Raymond's Room: Ending the Segregation of People with Disabilities

Raymond's Room: Ending the Segregation of People with Disabilities

by Dale DiLeo

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Overview

Raymond's Room: Ending the Segregation of People with Disabilities by Dale DiLeo

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 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. Raymond's Room makes a compelling case that people with disabilities are still locked away from the rest of society. They may not be housed in rooms like Raymond's, but they are placed in facilities and programs run by a public monopoly unwilling to change.

Using research, anecdotes, humor, and engaging stories, DiLeo takes aim at the billion-dollar "disability industrial complex" that segregates people with significant disabilities from mainstream life. Calling people with disabilities society's "hidden citizens," he describes a system that prevents people from working and living in their communities, despite techniques and approaches that can help even those with the most serious challenges work and have a home of their own.

For 230 pages, DiLeo describes the downsides to current practices in the field and then offers up proven alternatives to open Raymond's room.

Product Details

ISBN-13: 9781883302566
Publisher: Training Resource Network, Incorporated (T R N)
Publication date: 02/15/2007
Edition description: New Edition
Pages: 230
Product dimensions: 5.80(w) x 8.60(h) x 1.00(d)

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I N T R O D U C T I O N


I once worked in a place where the rules were the rules, and all of us staff were very young. It was in 1975, very early in my career, and the place was a residential facility for children with autism. Most of the residents were challenging. Some were aggressive; others would hurt themselves.
Management decided that three residents in particular must live in a secure room at night. The room was a small space, about eight by ten feet, not much bigger than a walk-in closet. It was largely taken up with two sets of bunk beds. There was no other furniture. There was also no "overnight staff," just the owners of the facility, who had a bedroom and lived in the residence. In truth, I doubted that they looked in on any of the residents in this "home" very often. So to secure the room of the three most challenging residents, the outside of the door was locked, closed with an eye-hook and latch.
From the outside. Overnight.
Was this a breach of every safeguard, fire policy, and human rights policy I now know? Of course. But because we were all right out of college and had no real training in the realities of this business, we accepted the explanation we were given by those in charge - that this was for the residents' own protection: the only solution for people so severely disturbed.
But it gets worse. This room had a radiator controlled by a thermostat in the hall. In summer it was stifling on its own. But in winter, overnight, with the door closed and the heat on, that room would get really hot. More troubling still, since the door was locked, there was a portable toilet inside. Combine the heat with the smell, and the room was simply unbearable. Opening that door each morning was difficult, and one could only imagine what spending the night inside was like.
This was called Raymond's Room.
Raymond was the room's most permanent resident. Other students were assigned there from time to time, but Raymond never moved from his room. He was the resident who couldn't be trusted, and he had been in this room so long it was now named after him.
Many things happened overnight in that locked room. I know because I often discovered things in the morning when I came on my shift. I once spent a day with a resident cleaning the feces Raymond had smeared on all the walls and beds. When I went home after work, I threw out the clothes I wore that day and took a shower that lasted an hour. How anyone could sleep in there, I do not know. How I could let anyone sleep in there haunts me today.
There are far fewer places today physically like Raymond's Room. But the kinds of lives people like Raymond must live actually have changed little. The way in which we have separated people with severe disabilities from the world, and continue to do so, is a national disgrace.
People have a tendency to divide the world into simple categories, preferably two: black and white, them and us. Regarding disability, people believe they are either in the world of the healthy or the world of "the disabled." The healthy have compassion for those in that other world, but view that kind of life as a place apart, and don't have any sense of real affinity for those in it.
I once read a performance review of a disability staff person that captures this feeling. It said, "Ms. Covington has a personality that blends in well when working with people, as well as with her clients with disabilities." These individuals, apparently, do not qualify as just plain people.
Yet, disability, as expressed in U.S. law, is a "natural part of the human experience."1 To some extent, we all are healthy, and we all have our "disabilities." Precious few of us are completely functional, either in body or mind. It is all a matter of degree. But more importantly, it is also all a matter of outlook and perception.
People with significant disabilities are society's "hidden citizens." They are the "them" to most of "us." Though often out of everyday view, their numbers are surprisingly large. For example, various studies in the U.S. approximate the number of people with developmental disabilities, including intellectual disabilities, as 1.9 million for people eighteen years or older2 to between 3.2 and 4.5 million if you include all ages.3 The number of individuals with severe psychiatric disorders in the U.S. can be estimated by those in the category "mental disorders other than mental retardation" who receive Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), the two federal programs that financially support individuals with disabilities. This was 2.9 million people in 2004.4
No matter which study is more accurate, there is undeniably a significant number of people with severe disabilities, the great majority of whom are living lives separate from the rest of "us" (those of us without disabilities). If not institutionalized, they are largely segregated in facilities or houses, many of which are not welcomed in our neighborhoods.
Those that are in "our" communities are not really a part of our communities. They may live and attend day programs in our neighborhoods, but they remain institutionalized in spirit and thought.
As children, they do not go to school where our children go to school. They attend completely different schools, or "they" must go to separate "special" areas or classes.
As adults, they generally do not work where "we" work. They attend training programs that have largely failed at getting them into the workforce. When they earn money, they make wages no one could live on. Some are legally paid less than a penny per hour for doing work few of us would want to do.
They are the last minority group in which legal segregation for housing and employment is still routinely provided. And their lives are controlled by one of the last publicly funded monopolies in America today.
Yet, the know-how to support even the most disabled of our citizens has grown tremendously. We have learned how to help people with severe disabilities get real jobs for decent pay, live in their own homes with support, and socialize and control learned behaviors that present difficulties. We also have seen profound changes in accepted philosophy and ethics about how we should view and help people with disabilities.
But there is a serious disconnect between our new-found technology and philosophies and what is happening in practice. Most of the program directors that I have met, let alone direct service staff, have little time to read journals or new books. They might go to a conference and hear new ideas, but a lot of them have expressed to me that they believe the speakers don't realize the day-to-day challenges they face. Many then conclude that their agencies cannot make the kinds of sweeping changes that are proposed.
Part of the problem with changing a system is that it is hard for those in it day after day to see what might be beyond their daily concerns. There is an old Yiddish saying that reminds us that to a worm in a horseradish, the whole world is a horseradish.
We construct our reality based on the information we have at a beginning point in time and a belief in what it means, regardless of whether it is no longer true. During a visit to London, an acquaintance told me of a story that appeared in the London Times several years ago. It seems a man heard an owl nesting in his garden. Each night, he would go outside and hoot to the owl. After several nights, much to the man's satisfaction, the owl began hooting back. This exchange went on for months. One day, the man's wife was talking to her neighbor, who told her that her husband had also been going out every night to hoot to an owl. After a moment of consideration, they realized that, in fact, both husbands had spent many months hooting to each other! I think the constant hooting at non-existent owls aptly describes our current disability system: it has not made adjustments based on new information.
Slowly, the segregation of people with disabilities is being challenged. But by and large this advocacy is not coming out of the leadership of the disability service system that serves these individuals. The challenge is coming from courageous advocates, some of them professionals, many of them people with disabilities and their families. They want something better; they are beginning to realize that it is in reach, and the system is not giving it to them, despite our own laws.
The preface to the Americans with Disabilities Act states:

