Originally published May-June 1994
Ed Roberts: Interviewed by Lucy Gwin
If you’re on a respirator (this gets very personal for me) often the state won’t give you the care you need. They give you to an institution. The segregation is so bad, the situation so awful, that people don’t see any hope for themselves.
So you say you want to die and you wind up getting help from lawyers. Lawyers often do this pro bono, help you go to court because “I really feel for you,” and you get a judge who will say, “Oh you poor man, your life is so bad, and you have no future and I can see why you want to kill yourself.”
That outrages me. The issue is not the right to die. The issue is to offer services to people who live in their own apartments with attendant services. Then pretty soon they can get back to life. …
Despite all this, I remain optimistic. We are going to bring more people out of institutions and we are going to help people get the kind of freedom and empowerment they need. …
We have ADA now. We can talk about careers, not jobs. We’re not objects of charity, we’re people with rights. Our status is changing. Our mental attitudes have to change, too. We’re still begging, aren’t we? Still got that old attitude. Thinking it’s a privilege to work and earn our own livings.
We’re talking about inclusion here.
What’s holding us back? We’re having a hell of a time closing state institutions. There’s tremendous resistance. But the institutions will close. They’re dinosaurs.
There are lots of ways to resist. It has to come from inside us, doesn’t it? It has to come from our belief that we have a right to be in the society, in the community. That we have a right to be there and do what we want to do. If the community’s not ready for us, they’d better stand back. We’re coming. We’re already here. We’ve already made some changes and we’re going to raise more and more hell until the real change has come.
Ed Roberts, born in 1939, died one year after this interview appeared in NM. Paralyzed from the neck down by polio at age 14, he went on to co-found the first independent living center, in Berkeley, Calif., and serve as director of the California Department of Rehabilitation. He was a husband and father, an international speaker, a MacArthur Foundation “genius” and the creator and president of the World Institute on Disability in Oakland, Calf. He held several degrees, including a Ph.D. and was also a teacher at the University of California at Berkeley.
He once summed up his philosophy this way: “Independent living is a psychological idea more than a physical concept. I’m paralyzed from the neck down, but I’m completely in control of my own life. People see me and they say, ‘Well, if he can do it, why can’t I?’”
He understood that one of the main obstacles to inclusion came from the traditional way that people, businesses, institutions, and government thought about disabled people. The problem was their attitude toward “the disabled” or “the handicapped” did not allow for consideration of an individual’s potential. In a classic 60 Minutes interview with Harry Reasoner, Roberts, speaking in between ventilator breaths, tried to enlighten viewers in simple terms: “There are very few people, even with the most severe disabilities, who can’t take control of their own life. The problem is that most people around us don’t expect us to.” That 14-minute video is still available on YouTube and is well worth watching.