|
This is one of the most meaningful and valuable books that I have
ever read in my professional career. This book clearly and succinctly
lays out why segregation occurred and still occurs and the negative
impact that it has on the lives of individuals with developmental
disabilities.
Full Review
Keith Storey, Touro University, Vallejo,
CA, Research and Practice for Persons with Severe Disabilities (RPSD)
(Formerly JASH)
A poignant, thought-provoking book... discusses the exclusion, isolation,
and powerlessness of people with disabilities and the self-serving,
change-resistant “disability industrial complex” that
keeps people down.
Full Review
- Tennessee Disability Coalition
DiLeo... analyzes the disability care
system... everyone should appreciate his account offering insight
into solutions that didn't work and some ideas that might work better.
Full Review
- Book Review,
Quest, Muscular Dystrophy Association, Vol. 14, No. 5, Sep.-Oct.,
2007
DiLeo tries to blast away the stereotypes and the subtle but hurtful
words and invisible discrimination that often attaches to those who
are separated from society and looked upon as different… [he]
has thought about these people deeply and compassionately. … a
warm, highly readable memoir and guide to unprejudiced vision. DiLeo’s
book would interest both the disability professional and the general
reader.
Full Review
Peter Guinta, MAY 18, 2007 • St. Augustine
Record
DiLeo takes off the blinders and brings his readers intimately into
his experiences with people with disabilities over a long career.
His understanding of and empathy with people with disabilities breathes
passion into his case for tearing down attitudinal barriers which
have in themselves limited people with disabilities for generations.
Full Review
Will's Corner, April, 2001, Office of Handicapped
Concerns, Oklahoma City, OK
In 1990 the Americans with Disabilities Act passed, yet according
to the author this segment of the population continues to be discriminated
against. And he should know, having spent 30 plus years in the field. “I
went over to observe, Al was brushing every child’s teeth using the same
tired-looking yellow toothbrush,” the author writes. After
that scene at a group home, DiLeo campaigned for, and won personal
toothbrushes for each child. This unhygienic practice of toothbrush
sharing would evoke disgust and cries of outrage in any other setting.
That is his point: people with disabilities should not be subjected
to different treatment than the rest us.
DiLeo encourages a society of more independent living and
working choices to enrich the lives of the disabled. Professionals
resistant to change may argue they are providing a service which
no one wants to do... DiLeo exposes the true face behind the altruistic
mask of governmental agencies.
Full Review
Ginny Waters, Foreword Magazine, May/June,
2007
Occasionally, a book will come along that actually has the power
to change a society. Those are books like Stowe’s Uncle
Tom’s Cabin, Carson’s Silent Spring, Haley’s The
Autobiography of Malcolm X and Roots, Ginsberg’s Howl, Friedan’s
The Feminine Mystique, Galbraith’s The Affluent Society and
Sinclair’s The Jungle. There are hundreds more, of course,
and the list is rather arbitrary at best, but you can see the essence
of extraordinarily vital works. Now let me introduce you to Dale
DiLeo’s Raymond’s Room, an essential work that belongs
in the same list. If you never read another book in your entire life
read Raymond’s Room. We have worked too hard as a society to
stop segregation of all kinds to allow this segregation to continue.
–At Large, by Miles Beauchamp, Ph.D.,
Associate Editor, The Asian Journal, April 13, 2007
DiLeo has unlocked the closed door with Raymond’s Room and
invites you to join him in a more noble cause. Be assured of this--
you will not be disappointed.
Full
Review
–Don Lavin, Vice President, Rise, Incorporated, Minnesota
Dale tells the painful and searing truth—a truth we professionals
and families in the disability field need to confront about what
he rightly calls the “disability industrial complex.” Dale
begins with confessing his sorrow that he never unlocked Raymond’s
Room–a segregated, locked bedroom (in reality a timeout bedroom)
for children with autism who experienced the most challenging behavior.
When I read this, I had a flood of memories of my own experiences
at Partlow State Hospital in Alabama as a young and naïve special
educator fresh out of college and wanting “to do good.” Yes,
I, too, have “Raymonds” in my life whom I failed by allowing
the system to silence me into thinking that what I witnessed was “treatment” rather
than inhumanity. If confession is good for the soul, then Raymond’s
Room has, indeed, been good for me. It has been a catalyst for not
only confessing my inaction but, indeed, renewing my commitment to
never be silenced again. Raymond’s Room should be required
reading for all who are committed to dismantling the disability industrial
complex and replacing it with authentic inclusive living supported
by reliable allies. Thank you, Dale, for telling the truth.
