Sunday, February 04, 2007

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

I was recently given the opportunity to review the unpublished galley proof of a new book scheduled for release by its publisher Training Resource Network on February 15, 2007. The book is entitled Raymond’s Room: Ending the Segregation of Adults with Disabilities. This publication was written by Dale DiLeo, a long-time colleague of mine and staunch advocate of supported employment. For those who don’t know DiLeo, he is a well-known speaker, trainer, consultant, and a publisher of books and a national newsletter called InfoLines. DiLeo is an outstanding and tireless advocate promoting the job placement and integration of adults with significant disabilities in the workforce and community.

Once Raymond’s Room arrived, I thumbed through its chapter titles slowly. I knew immediately I was embarking on a journey with much familiar terrain. Take a close look at the topics DiLeo has chosen to address:

  • Chapter One: Institutional Life
  • Chapter Two: Labeling and the Disability Industrial Complex
  • Chapter Three: Once Segregated, Hard to Leave
  • Chapter Four: Abusive Responses to Challenging Behavior
  • Chapter Five: Dangerous People: Public Attitudes and Myths of Disabilities
  • Chapter Six: Competency, Commonality, and Social Glue
  • Chapter Seven: People Need Jobs, Not Day Programs
  • Chapter Eight: People Need Homes, Not Residential Facilities
  • Chapter Nine: Supporting Self-Determined Lives: One Person at a Time
  • Chapter Ten: Conclusion

Raymond’s Room is DiLeo’s personal memoir and is based on firsthand career experiences as a direct service professional, manager, trainer, and consultant. And "Raymond" is an individual with autism served in a residential program where DiLeo once worked in the State of New Hampshire. To this day, DiLeo is haunted by a stirring memory and image of Raymond locked inside a small sterile room due to socially maladaptive behaviors. DiLeo is still anguished by his sins of omission as young fledgling professional..."I now know I should have made them unlock your room." Raymond’s Room is DiLeo’s personal testimony to unlocking the truth. And today, he demonstrates uncommon courage by opening the door to opportunity and better life for all Americans who live with significant disabilities.

Frankly, I had a very hard time putting this book down. DiLeo and I are approximately the same age and began our professional careers within a year of each other in the early 1970s. We entered our careers through different portals: DiLeo within residential and educational programs and I within a sheltered workshop and community rehabilitation program. It matters little how we entered the "Disability Industrial Complex" or DIC as DiLeo refers to it. Somehow, we have traveled remarkably similar journeys within the matrix for 30 years. And today, we find ourselves with similar experiences and clarity about what is wrong with life in America for most people with disabilities. I also believe we share common views about what needs to be done about it.

It doesn’t take DiLeo very long to get straight to his main point. There is nothing right nor American about the segregation of people with disabilities. In America, we have created a society with laws, rules, and protocols of care that isolate people with significant disabilities from the rest of us. To illustrate, 60-70% of adults with significant disabilities are unemployed at a time when the U.S. Department of Labor reports a five-year unemployment low of 4.4% for all Americans (US/DOL, November, 2006). There was a time in history when such a gap could be easily explained or rationalized. Today, we have a moral obligation and window of opportunity to change what it means to live with a disability once and for all.

As DiLeo points out, we have taken baby steps with passage of the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and findings from the federal Olmstead Court Decree. Each of these milestones validate the rights of Americans with disabilities to live their lives in integrated communities with support. Further, we have identified new strategies and methods to customize supports inside the workforce as well as in housing, education, and leisure environments to enhance the competencies and capacities of people so they can realize outcomes of self-determination and integration.

With this said, the author laments how the wheels of social change are too often impeded by stubbornly-held stereotypes, paternalistic attitudes, and apathy. DiLeo minces no words that much of this inertia comes directly from the DIC, an industry more concerned with its own growth and stability than it is about connecting the people it supports to integrated and naturally supported outcomes in their communities.

DiLeo is eloquent in his arguments and his passion for social justice is genuine. Yet Raymond’s Room is not some rant or diatribe by a burned out professional with an axe to grind. His criticism is driven by good conscience and knowledge about emerging and evidence-based practices. To be sure, DiLeo learned a valuable lesson that one’s silence in the presence of injustice is unacceptable. Imbedded within the book's chapters are core questions that beg for reasoned answers:

  • If we have already demonstrated a capacity for ending the segregation of thousands of Americans with significant disabilities via supported employment and integrated community living options, then what does this mean for everyone else?
  • Why are we so willing to accept the status quo and assume that individuals with significant disabilities placed into the workforce and community are an exception to the rule?
  • When will we stop portraying people with disabilities as objects of tragedy and pity who are in need of continuous rehabilitation, protection, and custodial care?
  • What is it going to take to extend opportunities and apply the knowledge we already hold about integration and inclusion to the benefit of all?
  • What is it going to take to end accepted practices that segregate and isolate adults with significant disabilities in America?

DiLeo argues, and rightly in my view, that we already hold much of the knowledge and skill sets we need to change our systematic segregation of people with disabilities. The key question is this--Do we have the public will?

DiLeo doesn’t minimize the size or scope of this challenge but loathes the intellectual dishonesty, arrogance, and downright refusal of the DIC to move outside of its comfort zone. The DIC is not only well-organized and holds political clout but it exerts a tight choke-hold as to how existing funding resources are used. Therefore, the "industry" is able to direct its resources and sustain energies to meet "community needs" in a manner it so chooses. And sadly, the DIC’s own self-interests often trump those of the individuals they purport to serve. In a twist of irony, we have already witnessed many of the very same arguments and self-interests in nationwide advocacy battles to close and reduce the census at public institutions offering custodial care for people with disabilities.

DiLeo uses wit and humor to drive home some of his most salient points. My personal favorite is this– "Workshops, it turns out, are like hemorrhoids. If you really try, you can shrink them. But they’re tough to go away."

Raymond’s Room will no doubt ruffle a few feathers inside the DIC. Despite his critical views about existing disability service practices, DiLeo holds optimism for the future. He cites well-researched alternatives to traditional practices that segregate people with disabilities from their communities throughout the publication. In addition, he offers numerous examples where people with significant disabilities beat the odds and achieved unexpected success contrary to common wisdom or rigid opinions of disability "experts."

DiLeo rightly points out there is no single formula to success. Every individual has unique gifts and talents to contribute. Every business enterprise has a its own priorities, goals, and workforce culture. And each community is guided by its own set of demographic characteristics, values, resources, culture, and vision. Ending the segregation of people with disabilities requires an individualized, customized approach that incorporates these facts and works to connect people to jobs and their community one person at a time. Taking shortcuts (i.e., traditional DIC approaches) only leads to disappointment, unemployment, underemployment, and long-term segregation in congregate disability service programs.

Raymond’s Room is a highly recommended reading for people with disabilities, family members, educators, case managers, vocational rehabilitation counselors, disability policy makers, residential providers, job placement specialists, employment specialists, disability service practitioners, advocates, business leaders, volunteers, and others who touch the lives of youth and adults with disabilities. This book is an inspired message of hope and a call to urgency. 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.

Raymond’s Room is available at Training Resource Network for $15.00 per copy. At this affordable price, it is well worth ordering multiple copies for staff, family, and friends. You can order your very own copy of the book at this link. Or, you can purchase Raymond's Room at Amazon.com.

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