my opinion but I mean I won't tell anyone else. But that kind of works a two-way street, like if I have a problem like I mention it to them and then they can help me and I can help them.  Tracey was also involved in educating the non-disabled community (as her participation in this research attests) about issues important to people, with disabilities. TRACEY: So I do guest speaking ... at [a local] College, and we have done—we have also gone to some private group homes, um, and done guest speaking [at  85 disability] rights workshops. TINA:  So mostly for self-advocates—  TRACEY: TINA:  Yeah. —  and other people with disabilities?  TRACEY: Yes. When we went to [a local] College we also had students like yourself in the room and also professionals too.  Tracey also spoke of her efforts trying to educate various community services on the issues particular to people with disabilities. Yeah, we are trying to get, urn, we tried to get, urn, advocacy into the professionals too, the police, ambulance drivers, the firemen, the hospitals, because we feel that's very important that they know how to treat people with disabilities.  Tracey  credited  her experiences  and  growth  in the  self  advocacy  movement with enabling her to manage her life better and to deal with frustrations and challenges more effectively. TRACEY: And I get along better with my mom now ... but still let her know that she can't hurt' me anymore because I will do something about it now. TINA:  Right.  Right.  TRACEY: Yeah. And at the same time I let her know if she ever needs any help, you know, that—because I am connected to—I could get her connected to seniors—senior centres and stuff, you know, at the same time so—so she, you know, she says, oh—she saysshe says she needs help with this or that I say oh, mama, let me help you.  Tracey summed up her attitude in this way: ...there is no use just—you know, dragging the past with you. Sometimes you have to move on. I feel like I have kind of moved on, yeah.  86 Comments:  In some ways, Tracey is among the least successful  of the individuals interviewed, at least by non-disabled standards. Tracey does not have a job and she is receiving income assistance, as she has for most of her life. For this reason alone, many would dismiss society.  her  as  non-contributing  and  residing  on  the margins  of  Yet, she has managed to work through and grow from her  past difficulties  and make a comfortable  life  for herself.  She  volunteers her time and talents to the self advocacy and community living movements without hesitation.  Tracey participates  in the  activities of her housing cooperative and takes great pride in her community work. support her.  She has loyal friends whom she supports and who  Tracey is, in my opinion, one of the most ^successful'  of all, by any standards.  87  Franklin Franklin will be sixty years old this year and he currently lives in a rented apartment he shares with a room-mate.  Franklin  works part-time in a competitive job and his income is supplemented by disability benefits.  Franklin has lived in the community for the  majority of his life, save for a seven year period in his teens when he  lived  in  the  local  regional  intellectual disabilities.  institution  for  people  with  Prior to that period he lived with his  family and immediately afterwards he lived in a family care home for many years before deciding to live independently. involved  in self advocacy  provincial level.  Franklin has been  for many years, both at the local and  He is also an active member of the Toastmasters'  public speaking organization and a fan of many forms of live music. My interview with Franklin was the most difficult of the four I  conducted.  Through  out  the  interview,  I  thought  somewhat detached from the events he was describing. after  he  had  spent  some  time  describing  his  him  to  At one point,  experiences  at  institution, I realized I had no idea how he actually felt living there.  be  the  about  I finally asked him specifically whether or not he  liked it there and he told me "not really — it wasn't a place where I would like to live".  I wondered whether or not Franklin actually  wanted to do this interview, or if he felt pressured into it. taken  great  care  discussing  through the consent  the  research  with  him  and  I had  had  letter with him to ensure he understood  agreed with the process.  read and  As well, Franklin was a willing and eager  88  participant in the focus group discussion the year before and, as a result, was familiar with my work. not coerce  While I am confident that I did  Franklin into participating, I am still not absolutely  sure that my being non-disabled  (and, as a result, something of an  authority figure) did not play a role in his decision. was  heightened  for  me  when  I  divined  the  core  This concern narrative  in  Franklin's story and I began to see what I consider to be a subtle pattern of deferral to non-disabled people in his life.  Core Narrative: Synopsis:  You Have to be Nice After  adolescence,  living  Franklin  in  moved  the into  institution a  family  for  care  most  home. .  of  his  Franklin  expected to have more freedom in his new home than he had in the institution, but found that his new caregivers also had strict rules regarding  his  conduct.  As  well,  Franklin  also  suspected  these  caregivers of taking control of his money and keeping any surplus he may have had.  Despite these concerns, Franklin stayed with these  people for approximately twenty years, until he moved out into his own place. Orientation: 108-11- But I stayed there [in the institution] until—until I was ready to go because what I understood my parents found a place with a couple that lived [nearby] so that was my home away from [the institution].  89  Abstract: 149-51- You know, because I wanted a little freedom and do something, you know, like, you • know, visit friends and do things like that.  Plot: 127-132- They seemed to be nice. But when I was going to that shelter workshop on *** Street and when I got paid, what happened is I thought I could keep the envelope myself with the money in it, but apparently they were looking after my money and I just took out what I needed. I guess and they kept the rest. 151-5- And I don't know, this is something—I don't know what this woman—what this lady was thinking of because when I was— when I was—when I was having a social with a girl she thought that I was having sex with her and I was never able to see her again.  Resolution: 112- So I was—I lived with them for I think it was about 20 years— 134-6- So, you know, when I lived on my own, you know, I didn't have that problem because I thought that money was mine and mine alone and I could do whatever I want with it ...  Issues Abuse: experienced  Franklin's story contained recollections ..of abuse. ..he at the hands of caregivers.  As he described  in the  narrative, his caregivers took control of the money he earned at the sheltered workshop.  