–Ann Turnbull, Ed.D., Professor,
Special Education, University of Kansas; Co-Director, Beach Center
on Disability, Kansas
Council for Exceptional Children, Burton Blatt Humanitarian Award,
2006
For far too long, all of us in the system have been willing
to accept the small gains experienced by folks with disabilities
as acceptable. Raymond's Room, by Dale DiLeo, kicks the door of acceptability
back open. This book will cause all of us to rethink our roles in
building full community opportunities for all people. This book
puts reality right back in our faces. It raises consciousness, ignites
passions and brings the spirit back into our work. If you have forgotten
the story that got you interested in disability issues, this book
will be your awakening.
–Al Condeluci, Ph.D., Executive Director, UCP of Pittsburgh
Author, Interdependence and Beyond Difference
Raymond's Room describes a reality we might like to think is in
the past. Yet, it is the present reality for people with disabilities
and for society. This book reminds many of this reality and tells
a history that most do not know. Dale has provided a call to action
that should be heard by people inside and outside disability circles.
–David Mank, Ph.D., Director, Indiana
Institute on Disability and Community, Indiana University
Raymond’s Room is a stirring book which hopefully will
awaken all persons in the disability field to recognize that segregation
by disability is morally wrong and questionable legally. This
book is for ALL Americans not just those in the disability field.
I am hoping that Raymond’s Room will create the same kind
of outrage as the blatant racial segregation of the 1950’s
or the discrimination against women in the early part of the 20th
century. All persons with and without disability are created
equal and should have an equal opportunity to community life, employment,
happiness and self-esteem. We are a very long way from meeting
these goals for millions of persons with disabilities.
–Paul Wehman , Ph.D., Professor
and Director of the Rehabilitation
Research and Training Center
on Workplace Supports,
Virgina Commonwealth University
As a person with a disability and a “professional” in
the disability field, I found it to be both challenging and refreshing.
Chapters examine important and real-world issues facing us today.
This book highlights many personal experiences and lessons learned
by Dale through a long career that first began as a staff person
in an institution. Raymond’s Room was a very real
place and, for DiLeo, represents all that has gone wrong with the
Disability Industrial Complex.
–Larry Wanger, DisabilityNation
Wow! Dale DiLeo has written a compelling book that is long
overdue. A
must read for EVERYONE! It is time we stopped
segregating people and become enriched by the commonalities, or "social
glue" that we share. Thank you Dale, for addressing this
very important issue.
–Vicky
Davidson, Missouri Planning Council for Developmental Disabilities
Many of us in the disability field started out in institutions or
other segregated settings as described in this book. Fortunately,
many of us came to see that these segregated settings do not work
and now advocate for the integration of people with disabilities
into our communities. Unfortunately, too many people with disabilities
remain segregated. This book lays out why segregation occurred
and still occurs and the negative impact that it has on the lives
of individuals. This is a thoughtful book that provides insight
into systems and why they are desirable or undesirable. I wish
that I had this book to read early in my professional career as it
would have helped me to understand the larger picture of service
delivery systems.
–Keith Storey, Ph.D., Professor of Education
and
Special Education Program
Chair, Touro University, California
Raymond's Room needs to be required reading for all national and
international decision makers, leaders, presidents, politicians,
teachers, students, scholars, doctors, lawyers, film makers, reporters,
families, advocates, and disability service providers. It speaks
the unspeakable truth that all of us as members of our communities
and society at large, aided by the “disability industrial complex” Dale
describes that we’ve created, daily commit unconscionable illegal
acts and crimes disguised as "helping the handicapped."
A new social contract needs to be developed now, and not wait even
a year from now, to end the loneliness, isolation, segregation, humiliation,
torture, and the eventual unconscious death-making being carried
out just down the street from all of our homes and lives.
Death-making is an understatement of the problems brought to light
in Raymond's Room. As one of thousands of examples of United
States laws, social policies and social contracts designed to promote
the poverty, isolation and death of individuals with disabilities,
Social Security's Supplemental Security Income (SSI) laws limit the
cash assets of SSI recipients with disabilities to less than
$2000, and when an SSI recipient's assets go over that amount,
SSI's laws promote the use of excess cash (over $2,000) to
be set aside for a burial fund and a burial plot, yet such excess
cash cannot by law be saved in any type of retirement account to
provide some hope for a pleasant life after age 65. We’ll allow
you people with disabilities to fund your deaths but not your lives
and certainly not your retirement.
