Foreword
By Bob and Anastasia Lawhead
The horror of the past collides with the dismal reality
of present day thinking in Dale DiLeo’s engaging memoir about
his coming of age in the disability profession. DiLeo invites us
into his life and mind, as well as into the one-room prison that
represents the systemic exclusion and isolation perpetuated by the
present matrix of services for people with severe disabilities. Raymond’s
Room provides poignant real-life vignettes that examine how the disabilities
services system can unintentionally exacerbate a person’s existing
life challenges.
That DiLeo is qualified to provide such accounts is beyond question. We recall
listening to him for the first time many years ago and being awed by his commitment,
humor, and passion. Over the last three decades he has witnessed and contributed
to improvements in the lives of some of the most vulnerable people within our
society. To us, he has been a stalwart colleague and trusted friend.
The issues explored within the pages of Raymond’s Room reflect the author’s
journey through learning and applying best practice within a system that remains
resistant to change. DiLeo characterizes this lack of progress as being due to
the “disability industrial complex” (DIC), an insidious bureaucracy
of traditionalists funded by methods that serve the status quo. The DIC is based
on the historical assumption that this disenfranchised group of people is best
served by specialists within isolated settings, an assumption that is not only
immoral but also ineffective, costly, and most certainly illegal.
The cost benefit to taxpayers of services resulting in integrated work and housing
has been demonstrated continuously over the past twenty-five years. The present
widespread professional allegiance to segregated services should have ended in
1990 with the passage of the Americans with Disabilities Act (ADA). That this
segregation continues to occur following clarification of the ADA’s “most
integrated setting” standard through the Supreme Court’s 1999 Olmstead
Decision is criminal.
This is the largest group in the world facing systemic discrimination in all
areas of life and represents the “last bastion of lawful segregation in
employment and housing.” The way in which we in the United States have
forced people with severe disabilities to live is a national disgrace. In the
past we didn’t have the understanding and technology to fully realize the
invaluable contributions citizens with significant disabilities are able to make.
For several decades, we have proven in communities all over the country what
people are capable of achieving. And yet, the statistics in DiLeo’s book
speak for themselves. We quite simply are not using what we know and what we
have learned to support the vast majority of individuals. DiLeo vividly illustrates
this gap between what we know and what we do. People with severe disabilities
and their families will be all too familiar with many of the experiences described
within these pages.
As the aging parents of a ten-year-old son, our concerns are escalating in a
time of blocked progress and dwindling resources within human services. It is
our hope that DiLeo’s provocative insights into a system gone awry will
ignite a revolution in people with disabilities, their families, and friends.
It is up to each of us to take the inspiration generated by Raymond’s Room
and change the world for those we love.
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