90  I thought I could keep the envelope myself with the money in it, but apparently they were looking after my money and I just took out what I needed. I guess and they kept the rest. These same caregivers also kept Franklin from having relationships with women he was interested in because of their fear that he may have become sexually active. when I was having a social with a girl, she [the caregiver] thought that I was having sex with her and I was never able to see her again Franklin was quite upset by this attitude, but he did not report it to his social worker. I never talked to anybody about this, not even to a social worker or things like that, you know. So I had to find somebody else, you know, that really upset me that I [couldn't] continue on with a relationship, you know. Despite  these  frustrations,  though,  Franklin  stayed  with  these  caregivers for approximately twenty years. Relations Franklin  with  social  did not have  workers:  a great  Like his peers in this study,  deal  of positive  social workers he has had in his life.  feeling  For the most part, social  workers simply did not play a significant role in his life. FRANKLIN: I had another fellow too but he had to move to another Ministry area and his name was *** but I never talked—talked with my social worker that I have now. TINA:  Really.  FRANKLIN: TINA:  Yeah.  Have you met him at all?  FRANKLIN:  for the  I can't remember if I did or not.  91  Franklin also expressed frustration (or resignation) with the amount of turnover among social workers. I have never been able to get—or I never talked with my social worker because social workers keep changing sometime s, you know. Deferral  to  non-disabled  people:  As I mentioned previously,  the most striking feature of this interview for me was Franklin' s lack of emotion while relating his experiences. difficult  to  understand  until  I  had  gone  I found this very  over  the  interview  transcript many times and slowly began to see what I now understand to be a pattern of deferring to and apologizing  for non-disabled  people throughout his life. In  our  discussion  about  his  relationships  with  his  social  workers over the years, there was this exchange: TINA: So the social workers haven't been—it sounds to me like they haven't been that important for you. FRANKLIN: Well, it is not that they are not important, I never sat down and talked—talked down with them, you know, but I should, I should, you know, because he probably wants to know a little more about me. Despite the fact that his workers seldom seemed to make an effort to contact him or to provide a great deal of support, Franklin was still willing to make excuses for their conduct. Moreover, he also felt the need to assume that some of the responsibility  for this  state of affairs was his and that he should be making more of an effort to engage his workers. Even  when  describing  his  experiences  with  his  caregivers  92 taking control of his personal money, Franklin indicated that he may have misunderstood the situation and that, again, he might have been partially to blame. I thought that [the] money was mine and mine alone and I could do whatever I want with it and I didn't know they were supposed to look after that. Finally, this lengthy exchange which took place about half way through the interview while we were discussing life with his current room-mate, I feel, illustrates Franklin's attitude quite clearly. FRANKLIN: And I don't know, for some reason I understood that if someone is in the apartment you don't have to lock the door from the inside, do you Tina? TINA: That depends, I always do, but then again I am a little nervous sometimes, you know. FRANKLIN: Well, I understood that—maybe this was something I should talk with [support staff] about this because when nobody is there you lock up. TINA:  Yeah, definitely.  FRANKLIN: But if somebody is at home I didn't think you had to lock it from the inside. TINA: Well, it depends because sometimes if someone can get into the building, right, they might try all the doors to see if they can break into the apartment. And even if you are home they can still try your door and the next thing you know you have a stranger in your apartment. FRANKLIN: TINA:  Yeah.  That's why I always lock my door.  FRANKLIN: Maybe, yeah. Because I always have the key to open the door anyway. TINA:  Yeah.  FRANKLIN: guess.  Well, maybe it is for safety precaution I  93 TINA:  Because it is a pretty easy thing.  FRANKLIN: You know, because the door was closed, you know, and of course you knocked on the door, you know, so and let you in, but I don't know maybe—maybe you should lock it from the inside. You know, I was just kind of curious. TINA: Well, that's my thinking on it anyways, that's what I do, yeah. FRANKLIN: TINA: know.  Yeah.  Don't want anyone wandering in by mistake, you  FRANKLIN: Oh, no. Sometimes people knock on the door, you know, but you have to be nice—you know, you have to be nice when somebody knocks on your door but before you open the door you have to say who is there, you know. TINA: Well, yeah, that's why—so that's why it helps to have the door locked.  Franklin's comment that "you have to be nice" is another example of how he felt compelled to submit to the will of others. was necessary  to compromise  his  stranger knocking on his door. this  conversation,  safety  in order  He felt it  to not upset a  As well, it is my feeling that, in  Franklin was  looking  to me  as a  non-disabled  person, and therefore, something of an authority figure, and asking for approval for his actions.  What is frustrating for me is to see  how easily I slipped into that role with him.  Comments:  In addition to being the most difficult interview  to conduct, Franklin's narrative was the most difficult of the four for me to  'divine' .  Because he seemed so disconnected  from his  stories, I had difficulty determining which were most significant. I finally chose the story of his experience in the family care home  94  because it seemed to me to be most reflective of Franklin's life and attitudes.  Even though he knew his caregivers were exploiting him  and denying his rights, he stayed with them for many years, because, despite it all, they were non-disabled and knew what was best for him.  95  Janey Janey is forty eight years old and volunteers one day a week as an aide in a nursing home.  Janey lives independently in a rented  basement suite in a middle class suburb.  Like Franklin, Janey spent  a number of years living in the regional institution while she was a teenager.  Unlike Franklin, Janey enjoyed living there and remembers  her  there  time  as  the  'good  old  days'.  After  she  left  institution, Janey moved back to her family for a year.  the  She found  it to be very difficult situation, so she moved to a group home and lived there for two years.  As in Bob's account, Janey was not happy  in the arrangement and decided to try living independently which she has done ever since. I  found  that  Janey's  interview  was  significantly  emotional and dramatic for me than the other three were.  more  Whereas  Bob, Franklin and Tracey had all shared painful experiences  from  their pasts, at the time of the interviews they were all reasonably content  with  arrangements.  