How People with Disabilities Used to Live
People with disabilities used to live separately from their friends, families, and neighbors in their community. Families who had a son or daughter with a disability would often give up their child. They would live out their lives in buildings—not homes—hidden from their community.
People who built the institutions meant well. They wanted to care for people with disabilities who did not have money to care for themselves, and provide them extra help. One of the institutions in Oregon was Fairview, which opened in 1908. Fairview closed 92 years later, in 2000.
In the early 1900s, doctors would strongly suggest families to put their child who experience disability into institutions. Those who choose to keep their family member at home, without the help the government would provide, had a hard life. It was not very common for people with disabilities to be living at home during this time. Disability was something to be ashamed of and hidden away.
One residents experience at Fairview
I was in my twenties when I lived at Fairview, from 1968 to 1969. Before that, I lived in La Grande, Oregon.
Each day, we would be woken up at 5:30 am. We could hear them coming down the rows of beds. We could hear her keys rattling. If you did not get up, they would tip your bed over. Then we would go for breakfast. It was always the same foods: oatmeal, scrambled eggs, hotcakes and milk.
After breakfast, we would go back to the cottages where we lived. Then we would leave for work. I helped people who needed physical therapy. We took them swimming. Groups of people went swimming. If they needed help, we would help them undress, or get into the pool.
We had dances or movies on Friday. Saturday and Sunday were for relaxing. Most of our days were very structured; there was little choice about what we did. When I was in Fairview, the staff watched me all the time. I did not like living there at all.
I had two friends from Fairview who I still talk to today. They told stories of seeing people chained up in little rooms.
When I left Fairview, it was very different. I could do things on my own. I could make my own choices.
The Self Advocacy Movement
People who moved out of Fairview wanted to have a voice about how they could best be helped to live in the community. In the 1970s, they started a group, called People First of Oregon, to help people share experiences about the services they were receiving.
People First groups would have conferences and meetings to talk to other people with disabilities about things like eating healthy foods and exercising, friendship and love relationships. It was important to People First members that self advocates ran the meetings—not the helpers who were supporting them.
People First taught members to have a voice. We helped them learn to run meetings and be leaders. Recently, in 2013, People First of Eugene brought members to the Capitol to talk with legislators. One member explained, “Legislators are just people, too.” People First has also written letters to share the importance of services to support people with intellectual disabilities. In to advocacy, People First also has social activities, like camping trips.
Self Advocates As Leaders
People First was viewed only as a group that liked to have fun. Some members wanted to be more involved in advocacy. They started Self Advocates As Leaders in 1998.
Self Advocates As Leaders did legislative advocacy work and other activities to train self advocates. They taught about being independent. They did presentations at conferences, sharing their experiences for parents and other self advocates. They tried to get other people involved by writing about and talking about their work. They also wrote the SAAL Connections newsletter.
Oregon Self Advocacy Coalition
Self Advocates at Leaders was funded by the Oregon Council on Developmental Disabilities. In 2009-2010, the Council wanted to get even more people involved in self advocacy, and started the Oregon Self Advocacy Coalition. OSAC replaced SAAL. It is a coalition of 18 self advocacy groups throughout Oregon.
OSAC’s goal is to bring together people with I/DD, and help them have a unified voice around issues are important to them. One of the main focuses of OSAC’s Employment Committee is education. We are having meetings with state leaders, and self advocates to talk about the importance of jobs in the community, at minimum wage or above.
Why does Self Advocacy matter?
Self advocacy shows people
- how to speak up and have a voice about things that matter to them
- how to be leaders
- the issues facing people with intellectual and developmental disabilities – through projects such as writing letters to legislators
- we can do things to make a contribution to our communities, such as get jobs
- not be afraid of people with intellectual and developmental disabilities