Book Review
Raymond’s Room
People with disabilities: The last legally segregated minority?
by
Dawn Langton
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.