Our formal and informal social contracts, laws and policies promote
using the shameful and disgraceful $1.00 per week and less sub-minimum
wages paid in segregated settings, described in Raymond's Room,
to be set aside for an SSI recipient's death, and stringently
forbid any of that income to ever be set aside and saved for her
or his life and retirement. Each of us, need to understand
that our laws, policies and social contracts with people with disabilities
promote their removal, segregation and isolation from our society
and actively promote the self-funding of their deaths, but
not their lives. As Dale points out clearly, it was time to
stop such crimes against humanity and change decades ago, and it
is certainly time to change now.
–David Hammis, B.M.E., Griffin-Hammis
Associates, LLC, Ohio
As I read portions of DiLeo's new book, I realized
that many people today do not know "Raymond's room" still
exists. No one would agree that individuals with disabilities should
be locked in a room overnight for their own safety. However, in essence
people with disabilities are still "locked" away from the
mainstream of society. I hope that this book will be used for staff
training to open the eyes of future leaders in the disability field.
We need a new generation of advocates who can carry forward the message
of full community participation.
–Katherine Inge, Ph.D., OTR, Virginia
Commonwealth University Rehabilitation Research and Training Center,
Virginia
DiLeo's book is a must read for anyone who has ever
wondered how the field got to where it is and whether there are better
ways to connect people to work and to community life. It will surely
provoke the kind of debate that is necessary before there will ever
be appreciable improvement in employment and community participation
for all people with disabilities in our country.
–Richard Luecking, Ph.D., President,
TransCen, Inc., Maryland
This book challenges everyone's thoughts in the disability system
on what we are doing and where we are going. This is an excellent
resource for self-advocates, families and professionals. One of the
most significant publications I have read in my 31 years of working
in the field."
–J. B. Black, Ed.D., Training and Research
Manager, state disability agency
Over 360,000 individuals
with developmental disabilities remain in segregated day programs
and only 18% will ever get a chance at a real community job. The
paternalistic altruism behind these circumstances prevents almost
any serious discussion of the harmful images and situations they
reinforce. This is why we need Raymond's Room by Dale DiLeo:
to remind us that people with disabilities still live lives controlled
by others; that while we spend billions in tax dollars every year
on services, people remain isolated, lonely, and unemployed; that
images of frailty and inability are used daily to leverage fundraising;
that in some states people are still being institutionalized for
having committed the "crime" of experiencing a disability;
and to shake us from thinking that what Dale writes is the past,
when in fact, for many, many people, it is the present. Get this
book and read it. While you're at it, send copies to your State Director
of Developmental Disabilities and to the Board Chair of your local
disability program.
–Cary Griffin, M.A., Griffin-Hammis
Associates, Montana
Raymond's Room awakens our conscience. It challenges
are beliefs and progress in this field and suggests greater attention
to the most basic of human needs: love, respect, caring and hope.
–Richard Balser, Chief, Outpatient Services,
Dept. of Psychiatry, Maine Medical Center
Raymond's Room reminds us about our past and serves
as a lesson to those who are new to the field of supporting people
with disabilities. For new people it answers the question of "why
not?" when it comes to segregated and special settings. For
veterans in the field it serves as inspiration to motivate us to
never repeat that chapter of our history. This is a must read for
anyone who involved in supporting people with significant disabilities
whether they be family members, paid staff, policy makers, neighbors
and advocates.
–Bob Niemiec, Past-President, APSE:
The Network on Employment, St. Paul, Minnesota
Dale's message is loud and clear. It is time to end
the 'us and them' mentality in every dimension of our society. Living,
working, playing and participating in life to the fullest is the
right of every citizen, regardless of disability!
–Nancy J. Hanisch, MS, Florida APSE:
The Network on Employment
This is a one of a kind book. Dale artfully
offers readers the chance to experience "cathartic cleansing" from
their personal experience of Raymond’s Room, without excusing
us from doing what is right and just. Be prepared to look deep
within your core values. This book is as much a call to mind
as it is a call to rally and action. Chipping away a little at a
time at the wall that segregates people with disabilities has not
been successful and is no longer acceptable. Read the book
to learn why and what we must do.
–Ernesto Sanchez, Regional Manager,
Advocacy Inc., San Antonio, TX
|
