Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

The 1995 Impact issue on institution closures featured self-advocates Tia Nelis and Nancy Ward on the cover, receiving an award on behalf of the national organization Self Advocates Becoming Empowered (SABE) for its work in closing institutions. In the article below from that issue, the two co-chairs of SABE described Operation Close the Doors.

Self Advocates Becoming Empowered is a national grassroots organization of local self-advocacy groups in the United States. Our organization believes that people with disabilities should be treated as equals. That means people should be given decisions, choices, rights, responsibilities, chances to speak up to empower ourselves, and opportunities to make new friendships and renew old friendships just like everyone else. We should be able to learn from our mistakes like everyone else. Not all members of Self Advocates Becoming Empowered lived in institutions. We all have friends who have lived in them. Other members still live in institutions. We all know the stories. We know that in some ways they are the stories of us all. That is why one of our major goals is to close institutions. That is why we believe that people should live in their own communities.

This past June, our Operation Close the Doors committee met in Chicago to develop a plan outlining strategies to close institutions and to open the way to community living. This plan was adopted at the national steering committee meeting in April. The plan outlines what local, state, and national organizations can do to close institutions and how to place pressure on local and state service systems. The plan also describes how these organizations can support individuals who live in institutions and those who are moving into the community. Tools needed by local, state, and national groups were also identified.

As part of this project, we are interviewing friends and others who have lived in institutions to tell their stories about what it was like to live in an institution and what it is like now to live in the community. Hearing these stories has strengthened our conviction that those of us who are on the outside cannot rest while others are still shut away and not treated as real citizens of our communities. The following are examples of some of the stories we’ve heard:

• One person from Pennsylvania said, “[The institution] I lived in was run like a prison. I felt I had no freedom. I only got to leave to visit my family four times a year. There was no variety of foods. I feel more like my own person living in the community. I like having choices. I have always wanted to live like everybody else. I feel that these institutions should be closed down. If I had [the] opportunity to change all that I would.”
• An individual from Massachusetts wrote us a letter and said, “Many terrible things happened to me. I was yelled at by porters and nurses. One porter pushed me down the stairs. Another pushed glass into my eye. I needed surgery to have it removed. Another time my fingers were bent back as punishment. I now have friends in the community. I am able to go places. I think institutions are rotten, they are like jails. It’s worse than a prison!!!”
• A person who had lived in a New Hampshire institution remembered, “I was abused terribly! The attendants hit and slapped people and myself. We didn’t have the freedom to do things on our own. If you didn’t do what they told you, you would be locked up in a room. They forced you to do things.” He then said, “Now I live in my own apartment and I am happy… I have a tutor and two jobs… I enjoy meeting people and volunteering.”
• In New Jersey, a woman told us her story. She said, “[My sister] told me I was going to learn something [in the institution]. I didn’t learn anything good. I learned that staff say they don’t believe in hitting, but they hit me. I don’t know why. I always got beat up in the institution. My hair was pulled. I was punched in the mouth. My teeth bled. I had two operations. The first was a tracheotomy. A consumer in the institution forced a key down my throat. The second was a tubular ligation. I bled so much that they had to perform a hysterectomy. I wanted to have kids. I now have scars that remind me of those days.” She then said, “I [now] live in a supervised apartment. I have more independence. I get to do things for myself. I like going places… see trees blowing in the wind, people walking on the beach. It makes me very happy to see other people happy.”

A self-advocate from Oklahoma sums up the reason why Self Advocates Becoming Empowered has undertaken Operation Close the Doors: “Everybody has rights; just because we are different or look different does not make us have to be in institutions. We are people just like you and anyone else, so start treating us like other people, and not animals.” Some of us from Self Advocates Becoming Empowered were at the White House for the celebration of the Americans with Disabilities Act. The President told us, “We have made great strides as a nation in fulfilling America’s promise of common sense justice. Still, much remains to be done.” We know we must do something. The first step in “all that remains to be done” is to set our people free. End their exile. Join us and our allies in ending this long sad chapter in America’s history.