Chris Rivers

541 Days Road, Kingston, ON K7M3R8, CA

The Reclamation Project: The Value of Living Life at the Helm

Stories of life in an institution and the voices that closed them

Chris Rivers

My first experience with institutions, and those that lived there, was in high school. I was taking a Sociology class and we went on a field trip to Rideau Regional Centre. When we arrived, we were briefed on the institutions’ history and divided into groups to tour the facility. Here was a place with a theatre, bowling alley, gymnasiums, and outdoor tennis courts. The indoor swimming pool had a state of the art interior that could be entirely four foot deep or have a section removed and have a deep end too. Rideau grew a lot of its own produce, raised animals for meat and had its own laundry service. Meals at the cafeterias and wards were to a very high standard.

We were all very green in this subject. When visiting a medical ward at the very back of the hospital, a fellow classmate and I got into a conversation about the clients with one of the Registered Nurses and subsequently got left behind. Upon coming out of the ward, we retraced our steps back up the middle of this huge place, where hallways off it were ¼ mile long. I believe the main one that we were on was a mile long. We walked back to the start of where we had begun our tour. On our way, individuals that we came across in the hall made us quite nervous as we had never before seen individuals who were affected with physical and mental disabilities. There was an individual with severe cerebral palsy. He was staggering and probably saying hi in speech that was unrecognizable, sounding somewhat like a drunk. We managed to find our way back to the start and waited patiently for the return of others to leave.

With education, and experience shared by staff at this facility, we soon learned how and why these places had become home for so many.

After high school, the first Mental Retardation Diploma Course was offered at Algonguin College. The course would be 50/50, with training at the facility and classes at the college. It was a two-year program and, while taking it, was told of a man called Wolfensberger who was bringing normalization to these individuals. A few of us piled in a car and took off for a two-day conference in Toronto to hear all about it. We came back full of great expectations for the future, excited to hear there was going to be a new direction for caring for these individuals.

Upon graduation, we landed in the forefront to downsize facilities like Rideau Regional Centre, Orillia and Southwestern. It was an exciting time. I worked at RRC for a year then transferred down to Prince Edward Heights. PEH seemed to be the greatest place where this evolution was taking place. I came from a huge building, isolated from society, that was doing its best to provide everything it felt that their individuals needed, to one that enveloped moving to the community and becoming part of the community. Individual houses provided homes for four people instead of wards of, by then, 20. Institutions had also been places for individuals who were down on their luck, and those with little education, to be placed and cared for. Whereas here, with their own room in their own small house, they could obtain the knowledge to live in, and be a part of, the community.

Prince Edward Heights was getting clients from all of the large facilities, and a few smaller ones, and sorting them into training areas to best meet their needs. Some would start off on the wards and be initiated into the community with programs to benefit this transition. Others went to areas in a Training and Rehabilitation Area (T&R). T&R was divided into areas for children, people who were deaf, teenagers, young adults and adults, to name a few. Some individuals only needed brief training on life skills and activities in the community, and moved on very quickly. In these areas, individuals came to learn personal skills and abilities to live in group homes, family homes or individual support programs in communities. It was an amazing time to see individuals, for whatever reason society had deemed they needed be in such a place, to be cared for and be able to move on.

Parents had been told many years ago that they should place their child in an institution for numerous reasons. They were told their child would get better medical care/medications, or their child would grow to be burden on the family and it was best to put them in now. It was best to put them out of the way when they were young as it wouldn’t be as hard as doing it later in life. Some parents having large families were told they had other healthy ones and to leave this one in care. It was a very traumatic time for parents and families to make the decision that came highly recommended by their doctors and the specialists whom they were dealing with to provide care for their child. This was a time when doctors and law enforcers were highly regarded for their advice and opinions, so painful decisions were made to carry them out.

Then, all of a sudden, society was telling them “Oh no, that’s wrong, your children shouldn’t have been placed in there, it’s all wrong. It’s a terrible place.” So, here was staff now not only counselling clients in their moves to community but also counselling parents and families that this change was happening. Staff were convincing them they had provided the best care at the time, and that times had changed and more was being offered for their child in the community. Parents were told that we were not expecting them to take the child/adult home, but to allow the individual to maybe live in a family home or group home in the community. Families who were running into issues with their children at home, were being counselled on how to deal with issues at home with training provided by staff thru the facilities. Clients wanting to learn to live in the community, who had a fear of dogs, were given programs to desensitise themselves and overcome their fear. It truly was an amazing time in the field. Bonds between staff and clients were developing to counsel and guide individuals through these transitions.

Then, with the 80’s, came government cutbacks and these big institutions had outlived their purpose. No longer was it felt such living situations were needed. Unfortunately, some smaller places like PEH could have still been used for the above use.

Closing down completely was drastic and became a ‘them vs us’ situation. Local Associations were opening up, with staff untrained in the development of individuals, and budgets that didn’t afford proper coverage and care. This restricted individuals to be able to see and do things that they had previously enjoyed. For instance, things like renting the local ELK Hall for seasonal dances and activities, traveling to Disney World, Nashville and surrounding cities for museums and zoos.

Staff from institutions were bad. Even the schools they had come from were saying staff were not in the forefront of normalization and closed to their ways. Yet, these staff had been the forefront and were still assisting those for transition.

Government also closed supports in the community that families who had kept their children at home had started to use. These provided not only schooling but day programs for those under the age of 21, to assist them to support their children at home.

I have been a staff in the community for the last 30 years and the promises made by government to support and provide services to the people displaced from the large institutions have not materialized. Agencies have faced such a lack of funding that, unfortunately, many individuals have not been allowed to continue the experience of becoming part of the community. Lack of funding has cut programs. Ideas of equalization of training and jobs have made programs once offered, now cancelled. Now programs for individuals who enjoyed helping small business and industry, for the little part they played in the whole, have been cancelled. Families, now, are lacking the support to the extent they need in order to support their family member. Unlike parents of so called normal children, they do not get the opportunity to see their child grow to an age where they can move on to a caring supported home so that Mum and Dad can go on and enjoy growing old, knowing their child will be cared for if anything happened to them. This is especially true if their child has behavioral issues, because the care and support is not there for many.

So where do we go from here? Back to small nursing home situations, segregation from society only this time in small homes throughout the community????