the  current  Janey,  on  state the  of other  their hand,  lives has  and  their  found  life  living since  leaving the institution to be very difficult and has very little support to help her deal with it. She has developed mental health concerns and is currently on antidepressant medication. Janey's core narrative is about her desire to go back to the institution where she felt safe and her ambivalence and guilt about feeling that way.  96 Core Narrative: Synopsis:  If There Was an Institution Open, I Would Go  Janey lived in an institution as a teenager and was a  young adult when she left.  She had tried very hard since then to be  independent and manage her life on her own, and though she has. been reasonably successful, she has found it extremely difficult.  Janey  felt fearful of the responsibilities she had and commented that she sometimes wished she could return to the institution where she felt safe and protected.  Knowing that she had very few options, Janey  felt she had little choice but to continue on the way she was. Orientation: 408-10- I don't know if I should say this but I sometimes feel if there was—if there was an institution open I would go.  Abstract: 382-3- I guess I really—since I came out of the institution I got older I guess life is very hard, I find it very hard. 401-4- And I guess in—I guess in [the institution] I figured I was safe, you know. You get out here where there is people that, you know, that harm people and—and, urn, but at [the institution] they have those fences and stuff around. 412-4- And I think in this situation that would be the wrong thing to do because that would be a real put-back for me because actually I have learned a lot since I have been out. Plot: 385-92- Now I have to do all the decision-making and I have to—you  97  know, because sometimes when I ask something, you know, I say I don't know. And they say, well, we need your decision. And I say, well, sometimes, you know, I have to sort of think about it, you know. And then I make the decision on the— right at the—you know, as soon as I can and then I realize sometimes it could be the wrong thing. And it is sometimes—it basically is the " wrong thing. Resolution: 394- So I don't know what to do in that situation. Coda: 397- But I mean, otherwise I am—I guess I am doing okay. 400- Trying to anyways, yeah.  Issues Abuse:  Unlike  many  other  disabilities, Janey had no tales institution.  people  of abuse  with  intellectual  from her time  in  the  Janey's- experiences of abuse occurred after she le-ft  the facility and was living in the community. I did live in a group home and that was—I think I told you at the last meeting when—well, it was actually the tail-end of the meeting where the [caregiver] sort of punished me because I had an accident and I didn't know where to put the sheets.  Janey described the punishment she received: Well, right after school I couldn't do anything. She said after supper I had to go downstairs and get ready for bed and that was -- that's what I had to do for a whole week, I couldn't, you know, watch T.V. or anything. Janey was twenty years old at the time of this incident.  98  For Janey, the worst situation took place while she was living with a room-mate in an apartment when the building manager began sexually abusing her. It was terrible. I told him it was wrong. He said Janey, everybody is doing it. I thought oh, no. I said, you know, you shouldn't be married if you keep this up. And he said, um, oh, gosh, he said, I can't marry you right now my wife—my wife, I am married. And I said, well, I know that. And it was just terrible. What made the situation even more difficult for Janey was the lack of support and isolation she felt. And I didn't tell mom and actually I didn't tell anybody. I told my roommate and she said that's impossible because he is a married man and he wouldn't do it. So we started to get into bigger arguments and fights because of it. Because I was sort of handling this on my own. And now the social worker we had, you know, she was terrible. She knew for two months that we were having problems. She didn't come to see us or talk to us or anything. So here I was trying to fight this all on my own.  Relations  with  social  workers:  Throughout the interview Janey  expressed her dissatisfaction with and disappointment in the social workers she has had over the years. But, I mean, you know, a social worker who knew for two years who didn't, you know, didn't even bother to come out and see us. And then I got this other social worker and he wasn't any better  JANEY: So anyways that was that social worker and now I have another one who I never hear from, but she was good enough to get me a counselor. TINA: JANEY:  Okay, well, that's something, hey. After five years of waiting for a counselor.  99  I just know I find it very hard right now. And, you know, the social worker really, you know, they really haven't helped me—  And the social worker I guess really doesn't have the time, they always have too much to do or—but I find sometimes, you know, they have to just sit at their office looking at books or something, I don't know. You phone them and they don't return your calls, maybe for two or three days later. They phone you I guess when they feel like it.  Even more frustrating for Janey was the feeling that she had been neglected by workers who relied on her family to do their job for them. JANEY: And I feel the social worker should get involved in that kind of thing, you know, it shouldn't be left up to the family, my mom has enough to do. So, you know, the social worker should sort of help me on that. And sort of sit down with you and discuss what kind of place you are planning on and look into the rent and stuff like that. But I mean, you know,' I have gone through social workers and the one who said that, you know, you've got family, they will help you, you know, that's not good. TINA:  Right.  Right.  JANEY: You know, that really isn't good, they should be doing their job, you know.  Janey was also frightened and distrustful of the bureaucracy her workers operated within.  She was concerned that, even when she does  get help, it may not last long. TINA: JANEY:  So how long you been seeing the counselor? I would say about four months.  100  TINA:  Yeah.  JANEY: But sometimes I figure, what the heck sometimes, why should I go see her. Um, you know, I am not going to have her for long because, you know, she is paid by the government. And right now they are sort of (laughing) you know, I guess they are having problems with the money so once she, you know, she doesn't get paid anymore I can't see her anymore. TINA:  Right.  JANEY: So I am going to have to try to struggle with [this] on my own. Lack  of  support:  As can be seen in the core narrative, Janey  felt somewhat overwhelmed with demands made of her in her life and was worried that she will fail. But I mean, I find it very hard nowadays because with the decisions I have to make, you know, I think I am going to make the wrong one.  Janey's response to this pressure was to long for the old days when she lived at the institution and these decisions were made for her. She used the example of having to manage her finances to highlight this: You know, I had institution] but it account, and, um, now And, you know, I have end of the month ...  