Interview: August, 2006

Q: Why did you write a book condemning the segregation of people with disabilities at this point in your career?

Dale: I spent the first ten years of my career working in or running facilities that were segregated programs. As my philosophy evolved, and my skills developed along with the disability field, I starting working more with supported employment and supported living, more integrated approaches. This is what I have been doing for the last twenty years of my career. But now, despite overwhelming evidence on the benefits of integration, I believe the disability field is still stuck in an obsolete model that is ineffective, morally wrong, and resisting change. Every day the number of people going into segregated programs far exceed those in more integrated ones. This book is my attempt to call attention to that fact, and to talk about what is possible.

Q: You compare the disability service system to Eisenhower’s military industrial complex. Is that a fair comparison?

Dale: As someone who worked from the inside of it, I think it is. Eisenhower rightly warned us is a self-perpetuating focus on maintaining funding, lots of bureaucracy, and results that don’t always make it to the people most in need. For all the paperwork, there is little real accountability to the people being served.

Q: Proponents of institutions or workshops and group homes say that people have chosen these options and that they report they are happy there.

Dale: Yes, I know that can be true, but it is an incomplete statement. I remember working to help people move out of an institution, a place most of us would agree was horribly offensive. Yet, there were a number of people who expressed that they did not want to leave, and some of their families also said the same thing. The reason this happens over and over again is that people with disabilities have not had the opportunity to make informed choices. Once people experience community live with the proper supports, in my experience, they nearly always elect to not go back to segregation. When you live in a situation for so long, no matter how inadequate, change can appear threatening. I might add, I think there is a strong argument against the wisdom of using taxpayer dollars to fund a choice that segregates people at all, besides the fact of them having inferior outcomes.

Q: What about people with disabilities who have other friends with disabilities? Why shouldn’t they choose to live or work together?

Dale: First of all, loneliness is a compelling issue for anyone who finds him or herself isolated in the community. There is no excuse for those of us in the disability field to let such a thing happen when people live and work in a community. As for friendships between people with disabilities, of course that should be supported and respected. And if people decide they want to live together because they are friends, then I think they should go for it. But that is a far cry from an arbitrary group model where people are placed into slots and rarely select their own roommates. Employment, on the other hand, is something else. Unless some friends who happen to have disabilities want to start a business together, I don’t think you can typically pick your co-workers.

Q: What is Raymond’s Room?

Dale: Raymond’s Room was bedroom in a residential facility for children with autism that I worked at early in my career. It was a small, hot, stuffy room where between two to four children would sleep. These were the kids that no one trusted or who had misbehaved during the day. Raymond was in there so often it was named after him. It was locked from the outside – those on the inside were powerless. It is my metaphor for much of the disability service system then and now.

Q: You present an argument for people with disabilities living in the community, but you also talk at length and give examples about how the community has not always welcomed people with disabilities. Isn’t that a paradox?

Dale: Yes, it is. But a big part of the reason there has been community resistance is the disability service system’s tendency to exaggerate people’s differences rather than their commonalities. Group homes are different that your neighbor’s house in so many ways, so the residents that live there are not seen as your neighbor. There have always been stereotypes of people with disabilities, but our jargon and labels and grouping have contributed to those stereotypes rather than combat them. Another problem is that many people have discomfort being with people with disabilities, mostly because they never are with them because the system has segregated people with disabilities out of their communities. When my daughter goes to school with other children who happen to have disabilities, plays with them, and finds it a natural thing, she will not think twice when someone with a disability works next to her or moves next door. And I have found many people with disabilities benefit tremendously being around others with skills they might not have or interests they haven’t considered. And if someone with a disability has a particular hobby or passion, then that becomes a basis for a relationship because they are around a diversity of people, and not just those who share their disability label.