Published in Inroads, the newsletter of Citizen Advocacy Eastern Suburbs, Issue 7 (August, 1998)
These are located on the Citizen Advocacy Network website,
in the section on articles and policy documents.
Recently, our programme undertook to recruit a citizen advocate for a man whom I shall call Tom. Tom has an intellectual disability (Downs Syndrome) which is severe; he is non-verbal, and seemingly unable or unwilling to reciprocate -- he rarely acknowledges the presence of others. Tom lives in a large hostel with other people who have intellectual or multiple disabilities.
As is customary in the protege recruitment phase, we (the two staff of Citizen Advocacy Eastern Suburbs) have been spending time with Tom, to get to know him better: to learn about and appreciate his past and present experiences, and how they have impacted on him; to identify the key issues in his life and, correspondingly, his significant needs. As people involved in Citizen Advocacy are aware, gathering, understanding, and reflecting on such information, painful though it may be, is of fundamental importance in clarifying the rationale for, and guiding the process of, recruiting a suitable advocate for a person.
Accordingly, several weeks ago, we arranged to pick up Tom from his hostel. More often than not, when a person with a disability travels with us in the car, we invite the person to sit in the front-seat, next to the driver. On this occasion, as we walked towards the car, before we could suggest to Tom that he may wish to sit in front, he reflexively headed for the back-seat. We were left with the impression that Tom’s response was ingrained (confirmed in our subsequent contact with him), that he was not accustomed to -- perhaps even disallowed from --sitting in the front-seat when travelling in the hostel-owned vehicle driven by its staff, which was effectively his only mode of transport. Whilst Tom’s apparently habitual behaviour may have provided a glimpse of the lamentable (but not surprising) hostel practice which reinforces the service-provider/client status differential, his response could also be seen as a sad metaphor about the general fate of people with disabilities in our society: to be considered of little importance so as to justify relegation to the back-seat of life.
In order to understand the context in which Tom and other people with disabilities have become back-seat passengers on the road of life, one must be aware of the prevailing values of our society and the derivative implications for its "lesser" citizens. For example, because our society places high value on such attributes as intelligence, competence, independence, and productiveness, those who personify the opposite of what society values (which clearly include people with disabilities) become devalued. Professor Wolf Wolfensberger, the founder of Citizen Advocacy, defines social devaluation as the process of attributing low, or even no, value to a person or group on the basis of the presence of some characteristic -- for example, intellectual impairment -- which is seen in a negative light. Given the dynamics of devaluation, people thus perceived by the larger society to be of low worth or value are treated in ways which reflect their second-class citizenship. Typically, people who have low attributed social value, including people with disabilities, encounter negative responses and wounding experiences -- relentlessly. Many of these wounds are associated with losses suffered by people in the course of their life. The sorts of painful losses endured by Tom (recounted below) are common experiences for so many people with disabilities, as a result of being assigned low status.
Absence of family, and any semblance of family life
Tom was abandoned by his parents at birth. Evidently, Tom’s family did not wish to acknowledge or know him, and the severing of the umbilical cord came to symbolically represent irrevocably cutting him out of their life. He was thus relinquished to the human service system and, consequently, has missed out on the care of a family in his upbringing. Aspects of family life, such as gatherings to celebrate birthdays and other important occasions, are alien to Tom. Without any family presence, he has been deprived of being known as someone’s son, brother, nephew, cousin, and so on. The absence of family photos in Tom’s room is a stark reminder of the famine of this primary source of relationship in his life.
Loss of freely-given relationships
Tom has never known what it is like to be part of a freely-given, enduring relationship. He simply does not have anyone -- not a single individual -- who will voluntarily relate to or speak for him.
Instead, Tom’s relationship world is comprised of paid staff and other (similarly rejected) clients, but no-one from either group with whom he is personally close. Furthermore, given the characteristically high number and frequency of turnover of staff at residential and other services for people with disabilities, one can hardly even begin to imagine the social turbulence caused by the rapid succession of people who have entered and then disappeared from Tom’s life!