money when I was at [the was put in a place where—an that I have money I spend it. a hard time keeping it for the  All this led Janey into stating: I sometimes feel if there was—if there was an institution open I would go.  Considering the history of institutions for people with intellectual  101 disabilities whole  has  and the disdain for  them,  the  Janey's  community  statement  living movement  was  quite  stunning  as a and  revealed how desperate she felt. Janey was extremely ambivalent about this situation, however. Much as she would have liked to go back, she also knew that she had grown and learned a great deal since those days. And I think in this situation that would be the wrong thing to do because that would be a real put-back for me because actually I have learned a lot since I have been out. And some people say that some of the—I have seen some of the staff that used to be at [the institution] and they say that seeing me now, they said I should never have been put in there.  Janey also prided herself on her independence. So basically I" do a lot of stuff on my own. You; know, the grocery shopping and bill paying and stuff like that I do it all on my own. I think I like living on my own.  As well, Janey felt quite guilty about her feelings and had a sense that her attitudes had separated her from her peers somewhat. JANEY: ... And I know a lot of people think differently of [the institution] because the girl I lived with hated it. ' • TINA:  Yeah.  JANEY: Absolutely hated it. But she was older and she went—and I guess sometimes I should feel, you know, like the others about [the institution] but I can't.  Janey's desire to return to the institution seemed to derive from her sense of isolation and the lack of support she had in managing her life. Janey was angry about this, but she also seemed resigned  102  to this state of affairs. JANEY: ...But I guess that's what it is when you get out of places like that [the institution], I guess you have to sort of try to fend for yourself. TINA: It might be nice to get some help sometimes though. JANEY: Yeah. But my mom, she does help me, but I mean, you know, she is not well, and you can't depend on her, I can't. Like my social worker, you know, she should be doing a little bit more than what she is doing. You know, they should phone and see how you are doing ... But she doesn't.  Comments: worker. who  Janey's story was very frustrating to me as a social  Janey was a pleasant, warm, sociable and considerate woman  obviously  community.  had  a  great  deal  to  offer  her  friends  and  her  Yet, because of the lack of support in her life and her  crushing fear of failure, she felt overwhelmed by day to day living and would have preferred to return to the cloistered, but protective world of the institution.  My frustration comes from the complete  lack of alternatives Janey had. but  isolated  institution  and  painful  The choice between an independent  life  versus  the  total  care  of  the  (or many other residential options) is not really any  choice at all.  Summary The issues  participants  which  should  in be  the of  individual  great  concern  interviews to  all  raised of  us.  many The  participants also clearly showed that they are quite aware of their  103 position in society as intellectually disabled people and what that identity means in their lives. explicit  how  popular  The stories I was told serve to make  attitudes,  public  policy  and  systematic  discrimination play out in individual lives. Obviously, the most striking of the findings was the extent of the violence and abuse the participants were subjected to.  All the  interview respondents reported incidents of victimization of varying forms.  Another unsettling trend in the interview results was the  poor quality of service the respondents received from social service professionals, frequently social workers.  The participants had been  treated disrespectfully, ignored and neglected by their workers over the years and were clearly unhappy with this treatment.  All four  individuals told stories of being trapped in unhappy or even abusive living situations because of lack of support or lack of resources (primarily financial) to find alternatives. On success.  the  other  hand,  I  also  heard  stories  of  strength  and  Tracey had found her way out of abusive and manipulative  relationships through involvement in self advocacy and the circle of supportive friends she had developed.  Bob and Franklin both managed  to  and  persevere  living.  and  find  satisfaction  autonomy  in  independent  Even Janey, who had the most difficulty with her day-to-day  life, was continuing despite her fears.  They showed their ability  to find inner resources in adversity and survive traumas which could have destroyed them.  104  Discussion In troducti on The participants in both the interviews and the- focus group were  quite  cognizant  intellectually  of  disabled  the  and  consequences in their lives. that  they  repeated willing  were  vulnerable  fact  that  that  this  they  are  considered  identity  has  particular  There was an unstated understanding  to  exploitation,  as  witnessed  by  the  stories of abuse they shared. The participants were all to discuss  their  needs  for assistance  in managing  lives and the difficulties they often had finding it.  their  There were  several discussions about poverty, especially in the focus group, and how this  fact of their lives limited their options and made  their lives unnecessarily difficult. A significant difference between the focus group data and the interview findings was the highly political nature of the discussion in the focus group which was much less overt in at least three of the four interviews  (Tracey's interview was the most Apolitical' in  orientation, while Franklin's was the least so).  In the interviews,  difficulties were framed as primarily personal in nature.  However,  in some of these discussions, hints of the larger political picture emerged.  For example, while Bob was describing his experiences with  abusive caregivers, he broadened his criticism, saying "they just use you", and implied that people with disabilities can be exploited by  their  caregivers  and  in  doing  so,  made  a  clear  political  105 connection.  My feeling is that this is an example of the process  which these individuals with intellectual disabilities are going through in terms of their politicization. In the larger group, the x  big picture' was more clear and the disabling role of society was  easier to identify, whereas it was more difficult to see the effect on an individual basis. The particular issues raised by the participants were varied and have clear implications for those who make policy and provide service.  The role for social work as a profession also requires a  specific examination.  As well, there were specific methodological  issues which were raised in this work which deserve specific comment and evaluation.  Finally, the value of this particular study and  possibilities for future research need to be considered.  Issues Lack of In  Choice/Control the  focus  group  and  the  individual  interviews,  the  participants' lack of control and choice in their lives was made clear.  This  arrangements.  