Commentary: Illinois Housing Community A Bit Less Than Sweet?
I read this article about the new community housing options offered in Illinois, as a response to the younger disability community, and there's a certain irony in it.
For, as much of America now rejects the thought of pre-planned life and the assumptions that brought about suburbia, this vision for people with disabilities is so pre-fabricated and separated from everyone but "people who are experiencing the same things."
Although some of the amenities seem thoughtful and inventive, I wonder how possible it is to avoid an institutional vibe. Although many of us find the disability experience to be full of trade-offs that nobody told us about while we were sitting in the independent-living center, and we may occasionally feel that the ideal of prosperous, self-directed independence promoted at ILC's is just a pretty mirage dangling out of our reach, as the realities can be quite different. Even now, my own life feels like a compromise between what I always hoped for and what I can get. Sometimes I miss living in a place with a recreation budget, but I never got to make my own decisions there, and was pretty much always treated as a dangerous, unstable, rabble-rouser.
In such an instance, I could understand the appeal of a life designed to make things not so hard. But there are some things even the most amenity-rich community cannot provide. What if you want more from life than hanging out in some facility's computer lab? In some ways, people act as if disabled people are in perpetual day camp, if we are not scrambling for necessities.
. It seems regressive to stick people in some apartment and and tell them "Your neighbor is disabled, too. You should have a lot to talk about."
It reminds me of meeting my parents' friends' daughters as a kid. Those relationships generally never lasted, right?
If that's really the sort of thing someone wants, I can't go as far as to object. But I do wonder if they aren't selling themselves short.
--Erika Jahneke
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THe key to where people with disabilities live is choice. Some, if given the choice, might wish to live in an environment that offers more support or is somehow more structured. Others might choose to live as independently as is possible, in the community with the supports and means in place to enable them to accomplish this.
But, in both situations, the key is choice. And yet, many people with disabilities just don't have that choice. If you need certain supports in most states such as extensive personal care attendant services, help with cooking cleaning and other more personal issues, you end up living in an institution or, more commonly now days, a nursing home that just doesn't offer much choice in anything. You get up when they say, you eat what and when they say, you go to bed when they tell you to do so. While I've never lived this experience I've talked to people who have and this seems to be the common theme.
Even in this purgatory of disability housing described in this article, choice is limited. If I'm a resident I can't choose to take the Medicaid dollars that are paying for me to live in the facility and then go and get my own place and arrange for these services. Medicaid simply won't allow me that option. So, even though I might have a fancy address, I still don't have the option of living where I want to live.
Given improvement in terms of choice and options as to where people can live and how Medicaid dollars are spent that provide support, I might feel better about the new disability Hilton in Chicago.
Larry