Deprivation of experiences and opportunities which most people take for granted
It is self-evident, even from a cursory reflection on Tom’s life, that his experiences are not typical of -- indeed, vastly different from -- those of most other citizens. Important milestones, such as graduating from school and celebrating one’s 21st birthday with family and friends, have eluded him. Even everyday activities, like going to the local shops, cannot happen spontaneously for Tom, and instead, such occurrences become hostel staff-dictated exercises governed by the kind of regimentation and ritualism endemic to a large, formal service system.
The narrow range of experiences which have characterised Tom’s life is a reflection, at least in part, of the absence of developmental opportunities afforded to him. For example, he has been denied the opportunity to benefit from any type of education, vocational training, or work. In fact, Tom’s only regular activity is to attend a so-called community access centre (which has very little to do with "accessing" the community in any meaningful way), once a week. Most of the time, though, Tom can be found languishing in his room, in mind- and spirit-numbing tedium, so that with very little happening, virtually every day seems like the same non-eventful one being repeated over and over again.
Loss of control over one’s life
As a life-long captive of the human service system, Tom has little control of major or even less significant aspects of his life. Regardless of the level of support Tom would need to make and communicate decisions, he has never been involved -- in any way, to any degree -- in decision-making in regard to such matters as where he lives, with whom he lives, what he does during the day, or what type of food he eats. Others have shaped the course and content of Tom’s life, and their decisions have rarely been based on a genuine concern for his welfare. For example, we have reason to suspect that Tom’s interests were sacrificed on the altar of administrative convenience several years ago, when he was moved from a more congenial residence to his current hostel -- probably because it was the most expedient way to create a vacancy at the maximum-capacity residence so that another person, whose family had been lobbying for suitable accommodation, could move in and "fill" Tom’s place.
Denial of individuality
Tom, like so many people with disabilities, has been denied an individual, personal identity.
Forced to live with a large group of people with disabilities, Tom’s impairment is assumed to be the sole characteristic which defines his identity -- an identity thus assigned to him and which he shares with his co-residents and other people with disabilities. Indeed, the very assumption that the "common denominator" of having a disability renders all people alike, has provided the (often unconscious or unstated) rationale for segregating and congregating people with disabilities. For Tom, those qualities which make him unique -- his personality, his distinctive strengths and talents, his interests, his preferences, etc. -- have been overlooked or ignored. Instead, the clinical label of Downs Syndrome has eclipsed his individuality and humanity, as exemplified by one hostel staff member who stereotypically and insensitively ascribed Tom’s behaviour and mannerisms to that of being "a Downs."
Lack of valued social roles
It may be obvious from the above account of Tom’s impoverished circumstances that he holds very few valued social roles. Culturally valued roles which most citizens naturally occupy or aspire to adopt -- such as the social role of a family member, friend, student, employee, or homeowner -- have hitherto been unattainable for him. A corollary to the above is that the lack of beneficial opportunities and activities for Tom can be attributed to the dearth of valued roles accessible to him. Sadly, Tom’s life-defining role is that of a client of the disability service system, which is manifestly devoid of social value and its associated opportunities and experiences.
It is evident that Tom has experienced life from its back-seat. He deserves better. Given the losses Tom has endured, he remains isolated and vulnerable. He needs a citizen advocate who will speak for, and stand by, him. To that end, I hope that we don’t fail him.
The themes of the dynamics of devaluation, the wounding life experiences of people with disabilities and other marginalised groups, and the importance of valued roles for such persons, are explored in depth in the theory known as Social Role Valorisation (SRV), developed by Professor Wolf Wolfensberger, the founder of Citizen Advocacy. The highest goal of Social Role Valorisation is the attainment and/or maintenance of valued social roles for people with disabilities and other groups who are held in low esteem in society, as a strategic defence against their systematic devaluation.