Raymond’s Room

People with disabilities: The last legally segregated minority?

Thirty years ago, as a young man working at a facility for children with autism, Dale DiLeo was shown a tiny, hot and smelly bedroom. Reserved for up to four young men with autism, those least trusted by staff, this room was locked—from the outside—all night long. It was named after Raymond, the room’s perennial resident.

In a new book called Ray-mond’s Room: Ending the Segregation of People with Disabilities, DiLeo makes a compelling case that today, people with disabilities are still locked away from the rest of society. They may not be necessarily housed in rooms like Ray-mond’s, but they are placed in facilities and programs run by a public monopoly unwilling to change.

“People with disabilities are the last minority group in which legal segregation for housing and employment is still routinely provided,” writes DiLeo. “And their lives are controlled by one of the last publicly funded monopolies in America today.” Raymond’s Room outlines how the continued rampant segregation of people in day and residential programs, sometimes in institutions, sometimes in the community, has stifled the potential of millions of people to live quality lives.

The 230-page book mixes memoirs of experiences, both humorous and sad, with illustration and practical advice. DiLeo traces his career from direct care in an institution to international consulting in the disability field. For the most part, he said, his early services, like many disability services today, were delivered in specialized, separate settings. These places were, and still are, segregated and damaging, he asserts. “I believe the disability field is still stuck in an obsolete model that is ineffective, morally wrong and resistant to change. Every day the number of people going into segregated programs far exceeds those in more integrated ones,” said DiLeo.

Sure to be controversial, Raymond’s Room not only takes aim at institutions, but also challenges the notion that group homes and sheltered workshops are cutting-edge programs. He calls the current system the “disability industrial complex,” a comparison to Eisenhower’s warning of the military industrial complex over forty years ago.

DiLeo notes that we spend billions on services that have largely failed to deliver on their promise to provide very vulnerable people decent homes and jobs. And the blame for this failure is often thrust back to the individuals themselves, with professionals saying people are not capable or ready for such things. But, according to Raymond’s Room, the know-how to provide cost-effective supports, for even those with the most severe disabilities, is available now for jobs and homes. Still, he discusses the real challenges people with disabilities are up against – how our society negatively perceives those who have a disability, and how these perceptions translate into discrimination.

Said the author: “People with disabilities need not live in isolation from the rest of us. Their lives need not be defined by their disability. And they should not be subject to programs that segregate them for employment, housing and recreation, programs that are largely the result of professional convenience. People with disabilities are much more capable than most people understand, and they should have opportunities to contribute to neighborhoods, workplaces and civic life.”

According to DiLeo, one of the frequent responses from the disability system to such criticism is that the system must provide “choice” for people with disabilities from a range of options, including programs that are segregated. He notes how many proponents of institutions or workshops and group homes say that people have chosen these options and that they report they are happy there. Said DiLeo: “I know that can be true, but it is an incomplete statement. I remember working to help people move out of an old institution that was in very poor condition, 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 life 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, change can appear threatening.”

Raymond’s Room is published by Training Resource Network, Inc., and can be ordered at www.raymondsroom.com or 800-280-7010