Whose Planet Is It Anyway?

Tuesday, June 10, 2008

The Unglamorous Details

Some people seem to have the idea that autistic civil rights advocacy is all glitz and no substance—that it's mainly about looking good to impress the public, such as by creating popular blogs, being interviewed in newspapers and magazines, appearing on Good Morning America, and so forth. The detractors ask: How is the neurodiversity movement helping those autistic people who are struggling with serious difficulties in their daily lives and who are not writing blogs or making media appearances?

In fact, like other civil rights efforts throughout history, most of the work is being done in the trenches, quietly and with no fanfare. When an autistic employee makes the difficult decision to be "out" in the workplace and to talk about his or her differences with co-workers and managers, this is autistic civil rights advocacy, and it is helping to make our workplaces more understanding and accommodating for people with neurological differences. When a parent actively seeks to improve a school district's policies to ensure that autistic children are included in school activities and that their teachers receive the proper training to understand their needs, this also is autistic civil rights advocacy.

The Central Pennsylvania chapter of the Autistic Self Advocacy Network, led by ASAN's vice president Scott Robertson, announced yesterday that its advocacy efforts helped to obtain the federal government's approval of a Medicaid waiver for autistic adults in Pennsylvania. This waiver, which is the first such waiver in the United States that is specific to autistic adults, will benefit autistic adults in Pennsylvania who have self-care difficulties and who are not currently receiving services. Funds will be provided to enable access to needed supports and services for housing, employment, other activities of daily living, and integration in the community.

You probably won't see anything about this Medicaid waiver on the mainstream news sites, and the recipients are not likely to be writing popular blogs or making media appearances. It's not much of a story—unless you happen to be one of the recipients, that is. Because of the advocacy efforts of the autistic civil rights movement, they will now be able to stay in their own homes and hold productive jobs in the community, rather than being warehoused in institutions or group homes. This is how the neurodiversity movement is helping to improve the lives of real people in our community—through sustained and committed efforts, most of which are made with no cameras around anywhere.

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  • So it's not exactly "glamorous" but it IS critically important! Hurray for the trail blazers! Maybe DE will be next? (yeah, right, uh-huh)

    By Blogger Niksmom, at 8:33 PM  

  • Hmm Pennsylvania! And I thought California was always first? I have a growing respect.
    Best wishes

    By Blogger Maddy, at 9:23 PM  

  • "But Scott is too high functioning. He doesn't understand my child."

    Excellent post and thank you for pointing it out.

    By Anonymous CS, at 9:49 PM  

  • Yeah, while I loved Kristina Chew's and Ari Ne'eman's contributions, it disturbed me how *some* autistics were described as non-communicative, or un-emotional. Even people who want autism gone ought to recognize how unfortunate it is that these destructive stereotypes abound.

    By Blogger geosaru, at 10:00 PM  

  • I quite agree, I am sick of the media triumphalism, as if this is all that matters.

    I don't know anything about medicaid, not my territory, maybe that is the only way things can be done.

    But I would much rather that Autism lost it's medical connotations and that services were available on the basis of social, or educational need.

    It's not like one needs a certificate from a Dr to prove ones gender or ones ethnicity in order to achieve civil rights is it?

    By Blogger laurentius rex, at 4:48 AM  

  • Larry, it's because we don't have national health insurance in the United States. The Medicaid program is for the poor and has a strict income limit. Without a waiver, providing services for autistic adults would cause them to lose their eligibility for government-provided health insurance. It's a very screwed-up system.

    By Blogger abfh, at 7:26 AM  

  • I watched the news clip and was struck by how befuddled the 2 ABC folks seemed by the whole thing. It seems like anytime anyone with any sort of disability says they're OK, and furthermore they wouldn't change things even if they could, it just baffles people. They just get a glazed look in their eyes. It was fun to watch.

    By Anonymous Jeff, at 4:55 PM  

  • Great news! Go Pennsylvania; they've partially redeemed themselves for voting for Hillary in the primaries.

    By Blogger Veralidaine, at 7:24 PM  

  • I saw the ABC GMA segment too and blogged about it after an extended period of inactivity. At best it did not even come close to doing the Neurodiversity movement justice. At worst it seriously called our sanity into question. It was sneaky but by watching several times I figured out what they're up to.

    I am serious too when I say that Autism Speaks has even taken notice to this segment on GMA. So we're finally a viable threat on their radar map....

    By Blogger MeridiusMD899, at 2:14 AM  

  • In the UK, the battles are being fought both in parliament and at a local level. There's been much central government guidance on what services should be provided for autistics which has been shamelessly ignored by local government who are largely responsible for the provision of services. Which leaves people at the sharp end like me, to lobby our MP and councils and to shame them into action by publicising the conditions on the ground.

    By Blogger Socrates, at 5:44 PM  

  • In fact, like other civil rights efforts throughout history, most of the work is being done in the trenches, quietly and with no fanfare.


    I often hear that I don't do anything of substance or offline, just because I don't sit there tallying up what I've actually done and listing it online.

    And of course when I do stuff like that I don't limit it to autistic people, because my concern isn't just for autistic people. And a lot of the things I do, I don't describe because they're private to the people involved.

    But it seems like if you don't participate in "How many people have done how much for what?" contests then people assume your actions are non-existent except for blogging and media contacts.

    My assumption in general is that most of us are quietly doing things in the background without being noticed at all. It seems somehow wrong (in both an accuracy sense and an ethical sense) to assume that just because people are on the Internet, that's all they do.

    By Anonymous Amanda, at 4:02 AM  

  • "But I would much rather that Autism lost it's medical connotations and that services were available on the basis of social, or educational need."

    I think we've both been saying this for years.

    By Blogger David N. Andrews MEd (Distinction), at 9:27 AM  

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