I was recently with John O’Brien, an important mentor to me for 40 years. John lives in Atlanta and travels the world listening to and learning from people who are working to create more inclusive and just communities.
John shared a story about a man he knew named Tom Allen. Mr. Allen lived in the New York State developmental disability institutional system from 1915 to 1985. None of us can ever imagine what that life was like for Mr. Allen.
Mr. Allen wrote an autobiography, short in length and long in wisdom. He did this over a period of years, finding the occasional staff person he could trust to listen closely to him and capture what he had to say.
I am sharing some of John O’Brien’s reflection on Tom Allen’s autobiography. Think of the word “institution” in two ways. First, as the place Tom Allen was forced to live his life. Second, as a place holder for any other word that comes to your mind.
- The institution wants to isolate you… (reach out and make friends, you have to make the effort…)
- The institution wants to cut you off from family… (remember people who have loved you even if they let you down…)
- The institution wants to control even the smallest details of daily life… (you can find spaces to be free if you learn about how the institution controls you, know your captors…)
- The institution wants to silence you… (find safe ways to use your voice, don’t give up when people don’t listen…)
- The institution makes decisions for you… (be a decision maker…)
- The institution makes you dependent… (learn to do whatever you can for yourself even if it’s hard and takes a long time…)
- The institution has low expectations of you… (make a difference to other people who have disabilities…)
- The institution wants to get inside your head and the heads of all the people that care about you… (don’t think like the institution. It wins when you give up and believe that you are no more than the institution…)
- The institution wants to own you and your past. Your story belongs to them and they edit it their way… (tell and retell your life story in your own voice…)
- The institution wants to own your future… (keep your dream alive and guard it…)
“I wanted to be part of the world and
leave the institution.” — Tom Allen
Remember, use the word “institution” as a place holder. Insert other words, feelings, ideas that come to your mind.