27. The impact of Normalization and Social Role Valorization on my life
p. 475-476
Texte intégral
1In 1960, about 10 years before the philosophy of Normalization was developed, I moved to Oxford Regional Centre. I was 21 years old. I had lived at home with my family until then, going to high school, having regular friends, getting into regular trouble, learning how to drive, and all those typical things. My parents and some friends were advised by the doctors that my epilepsy would be better controlled in the institution, so there I went.
2What hit me first, and what I remember most, was the regimentation. It was a lot worse than what I imagined the army would be like. There were about 7,000 people existing there at that time, in 1960.I can’t say living, we existed. At the time, we were called inmates. We spent all our time on wards or in “cottages.” The only activity was listening to the radio that the staff controlled. They picked the station and the volume. They thought we should listen to childish programs. I slept in a room with 14 other people I certainly wasn’t related to. I hadn’t even met them before. We did everything there. We ate, slept, drifted around all day, according to a mysterious schedule developed by someone I never knew or saw. You weren’t considered part of it.
3I had 18 inches of space between my bed and the wall. That was my space. You couldn’t decorate your patch of wall because you never knew from one day to the next if you were going to be moved. I had two sets of institutional clothes. You had to use their dentist, their doctors, I didn’t even have the right to pick my own barber.
4I found the empty time unbearable. In those early years there was absolutely nothing to do. You couldn’t go outside unless you were escorted by the staff. You couldn’t even read. My father would bring me books from the library so that they would not take them away. You never had a chance to read the newspaper and find out what was going on in the world. You were already isolated enough, but that kind of thing made you feel even more cut off.
5I went to ceramics for the first 3 years just so I would have something to do with my hands. After that, I luckily managed to get a “job” in the storage department, where all the supplies for the institution were handled. I knew someone who was quitting, and I asked him to tell the boss that I would be interested—no pay, of course—but at least I was busy from 9 to 5 each day.
6I spent a lot of time on the punishment ward, especially at first, because I hadn’t learned their rules yet. Most of the time I was in the time-out cell, no clothes, bare walls, and occasionally I was just on the ward. Mind you, the door was always locked. I figure I spent about 9 of the 18 years there. You were always heavily drugged on “D” ward. One major misdemeanor was looking at members of the opposite sex. I was often sent there for that and other misdeeds like getting angry or refusing to take medication. I wouldn’t take some medication that they tried to give me because I didn’t know the reason for it and I was afraid of the side effects. We knew we were being used as human guinea pigs.
7By 1972 or 1973, we were called residents. They started talking to me about getting out. It was just talk, though. They did set up a life skills program, and eventually I was moved to a room that I shared with another resident. We could hang pictures on the walls and rearrange the furniture. Around 1977, they also started paying me $3.50 a week for my work in the stores. Looking back, I know that was the readiness training model. I didn’t really care, because the only thing that kept me going was the thought of getting out. I always kept that ray of hope in my mind.
8The “moving out” that I had longed for just happened one day in 1978. At noon someone told me there was an opening in a group home in Ingersol and I was going there at 1:30 that day. I wasn’t asked, and my parents were not even told. In fact, my parents were not told until I called them 3 years later. I had lost contact with them. I wondered why they hadn’t called me. When we finally talked, Mom said she was sorry I was out because she thought I was better cared for in the institution, and that she did not have to worry about me there. I told her I was the one having to live with the life in that place and I was glad to be out. That conversation was really hard. My brother and sister had known about the move, but they had kept this from my mother. That was also hard, but the hardest thing was that my dad had died and no one had even told me that he was sick.
9There were 10 people in the group home, and during the day I was bused back to the institution to work. I didn’t like living there. I realized that to have the life I had dreamed about for all those years, I would have to advocate for myself. I got moved to a different group home in another town, and within a short while I was in my own apartment in the Supported Independent Living Program. I had gone right through the continuum. That process took 22 years of my life.
10The most ironic thing about that experience was that the problem of uncontrolled seizures, the reason for the move to the institution in the first place, was only resolved after I left when I found a good doctor on my own. So much for that helping system.
11In about 1980, I attended a PASS course. The course really made me stop and think. My attending it caused a major incident. I was working in the sheltered workshop. The director called me up on the floor in front of other people and said: “Pete, you had no right to take that course. Who paid for it? It is for my staff only. Whose time did you use?” My response was: “It was my time, my holidays, I paid for it. The reason I took it was that I was curious to know what the staff were taught. As well, I was an interested self-advocate, and we all have the right to associate with whomever we please and further, as of today, I am walking out of this workshop for good.” I quit the workshop that very day. The association director raised the roof. Imagine someone like me attending such a radical course. After 20 years of institutionalization, I still didn’t control my own life. Maybe he was afraid I would uncover the truth about the system. Of course, I didn’t need to take a course to learn that the so-called “helping system” hurts.
12Since then, I have learned more about Normalization and Social Role Valorization. I know that this helped me to realize that I was not the problem. It made me question the way I had been treated. It also made me realize I had to respect myself.
13I think Normalization and SRV have played roles in helping people like me to lead better lives. People now try to help people who have been labeled to live a more normal life in the community. We now have more diverse communities where people with different abilities can learn from each other. I imagine that without Normalization, I might still be in the institution. It was due to this theory that they thought about deinstitutionalization.
14My story is still evolving, but now I choose the direction. I live in a different kind of institution—marriage. My wife, Terry, and I are building a life together, and we think about the future because I have put the past where it belongs—behind me. I carry out a lot of different roles that I am proud of. I am a husband, the Director of Information and Resources for People First of Canada, a co-op member, a board member, a colleague, a neighbor, and friend.
15Often I am a teacher, helping people realize that throughout all these experiences, good and bad, I have been Peter Park, a man who just wants to do a decent day’s work and go home at night to the place where I have chosen to live and to the people I choose to live with.
Auteurs
National Coordinator, People First of Canada, Toronto, ON, Canada
Executive Director, Brockville and district Association for Community Involvement, Brockville, ON, Canada
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