is  especially  apparent  in  regards  to  living  Bob's story of being trapped with an abusive care  giver and Franklin's experience of spending twenty years with care providers who took his money and thwarted his relationships with women show how little control they had in these situations.  This is  largely  support  due to a service  system which  does  not  fully  individual rights and preferences. People with disabilities caught  106 in this system often have very little control over their services and,  as  a  generally  consequence, tied  to  over  services  their  rather  lives. than  Because  funding  individuals, people  is  must  accept services as they are offered, regardless of appropriateness, or risk receiving no service at all (Roeher Institute, 1990) .  This  results in people becoming trapped in inadequate programs that do not meet  their  needs. This  limits  their  ability  to  reach  their  potential as human beings and exercise their rights as citizens.  In  residential settings, for example, an individual requiring support is often 'dropped' into the first available vacancy, regardless of its usefulness  for  fulfilling  the  individual's  particular  needs.  While this could be said of many services for non-disabled people as well,  it. is  more  problematic  for  people  with  intellectual  disabilities because placements are generally long term.  Implications  for  Policy  A frequently cited solution to this problem is individualized funding  (IF) (Roeher Institute, 1993) .  IF is a blanket term for a  number of different funding schemes which vary considerably, but it is based on the notion of tying funding to individuals rather than services.  The goal of this arrangement is to give as much control  as possible to the individual and to arrange specific services which fit  the person's  needs, rather  than making  the person  fit  into  existing generic services. IF arrangements have the potential to allow people to live in the manner they chose, rather than the way the service providing  107 agency  determines  is  feasible  or  appropriate.  For  example,  as  discussed earlier, the principle of normalization and the practices which derive  from it have  created  a situation where  same-gender  relationships are not generally supported  (because they may not be  seen as culturally valued)(Brown, 1994).  This lack of endorsement  has  resulted  in the  living arrangements  reluctance  of agencies  to provide  for gay and lesbian couples  (this could also  largely be said of heterosexual couples as well). funding scheme, however, would allow couples to  organize  their  own  living  arrangements  supported  An individualized  (and their advocates) and  supports, without  being restricted by the moralistic whims of others.  Inappropriate  Support  The participants were all quite open about the assistance they required  to live their  extension  of  this  lives and made no apologies  understanding,  however,  was  for it.  the  An  unquestioned  acceptance that they will always have professionals in their lives and  that  these  professionals  wield  considerable  power.  This  'hegemony of service' which the participants live within is a direct result of the medicalized understanding of disability in our society which dictates that disability requires 'management' (Rioux, 1994b). It is also partially a consequence of the practice which  is, as Chappell  principle.  (1992) noted, a very  of normalization  professio.nal-friendly  Even while criticizing the medical/institutional model  of disability, normalization manages to set out a clear agenda for  108  professionals working with people with intellectual disabilities in order to assist them to integrate into the community. The difficulty seems to arise from the lack of a compromise or middle ground position regarding support.  If it is accepted that  many people with intellectual disabilities require assistance with daily living, why does it follow that the support must be global? Or,  as  in  Janey's  situation,  if  a person  requires  minimal  or  infrequent assistance with particular tasks, why does that support not exist? services  There appears to be an all-or-nothing aspect to support  which  results  in  people  above  a  certain  threshold  of  impairment receiving a sometimes excessive amount of services and those below the threshold unable to access what they need.  Poverty Another issue which contributes to the lack of control that people with intellectual disabilities face is poverty.  Poverty, the  inadequacy of income support programs and unemployment were topics of interest, either implicitly or explicitly, to everyone focus group and the individual interviews. experienced the unemployment  in the  All the participants had  and poverty which seem to be almost  endemic to living with an intellectual disability in Canada. The welfare  process  of  obtaining  income  support  system is both intrusive and humiliating  disabilities. They  are  frequently  subjected  in  our  residual  for people with  to extensive  medical  examinations and testing as well as (often) mandatory rehabilitation  109  programs in order to qualify. The only definition of disability that is  acceptable  is  that  of  the  'experts'  or  professionals  -  the  assessment of the individual with the disability is not sufficient. The  emphasis  on  medical  identification  and  determination  of  disability status set physicians up to act as gatekeepers in order to protect  'the system' and allow only the  'deserving'  truly  (or  disabled) access to income support (Rioux, 1994b). It  is  clear  that  prevailing  income  support  policies  and  programs dealing with people with disabilities are wholly inadequate to  the  task  of  participation.  truly  supporting  community  living  and  community  Of all the causes and explanations for the current  situation, one of the most important factors may be that people with disabilities were never really considered when these structures were originally developed and disability programs are merely 'add-ons' to existing programs.  Because of this, most programs fail to meet the  particular needs of people with disabilities.  (Roeher Institute,  1990).  Implications  for  After  Policy  several  and  services  affecting people with disabilities, the Roeher Institute  (which is  affiliated developed 1994.  with  the  years  Canadian  and released  The  Canadian  of  researching  Association  its proposal  Disability  policy  for  Community  for reform of the  Resources  Program  Living), system  in  is a detailed and  comprehensive program proposal which would create a national program to  provide  support  for  the  costs  of  disability,  while  still  110 recognizing concerns about costs and financing of social programs (Rioux & Crawford, 1994). The program would not be an income support plan, rooted in the current welfare system. fund  related  needs, such as wheelchairs,  support workers, technical aids, etc.  Use of the program would not  be  the  cost  Instead, it would be a service which would  of disability  contingent  on  income  level,  age,  type  of  disability  or  employability; eligibility would be based solely on the presence of a disability restrict  related need.  access  to  other  The program services  and  criteria would also not opportunities  education and participation in the labour force . be  based  on  individual's  a  non-medicalized  determination  assessment  of need.  