Raymond's Room, by Dale Dileo

When activists in the 1960s exposed the horrific conditions of Willowbrook, a New York institution for people with disabilities, progress began to be made on the reform of such conditions.  As he describes in his book Raymond's Room: Ending the Segregation of People with Disabilities, when Dale Dileo started working with people with disabilities in the mid-1970s, he discovered that in spite of a greater awareness by the public, high-profile politicians calling for change, and the publication of books and broadcasts of television shows about conditions in institutions, the conditions still were poor at best, and, in some cases, horrifying.  Dileo gradually came to take the position of Gunnar Dybwad, who wrote that "Four decades of work to improve the living condition of children with disabilities has taught us one major lesson--there is no such thing as a good institution."

While still a college student, Dileo got a first-hand glimpse of one small way institutions dehumanize people with disabilities.  At the residential school for children with autism he was shown that, among the many indignities, one staff member brushed all the residents' teeth--with the same toothbrush!  Then he met Raymond, who, on a nightly basis was locked in a small room which was stifling in the summer, freezing in the winter, and that reeked, due to the use of a portable toilet in the room.  The staff would lock the door from the outside, leaving him there all night.  As a young staff member, Dileo was shocked, but never did anything to change this policy.  As his views changed over the years, he came to reject the whole philosophy of institutionalization, and worked to get the Raymonds of the world out of institutions altogether.

People with disabilities have long been isolated and segregated, primarily by institutionalization, which almost inevitably leads to horrible conditions, as well as, at the very least, "needlessly limiting the quality of life for the residents that live there."  Some of the problem Dileo attributes to what he calls the disability industrial complex (DIC).  Just as President Eisenhower described the military industrial complex, Dileo argues that the DIC is "a mega-system whose primary goal is to perpetuate itself."  The DIC is "vast and complicated, often self-serving. . . . It is a huge industry, aided by government-sponsored grants and often costly technology."  Like any bureaucracy, the DIC has a tendency to centralize and categorize.  It has a preference for segregated institutions, labeling people and placing people with the same label together.  This categorization and segregation hinders social development and the acquisition of skills needed to be a part of society as a whole.

Dileo specifically addresses sheltered workshops as an egregious example of the shortcomings of the DIC.  In these workshops, participants perform simple, sometimes completely pointless tasks, for a very low wage, pennies a week in some cases.  The employer will contract with an agency of the DIC, who will provide supervision and training for the workers who have disabilities.  There are many problems with this system.  The workers themselves get nothing close to minimum wage, but the labor department considers this to be OK.  Rarely do the workers learn skills that can be applied to a job in the open market.  Even though they may be working in a workplace that employs non-disabled people, they often have little interaction with other employees.  Finally, the job they hold is not their job; it's a job to be filled by someone--anyone--the DIC agency provides.  Thus, the worker does not build a sense of job ownership and accountability.

Dileo provides several examples of individuals with disabilities with whom he has worked who work in an open-market job alongside people who do not have disabilities.  The key is to look at the individual with disabilities as someone with unique skills.  Our tendency is to place the disability front and center.  Instead we should look at what someone can do, and find a place where his skills can be useful, where he can be productive.  Sheltered workshops, favored by the DIC, tend to perpetuate segregation and do not typically lead to mainstream employment.

Another DIC favorite is the group home.  While in most cases a step forward from the large institution, group homes tend to be much less like homes than programs.  Residents in group homes have little self-determination or control over the way they live.  Meals, group outings, schedule, even the setting on the thermostat, are determined by staff, limit choice and independence of the residents.  As much as possible, people with disabilities should be able to work toward self-determination, as we all do, by finding independent living and mainstream employment as much as possible.

The central theme that I picked up on in Raymond's Room is the necessity of community.  Dileo did not address this explicitly, but it was implied in every proposal he made.  The success stories he relates frequently include a coworker or neighbor or friend who comes alongside someone with a disability to encourage her or train her or simply give some advice or a kind word.  When someone with a disability is an active, present part of a community, his neighbors and coworkers will be more likely to offer assistance.  By contrast, when someone with a disability only gets out in the community as part of a large group on an outing, there is no opportunity there for relationships and community to develop with those who are not disabled.

Lest his critics jump on Dileo for wanting to push people with disabilities out the doors of institutions, I think Dileo would argue that he does not want them entering society with no safety net.  Dileo wants for his friends and clients and neighbors with disabilities what we all want: a community in which I am valued, to which I make a meaningful contribution, and in which I am sustained by and sustain others with bonds of friendship and community.  That is the greatest challenge of Raymond's Room: many of us tend to remain isolated from community.  We pay a price for that, but not as high as price as someone with a disability who is living on his own.  Is there a disabled neighbor or co-worker or fellow church member who could use my encouragement, guidance, or assistance?  Unless I am will to play a part in the life of someone with a disability (as Dileo certainly has), it would be disingenuous of me to embrace and promote Dileo's thesis.  I am convinced he is right, that the segregation of individuals with disabilities in institutions, group homes, and sheltered workshops must end, but it cannot without a community that will embrace those individuals.

You can follow Dileo's activities and read current comments on his blog.