by: Audrey King, Fall 2000
Audrey King, M.A., is an internationally known writer, speaker, and advocate on disability issues. A trained rehabilitation psychologist she is the author of two books, Count Me In (1985) and There's Lint in Your Belly Button (1987), both of which focus on integration of persons with disabilities in society. Ms King has been using ventilator, electric wheelchair and personal assistance since 1952.
As a child in the 1950's, I spent two years in a rehabilitation hospital following polio. Parent visits were from 2 to 4 p.m., weekends only. Siblings could be seen only through a window or on excursions out of the building, if you were so allowed. A strict authoritative demeanor ruled throughout, for this was the approach of the time. Therapy and food were forced and there was zero tolerance for cry babies. None of us questioned, complained, or challenged our circumstances at the time. This was the norm, yet I can still recall the feelings of warmth and security when back with my family and the later anxiety and confusion when my parents were told about a "lovely home for children like me beside the sea." I was lucky. I knew I still "belonged" to my family. They had no intention of seeing me separated again. Others were not so lucky. They grew up in institutions where parents could not visit and were not involved. Many adults, institutionalized as children or adolescents, now share stories both heart wrenching and horrific. The impact of being removed from your family, seemingly forever, without really understanding why, of living apart in a building labelled a "Children's Hospital" or "Home for Incurables", of having significant life altering medical and surgical procedures done without real understanding, involvement, or consent, of having little or no real opportunity to learn community living skills and develop meaningful relationships within the "real" world cannot ever be truly measured.
During my past 30 years as a rehabilitation professional, I have been involved in issues of institutionalization, both as a participant in facilitating placement, as well as in assisting institutionalized people with limited physical and experiential skills to move back into the community. I've also advocated with others in the community to establish viable community alternatives to institutionalization, such as Support Service Living Units, Outreach attendant programs, and Ontario's Direct Individualized Funding program for the provision of attendant support. I've heard many times, first hand accounts of what happens when people lose their personal power and autonomy within institutional structures. I've seen the vacant, hopeless faces of those who live within. As a young student on the threshold of my career, my first encounter with institutional management of people was during a class visit to Kingston's Penitentiary for Women, followed soon thereafter by visits to Rideau Regional, near Ottawa, and Huronia Regional Centre for "the retarded", in Orillia. The realization that humans have power over other humans, putting them away and controlling their basic human needs and freedoms, troubled me for weeks. The realization that many "inmates" were obviously intelligent and capable, but locked into bodies and systems which did not allow their abilities to be expressed, made me angry and afraid. The spectacle of hundreds of excited thronging humans eager for individual attention stayed with me. A 20th century souvenir, a small pink gilt-edged bone china mug depicting a building and the words "Orillia Asylum", said it all. Congregate solutions for dealing with deviant humans who did not fit the norm began in the 19th and 20th centuries. Treatment was basic, often harsh and cruel, with survival of the fittest being the key to existence. These settings were well chronicled. Charles Dickens, amongst others, writes about the lot of orphans and those who lived and worked in the Poor House. Thomas Beer writes about the treatment ofthose who were mentally ill. The emphasis was on deficiency and little was understood about the causes and cures of physical and mental conditions. Even less was understood about human dynamics, role relationships,and the effects of power, authority, and control inherent in the institutional management of people. Indeed, it is only during the past decade that we've come to realize that health and well being are not so much related to the absence of disease or injury, as they are to being in control of one's life and circumstances (McCain & Mustard,1999).
During the last few decades, we have acquired a greater understanding of the limitations of institutionalization. Irving Goffman, in Asylums (1961), describes institutions to be: "A place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life." Some might argue that institutionalization per se is not all bad and indeed, in keeping with the times, efforts have been made to involve residents in "patient-centered" philosophies and resident councils. Proponents argue that congregate living under the supervision and management of others is often the resident's choice and sometimes the only apparent solution for those who cannot manage his or her own supports and services. The beneficent intent of institutions is to provide a safe and secure environment for a large number of persons with similar needs in a cost efficient, fiscally responsible manner. Such an environment may be appropriate for those who are unable or no longer able to participate in society for reasons of disease or disability. But such a structured, restrictive environment often creates insurmountable barriers for those whose needs are not those of the majority, as well as those who yearn to participate in society and face the challenges and goals inherent in pursuing life's normally expected social, educational, and vocational ambitions. Institutional structures pose a consistent dynamic tension between individual autonomy and system procedures, which are often resistant to change and necessarily geared to costs and procedure efficiencies. It is generally easier (and cheaper) to provide service to someone who is bedridden and unresponsive, making no demands, than it is to someone who needs to get up and dressed every day and has expectations regarding choice of clothes, schedule flexibility, and personal autonomy. Consider Ken, for example, a quadriplegic man needing personal assistance to get up and to bed every day. He could not maintain his pre-injury employment outside the nursing home he lived in, or his private relationship with his girlfriend. The frustrations of trying to change care routines so as to be up and ready by 8 a.m. every weekday morning, as well as negotiate to stay out until 10 or 11 p.m. in the evenings, soon led to unemployment and loss of a potential life long mate. Such were the impossible situations of many in the 1960's who joined forces with family and friends to seek supportive community living solutions in order to achieve a quality of personal life which was closer to normal. These were the beginnings of advocacy initiatives towards de-institutionalization.
About Audrey King
Audrey King, M.A., is an internationally known writer, speaker, and advocate on disability issues. She is the author of two books, Count Me In (1985) and There's Lint in Your Belly Button (1987), both of which focus on integration of persons with disabilities in society.