Consumer  such  as  Eligibility would  which  involved  rights  would be ensured through the use of individualized  and  the  control  funding which  would also result in increased effectiveness and responsiveness of services (Rioux & Crawford, 1994).  Violence  and  Abuse  One of the most disturbing issues raised by the participants in the focus group and the interviews was the startling amount of violence, sexual, physical and emotional, that they are subjected to.  Incidents ranged from public verbal harassment to detainment to  overt sexual violence and rape.  One respondent described how people  who had attempted to escape from an institution were incarcerated in locked rooms as punishment.  Much of the sexual violence described  Ill to me was perpetrated by acquaintances of the victims or by support staff.  It is clear that these violent behaviours the.. respondents  were faced with arise out of the exploitation of power imbalances between  people  with  disabilities  and  non-disabled  people  on  personal, community and institutional levels. Part  of  this  problem  arises  from  societal  attitudes  that  objectify, devalue, marginalize and emphasize limitations that then serve  to  dehumanize  towards  them more  because  people  people  with  disabilities  likely while minimizing  with  intellectual  and  this  disabilities  make  violence  crime. in  As well,  particular  are  frequently taught to comply with the wishes of non-disabled people around  them,  incidents  their  after  the  ability  to  fact  often  is  defend  themselves  limited  or  (Sobsey,  to  report  1994).  The  example of Franklin and his insistence that "you have to be nice" even if it means not locking your apartment door to strangers, is a clear indication of this kind of ^trained compliance'.  Implications  for  Policy  A great deal of the work in this area is being done by self advocates who are already working on solutions to the problem of violence in their lives.  In her interview, Tracey described one of  the activities she is involved in: our self-advocacy foundation we put together a book on safety, safety in your home and in your community and we hope that that will help a lot.  Acceptance  of  disabilities  and  seems  knowledge to be  about  a large  violence part  of  against the  people  solution  with  (Sobsey,  112  1994) .  As well, education for professionals involved in the lives  of disabled people is necessary.  Tracey commented on the role of  emergency services in assisting disabled crime victims and the need for education: I think that's the whole idea with the community police office is to try and break the ice, that you're not—you're not afraid to phone the police because, you know—because you feel like they might think you are stupid or, you know, why you, are phoning us. Yeah, we are trying to get, um, we tried to get, um, advocacy into the professionals too, the police, ambulance drivers, the firemen, the hospitals, because we feel that's very important that they know how to treat people with disabilities.  As well, participants in the focus group were actively lobbying for treatment services specifically for intellectually disabled people "who have been sexually abused.  Social  Work  Role  The implications of this study are broad for social work. criticisms  of  social  workers  raised  by  the  respondents  The are  unsettling. All the respondents, in both the focus group and the interviews, related stories about inadequate or insulting services they had received. liars by workers.  Several people  told  stories of being  called  Others complained that social workers did not  follow through on commitments or were simply not accessible. The participants felt that their most significant concern was the lack of respect they faced when dealing with the service system, either through the attitudes of workers or through the inaccessibility of  113 resources  and  services.  Certainly,  conclusions  generated  from  a  study of this nature . cannot be generalized, but incidents such as the ones described are unacceptable even if they are isolated. At the same time, however, the participants had clear ideas on what social workers should be doing to better support people with intellectual disabilities. Janey felt that her social worker should "phone and see how you are doing" as well as helping her in her efforts  to find a new place to live, rather than leaving  family members to assist.  Tracey  it to  felt that workers would better  serve her by not focussing on her disability, but by seeing her as a whole person. If one of the foundations of our profession is the respect of all people, than this is an example of where we have failed.  Part  of the failure can be traced, as several of the respondents noted, to  social  work  education  disability issues.  and  the  frequent  lack  of  training  in  A survey of 144 schools of social work in the  United States revealed that only 21% of programs offered specific courses in intellectual disability and that most opportunities study this area exist only in graduate programs  to  (Depoy & Miller,  1996). This has served to keep issues around intellectual disability in general out of the collective social work consciousness.  The  participants in the focus group were quite aware that their issues were not on the social work education  cirriculum  and one person  stated "we should actually get some part of a course where they take people like us and learn to work with them".  114 While  this  situation  has  certainly  not  helped  people  with  intellectual disabilities, it has not been of benefit to social work either.  As Hanley & Parkinson (1994) state: it is lately of great concern among professionals in this field, however, that social work practice is placed last or seen many times as an ancillary profession in its contributions to the enhancement of the dignity of the lives of individuals with cognitive and/or physical challenge and/or their family members. If professionals in the field of social work continue to react only to the mandates set before professional practice with this population, they will become less able to determine the growth of the profession, set new goals, and gain the knowledge and techniques necessary for working with individuals who have disabilities and their families. (p. 426)  In other words, social work, as a profession,  runs  the  risk of  becoming irrelevant in this field.  Implications  for  Practice  Irrelevancy does not need to be the fate of the profession; there are a variety of roles social workers can play in this area which  would  help  improve  the  lives  of  people  with  intellectual  disabilities and give the profession direction in this field.  Direct  Service As  practitioners,  understanding people  of  social  intellectual  so labeled.  workers  disabilities  need • to and  the  develop issues  an  facing  As case managers, social workers need to be  aware of this issue and to ensure that people receive services that are  appropriate  to  their  needs,  as  well  as  advocating  for  the  development and funding of such services when they do not exist.  