Sunday, July 3, 2011

On Simulated Communities for People with Disabilities: From Agency Businesses to Gated Disability Neighborhoods

Ah, vacation. I am sitting on a porch in a house in the Great Smoky Mountains, altitude about 4,000 feet, in just about near-perfect weather. My family and friends have enjoyed great food, good company, music, hiking and other pleasures. It makes me consider the nature and value of community. In the disability field, we talk about the community as if it were a single place where one lives, including its various surrounding people, businesses and social groups. But actually, there are multiple communities we all participate in and which sometimes move with us. 

Also, we are constantly evolving, building and deconstructing communities, depending on interests, needs, and locations. When I travel to a new place, like now, a few of my social communities actually come with me, such as friends, family, and my virtual networks. And I also might enter into new communities I discover here, as I bike, hike or play music. I view most of these communities as a significant part of my life. They enable me to interact with people I care about, work colleagues, advocacy groups whose causes I am involved in, or interest groups I enjoy.

One of the characteristics of our disability service system has been to congregate people based on their disability label or perceived need for services, in effect "creating community" for them. This is thought to be advantageous for cost efficiency, as well as in the interests of people with disabilities who are assumed to prefer to be with "their own kind." But congregation has had several disastrous unintended consequences on the quality of their lives, particularly in terms of impoverishment of their participation in diverse communities. Most importantly, it has resulted in a segregated life experience for people with disabilities, as most still attend special classrooms or schools, live in separate housing - ranging from institutions/nursing homes to groups homes and work, or are "kept active" in separate facilities such workshops or therapy centers. Segregation in turn has had other effects that reduce the quality of life.

In this post, rather than detailing the horrific impact of segregation has meant for people, I want to focus on the misguided efforts some are now making to "correct" segregation. In my travels as a disability consultant, I have observed various initiatives that, in effect, try to simulate integrated communities for people with disabilities. This has included:
  • spending millions of dollars to clean up and rehabilitate segregated facilities such as institutions, nursing homes, or large group homes to be more safe and "home-like."
  • attempting to create agency-run businesses within non-profit disability agencies, to primarily employ people with disabilities, but also including non-disabled workers as well.
  • "reverse-integrating" sheltered workshops by hiring some individuals without disabilities to work alongside the workers with disabilities, to make them more "business-like."
  • building new enclosed neighborhoods, sometimes as gated developments, that would be "community housing" for individuals with disabilities.

All of these attempts, and many more, are well-intentioned efforts to either to reduce segregation or help correct existing bad conditions in segregated settings. But they are artificial solutions that are deeply flawed and only deflect from the real needs people have. The argument often is that these steps are closer to real community. Or that they are "better than" what exists now. But this misses the point. It's like trying to frantically repair a ship doomed to sink. Why not get everyone off the ship and back to where they should be? We should just admit that the very idea of this particular ship was the actual problem.

Creating community is of course possible, but only when people come together for a real reason of interest, location, or shared value. Engineered communities (especially when membership revolves around on a life characteristic such as a disability condition or label) are not nearly as powerful or real as those that arise from natural sources (unless we are talking about advocacy). Artificially simulating community for people with disabilities, especially without their input and informed choice, produces outcomes that fall far short. After a while, conditions, failures, and faults become publicly exposed. We then try to fix the simulated community by making it nicer or better. That just tragically postpones the real and desperately needed solution. 

People with disabilities belong, first of all, in their real and already existing communities - all of them that apply - the "common unity" of location, work, passions, skills, families, religion, and so on. Where we need to focus our resources is to advocate, adjust, and/or support each community when it falls short in welcoming anyone, or preventing full participation, because of their differences.

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Ending Disability Segregation