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The Nth Degree catalog company offers lots of message t-shirts, posters, clothing and more.
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Independent living centers don't take people with MCS seriously



Disability community? What disability community?

By Nicolas Steenhout

I have been involved in the U.S. disability community for about five years. Some would say I'm a bit of a baby at it all. I'd have to agree with them.

I'd also have to say being new to the movement affords me the opportunity to offer a fresh look.

People laugh when I say that folks with disabilities need disability awareness training. But we lack sufficient awareness of other disabilities.

When I started, I worked with some wonderful people in the Chicago area. Now I'm working in Georgia. One of the things I do in my work is present disability awareness programs -- to schools, legislators, businesses, social service organizations, civic groups. In recent months though, I've become hesitant to talk about the "disability community." I'm coming to think that there might not be such a community.

Dan Wilkins of The Nth Degree has many great "message" t-shirts. One of them says, "A community that excludes even one of its members is no community at all." While all Centers for Independent Living claim to be cross-disability, too often I see problems with the application of that concept. Dan also offers a t-shirt that says "Your attitude just might be my biggest barrier." This statement is true and symptomatic of the problem. I think part of the problem is that we lack sufficient awareness of other disabilities.

People laugh when I say that folks with disabilities need disability awareness training. But we all have to learn. We cannot know everything there is to know about all flavors of disabilities. We have a duty to be willing to learn and to keep an open mind. Just this morning I used an expression that wasn't appropriate. I referred to something or other as being "idiotic." I hadn't thought it through before, but now that it was brought to my attention, I shan't use it again.

At some CILs, staff members aren't able to get the accommodations they need to do their job properly. I've heard people in the independent living movement make light of the needs of folks with multiple chemical sensitivities, dismissing it as "all in their heads." We still use expressions such as "it's crazy," or "she must be off her meds today." We go to actions and some people smoke, apparently not really caring one bit about the person next to them who might have respiratory issues. I had to get very insistent at a National Council on Independent Living conference not that long ago for people to not use flash photography -- this after several requests from NCIL staff to avoid using flash photography. The list could go on and on.

We have not, as a group, abandoned the suspicion of people who may not be "really" disabled, who may be "slacking" or "faking" or encroaching on "our" movement and "our" successes, writes Cal Montgomery. We also have developed a fixed idea of what "accessible" means. Read article.

Perhaps part of the problem is that we too easily buy into the ranking of disabilities that society seems to impose on us. Cognitive disabilities are "worse" than physical disabilities; having cerebral palsy is "worse" than having a spinal cord injury; having quadriplegia is "worse" than having paraplegia; using a cane or a crutch is better than using a wheelchair, and so on.

Then there are people within the so-called disability community who refuse to deal with or include people without disabilities. They may have valid reasons for that, but to not even say hello to someone because they don't appear to have a disability is problematic. Besides, how do we know this person doesn't have a disability? And do we really want to alienate our allies without disabilities? They are so few and far between, it appears to me a bad idea to treat them like society tends to treat us.

I'm not saying that people without disabilities should lead us into battle. Yet I think you'll agree with me that not all people without disabilities are ignorant bullies trying to take over for us. We have to find a balance. I know some folks without disabilities who "get it" much better than some CIL directors with disabilities. I can also safely say that some of those folks who do "get it" are getting thoroughly fed up at being ostracized just because they don't have a disability.

The feeling we seem to be projecting is, "They don't have a disability, they can't possibly get it. And since most folks without disabilities treat us so nastily, we'll be nasty back -- to everyone without a disability." This is a dangerous throw-out-the-baby-with-the-bath-water attitude. We must look at people for who and what they are, for what they say, and what they do. The disability factor, while extremely important, should not be the only criterion.

How can we in good conscience ask the world at large to accommodate our disabilities yet be so unwilling to make accommodations for others? This is entirely too close to hypocrisy in my book. Perhaps we lack knowledge -- but once we've been made aware of an issue we have no excuse.

We have so many issues facing us. We have life-and-death battles to fight. We are one of the largest -- some say the largest -- minority group in the nation. There is power in numbers -- yet, fractioned as we are, we'll get nowhere.

There is no unity in our community yet. There are moves here and there toward a greater cohesion of our energies, and this is good -- but until we are willing to admit that we don't understand the needs of our brothers and sisters with disabilities, and work to change it, we can't gather in the way we need to. Until we are willing to learn, and heed what others are asking, we can't join in battle effectively. Until these things happen, we are doomed to exclude, consciously or not, valuable people who are part of our true community, whether we acknowledge this or not, whether we live up to our stated ideal or not.

And as long as we exclude even one person from our community, we have, as the t-shirt says, "no community at all."

Nicolas Steenhout is the director of LIFE, an independent living center in southeast Georgia.

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