115  Workers must also recognize that all people can exercise some level of  personal  autonomy  and  supported and respected.  that  this  is  a  skill  which  must  be  Too often, notions of independence and  personal empowerment are considered ideals rather than realities for people with intellectual disabilities.  The  Profession As  a  profession,  social  work  must  move  away  from  the  medical/therapeutic model of disability and begin to understand it from a social and political perspective. committed  to  communities realizes  battling and  that  racism,  institutions;  ableism  is  sexism it  equally  is as  Social work must make a commitment begin to work with it to change  Social work has long been and time  heterosexism that  destructive  the and  to the disabled  the  structural  in  our  profession oppressive.  community  conditions  to  which  operate against people with intellectual disabilities and threaten their physical, social and economic well being.  Me thodological  Considerations  It has been both a blessing and a curse for me in that there has been very little qualitative research done with people who have intellectual disabilities.  It has been a blessing in that I have  had a great deal of freedom in determining my methodologies and I have felt no guilt in adapting traditional techniques for use with people who intellectual disabilities.  This follows the dictates of  the social model of disability which states that it is non-disabled  116  structures and attitudes which must change to become accessible to people with disabilities and not the other way around.  The curse,  however, has been in the lack of guidance I have had throughout this process in terms of specific methodology. speak  of  informed  consent  and  to  have  It is well and good to respondents  sign  consent  forms, for example, but how is that relevant for someone who does not read and has difficulty understanding lengthy sentences?  One of  the most time consuming aspects of my research has been the process of making it accessible and meaningful to the participants.  Consent: In order to obtain what I considered informed consent from the respondents, I went through several steps.  First, I met with the  self advocacy committee at one of their regular meetings simply to introduce myself and give a brief description of my research.  I did  this specifically to personalize the research and try to make it more  'real'  and  less  abstract  to  the  group.  After  I left  the  meeting, the group discussed their participation and informed me of their decision several days later. The difficult.  consent  letters  each  participant  signed  were  more  The university has a very specific format for consent  forms which must be adhered to.  I took the format supplied by the  university and rewrote it into plain  language  (Canadian Association  for Community Living, 1997)(see appendices A and C) which would be more accessible to the participants.  Plain language refers to a  type of writing which is straight forward and jargon free, but is  117 not  condescending  or  simplistic  (CACL,  1997) .  Even  with  this  modification, since there were participants who did not read at all, more  adaptations  approximately group  (and  were  called  for.  To  address  this,  twenty minutes prior to the beginning usually  about  five  minutes  before  I  spent  of the focus  the  interviews)  discussing the research and reading over the consent form, line by line, with the participants before they signed the form.  Focus Group/Narrative As  Techniques:  I noted earlier  disabilities,  especially  in this paper, people with those  with  limited  verbal  intellectual skills,  have  generally been considered poor choices for these kinds of research methodologies not  have  the  insights.  (Booth, 1996), primarily because they were deemed to requisite  insight  or  ability  to  articulate  their  While I obviously disagree with this attitude and believe  that this study has shown otherwise, there are issues with these techniques that do require consideration and modification in order to be successful for people with intellectual disabilities. The single most  important  adaptation  to the process  increase in the time spent in the data gathering process. Booth's  is the  Booth and  (1994) study of patents with intellectual disabilities was  narrative in nature and was the result of many hours of interviews and many months of involvement with their participants.  I did not  have the luxury of time or resources enough to follow their model and I consider this to be a major weakness of my study, especially in  the  narrative  section  and  with  in  particular  and  Bob  and  118 Franklin.  Had I been able to spend more time with them, I believe I  might have been able to get a more complete picture of Bob's life and might possibly have gotten past Franklin's deferral to me as a non-disabled person. Another  issue which is related to the amount of time spent  with the process is the depth of the relationship between researcher and  respondent,  which  respondent's stories.  leads  to  a  better  understanding  of  the  Because some of the people in the focus group  and in the interviews had limited verbal abilities, there were many times when a type of verbal  ^shorthand' was used.  It was often  assumed by the participants that .1 understood what they.were talking about when they made reference to certain services, programs, or even individuals. participants were  talking  Since I work in the same community as most of the  lived, I generally did understand who and what they about.  Another  researcher  less  familiar  with  this  community, however, would likely be at a loss a good deal of the time and would miss many of the subtleties in their stories.  The  only  and  way  to  combat  this  is  familiarity  with  the  lives  particulars of each participant which can usually only be gained through time and involvement.  Transcripts/Findings Part of my  : research design  included member  checks with the  participants in order to ensure the accuracy of the transcripts and the findings.  Again, because many people in the group did not read  119  and even among those- who did, not many would be willing to read through a forty page.transcription, I was compelled to find other ways of making the data accessible. was  to use the videotape  transcript.  of the  The most successful technique  focus group proceedings  Several weeks after the meeting, I arranged  as the for the  group to meet again and played the videotape of the discussion for them.  I asked them to watch and to make sure that what was said was  accurate and reflected the issues they wanted raised.  The group  enjoyed the video immensely and was quite happy with it.  I did not  videotape the individual interviews, so I decide to use the core narratives as transcripts and go over them with the participants. Probably the most difficult aspect of this process has been discovering participants.  ways  to  make  the  findings  accessible  to  I attempted to accomplish this in two ways.  the  Part of  the course requirements in this program was the creation of a poster which displayed the results of the study.  