"...society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem." 5

It is not just society that has isolated people with disabilities, it is the disability service system itself. I believe we already hold many of the answers to this challenge, but we have lacked the will to put them in place. History should be a guidepost, not a hitching post.
This book talks frankly about the continuing failure of the system that provides services to people with significant disabilities, from institutions to so-called community-based programs, including sheltered workshops, day treatment programs, and group homes. But it also discusses the challenges the system is up against - how our society perceives those who have a disability, and what these perceptions translate into.
And finally, it talks about the promise of the future - a time when people with all kinds of disabilities will live among "us," work with "us," and attend "our" schools, churches, and social events. This will be a time when people with disabilities will not feel a need to hide, disguise, or deny their disability. In fact, depending on the disability, many disability advocates promote "disability pride." It is equality that is needed, respect for all, and a level playing field, not sameness. Ultimately, we will all be part of the "us," and our differences acknowledged.
I never forgot Raymond's Room. As my career progressed, it came to stand for everything that was wrong with the way we provide disability services. As this book describes, I have struggled to advocate and fight for change in lots of disability arenas since; some of my efforts have led to small changes, and some, I like to think, have had a bigger impact.
But I have considered more than once whether I have stayed in this low-paying, challenging field to somehow atone for what I did not do as a very naïve young man -
- unlock Raymond's Room.

Table of Contents

ACKNOWLEDGEMENTS..........................................................xi
PREFACE.................................................................xiii
FOREWORD By Anastasia, Bob, and Jessie Lawhead..........................xvii
INTRODUCTION.............................................................xxi
CHAPTER ONE:
One Toothbrush: Institutional Life....................................1
CHAPTER TWO:
Labeling and the Disability Industrial Complex.......................21
CHAPTER THREE:
Once Segregated, Hard to Leave.......................................51
CHAPTER FOUR:
Abusive Responses to Challenging Behavior............................71
CHAPTER FIVE:
Dangerous People:
Public Attitudes and Myths of Disabilities...........................91
CHAPTER SIX:
Competency, Commonality, and Social Glue............................107
CHAPTER SEVEN:
People Need Jobs, Not Day Programs..................................141
CHAPTER EIGHT:
People Need Homes, Not Residential Facilities.......................173
CHAPTER NINE:
Supporting Self-Determined Lives:
One Person at a Time................................................187
CONCLUSION...............................................................209
ENDNOTES AND QUOTATIONS..................................................213
ABOUT THE AUTHOR.........................................................221
INTERVIEW................................................................223
INDEX....................................................................227

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Raymond's Room: Ending the Segregation of People with Disabilities 5 out of 5 based on 0 ratings. 1 reviews.
Anonymous More than 1 year ago
People we see as "different" we segregate - it is simple human nature. Raymond's Room poignantly tells the story of how we, despite our best intentions, systematically segregate people with mental disabilities into social ghettos. They cannot join the "regular" people in our activities and so we build a "special" world for them. This book calls on us to integrate those with special needs into our work, social networks and civic organizations, for the good of all. As a parent of a child with Down Syndrome and another with Trisomy 18, this book opened my eyes to the pervasive organizational segregation we see around us and gave me a vision for something far better. I highly recommend this book to professionals and families alike. It is an easy read with lots of great stories and ideas.