Review: Raymond's Room


Reading Dale DiLeo’s Raymond’s Room makes me think of a photo exhibition I once attended in Santiago, the capital of Chile. The exhibition portrayed residents of an asylum for people with various kinds of impairments and mental illnesses. The pictures were shocking: Sick and skinny people were packed together in buildings that were falling apart. Several of the residents were smeared in what seemed to be their own shit. I can still see their facial expressions of desperation, apathy, loneliness and fear.

I remember thinking what kind of barbarian country it was to allow such a treatment of its people. In many countries of this world, “asylums” and other institutions for people with so-called “disabilities” have been dismantled, and the care-taking of persons with severe developmental or physical impairments has been humanized. But as Dale DiLeo shows, I was only partly right. The nature of how people with “disabilities” are treated in countries with more progressive disability policies than Chile, has not changed significantly.

Through his own experiences as a social worker, and equipped with additional facts, research and theoretical perspectives, DiLeo documents how persons with extensive impairments in the US are segregated from the rest of society in group homes and sheltered workshops. A large number of people, as many as 4 million in the US alone, are not allowed to attend the same educational system as other students, and they are only allowed to visit their communities collectively under the supervision by professionals.

We rarely think of services for “disabled” as an encroachment. My guess is that most of us—including those on the Left—believe that institutions such as special schools, group homes and sheltered workshops actually are beneficial for people with developmental impairments, such as autism, Down’s Syndrome etc. At least they have somewhere to go to, haven’t they? And at least they have a chance to live with people who are similar to themselves, don’t they?

DiLeo turns this upside down, and shows that what we are talking about is a form of systematic discrimination and oppression: “[The disabled] 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.”

DiLeo aptly describes the many negative aspects of being forcefully kept away from “normal” society. Group homes, although better than large-scale institutions, tend to reinforce anti-social and destructive behavior. Sheltered workshops often provide tedious and simple job tasks, and in many industries, workers are paid what DiLeo calls sub-minimum wages of less than a dollar a day! These enclaves are often justified on the basis that they prepare its clients for real life later on, but as DiLeo shows, most end up in a permanent state of preparation for “real life,” as they are never able nor allowed to leave these institutions.

According to DiLeo, the Disability Industrial Complex (DIC) is the main force behind this segregation. The DIC is a billion dollar industry with extensive powers in defining disability policy, labeling people who it thinks should be encompassed by its services and prescribing their treatment. DiLeo himself worked inside this complex for several decades, and he shows through various examples how it has a self-interest in keeping persons with mental impairments away from “normal” society. In one of the many stories in this book we meet Dave, a guy who has a tendency of spitting and cursing a lot—especially in the “wrong” settings—and none of the professionals in the DIC who worked with him ever thought he would be accepted at an ordinary work-place. With the assistance of DiLeo, however, Dave was given the opportunity to work in a port, loading and unloading ships. To the amazement of the DIC-professionals, Dave managed to keep the job. It appeared that spitting and cursing was an accepted and normal way of acting at the port, and his co-workers took little notice of what the DIC-professionals had labeled as a deviant behavior. As DiLeo says, what the disability services do mainly exaggerates the differences of people with impairments instead of the similarities they have with everyone else.

DiLeo’s analysis of the DIC is the book’s strength and the weakness. The advantage is that it shows how people with mental impairments systematically are held away from their communities, and that the DIC has to be dismantled before we can achieve a fully inclusive society. On the other hand, DiLeo seems to believe that dismantling the DIC and replacing it with community-oriented disability services, and supported employment, will abolish the oppression of people with impairments.

This analysis, however, avoids the deep-seated prejudices against people with developmental impairments in our society, and the skepticism of employers of hiring anyone who can be seen as unproductive in the competitive capitalist economy. These obstacles will not disappear if only disability services change. Is there not something fundamentally wrong in our society, when some people will always need professionals to be included in our common activities? Should not family members, neighbors and friends be able to have more time to take care of each other, rather than leaving this to professional social workers? Should not people be allowed to worry more about their fellow citizens, than having to constantly worry about their own careers in a highly competitive society? DiLeo hardly touches upon these topics, maybe because his book primarily is written for other social workers.

I am sometimes surprised by the absence of disability issues on the Left. Maybe the reason is that so many Leftists have jobs inside the DIC, or that we are so unaware of these forms of oppression that we recognize it as something good and natural. A social ethics, anyway, cannot be based on good intentions— as the old proverb goes: the road to hell is paved with good intentions.

— Sveinung Legard


Raymond’s Room:  Ending the Segregation of People with Disabilities
By Dale DiLeo
Training Resource Network, 2007, 230 Pages