Once I was done with the  poster myself, I presented it to a meeting of the group and went over it with them in detail. advocacy  committee  who  have  At that point I gave it to the self since  used  it  as  representation of the research at other events.  a  more  visual  The final report  for the focus group research was more problematic because it was written in academic language and did not lend itself to easy plain language  translation.  document into a parallel make  complicated  I text  documents  resolved  the  format. more  dilemma  by  putting  the  Parallel text is a method to  understandable  by  putting  a  simplified summary of the main ideas along side of the main text  120 (for example, two columns of text on a page, one containing the original document and the other displaying the summarized version).  The process of making my research methodology and the findings accessible  to people with intellectual  disabilities  has been a  challenging one and, to some, it may appear to be overwhelming.  I  found however, that it was not as difficult as it first seemed. Most of the modifications were common sense solutions and did not require any special skills or techniques on my part.  Certainly, it  was time consuming work, and more time consuming than if I had been doing research with non-disabled people, but I found the results to have more than justified the effort.  Directions  for Future Research  The potential for research in this area is significant.  As I  stated earlier, my intention is that this study help to contribute to a growing body of research that is based on the experiences of people with intellectual disabilities.  I hope it has dispelled some  of the myths regarding interview research with people so labeled and shown some of the possibilities which exist for further studies. Some of these possibilities include interviews with people who are in receipt  of more  example, people  services  living  than these participants  in group homes or other  attending vocational support programs.  were, for  facilities and  I believe that there would  be significant differences in the experiences of these people and  121 this is an area which is largely unexamined.  As well, research with  people who are not as involved in self-advocacy (and as such, not as experienced with speaking out) or people of other cultural groups may also bring out different issues. Another  group  which  has  been  sorely  neglected  by  researchers has been people with more severe disabilities 1996).  social (Watson,  As all people with intellectual disabilities have frequently  been dismissed by many researchers as impossible to research in a qualitative completely  manner, ignored  people because  with of  severe  their  disabilities' have  lack  of  verbal  because of difficulties in obtaining informed consent.  been  skills  and  I admit to  being complicit in this silencing as well with my own research.  I  specifically chose self advocates because they are generally more verbal, more outspoken and, to be blunt, easier to research.  People  with severe disabilities, however, should not be deemed ineligible simply because they are more work. shows  that  research  they  can  (see Booth  participate  Research has been done which in  and  understand  qualitative  narrative studies.  & Booth, 1996 and Stalker, 1998), including o The biggest modification which must be made to  enable people with  severe  researcher's  timetable.  disabilities  to participate  is to the  In order to ensure the accuracy of the  data, time must be taken to get to know the participants and their lives.  For, as I discovered, there is far more going on in the  lives of people with intellectual disabilities than first meets the eye.  122  Conclusion This thesis is the result of a long, frequently frustrating, but finally rewarding process.  When I first began work on my MSW,  my vision was to develop theory and practice techniques for use in counseling people with intellectual disabilities because there were (and still are) so few psychotherapists in the community who were willing or able to support them.  I soon realized that the more  important question was why do people have  such  a need  for  therapy  in  with the  first  intellectual  disabilities  placel  In trying to  answer this question, I discovered the literature which describes disability as a social phenomenon rather than a solely medical one. I  came  to  understand  that  the  depression,  violence  and  self-  injurious behavior I had seen in so many people for so many years was partially a consequence of living in a society which despises them rather than a result of their impairments. What was missing from this new understanding though, were the voices  of people  with  intellectual  disabilities.  Certainly,  as  disabled people, those with intellectual disabilities have a good deal  in common with those who have physical  disabilities, but I  could not believe that their experiences were equivalent.  I set out  to do this research with that as my goal; to find out what their experiences  were  and  how  they  felt  about  their  lives  as  intellectually disabled people. I feel that my research has been valuable in three specific ways.  First, I believe I have helped add the voices of people with  123  intellectual disabilities to the disability rights literature and have shown that the social model is incomplete without an analysis of their experiences.  I also believe I have shown that qualitative  techniques  (and traditionally verbal-skill dependent techniques, at  that)  be  can  used  successfully  with  people  with  intellectual  disabilities without compromising the integrity of those techniques. 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Where would you be living? What would you be doing for fun?  ©  Would you have people helping you do these things?  If yes: © Who would help  you?  Possible Prompts: Paid staff? Families? Peers? Social workers?  © How would you want them to help  you?  Possible Prompts: Would you want to live in a group home? Would you want live-in staff in your home? Would you want to have someone around only when you need them? Would you want one person to be a helper or lots of people? Would you decide what help you need or would your helper? Would you want to organize and hire your helpers/staff or would you want someone else (like a social worker/family member/advocate)to do it?  i f no: © Would you do these ® Are there  things  any reasons  on your  own?  why you wouldn't  want any  help?  138  Appendix D  Interview Question Guide  -fcThese are general guidelines for discussion only*  When we had the discussion group in February, we discussed a number of different things. I would like to talk some more about those things with you to get a better idea of what it's like you.  O  What have been your experiences with ... school? finding a place to live? finding a job? social workers? financial workers? institutions? your family/foster family/caregivers? personal safety and violence? friends/social networks?  @ What things do you think need to change? life better?  What would make your  


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