Whose Planet Is It Anyway?

Wednesday, April 29, 2009

Ari Ne'eman, Dora Raymaker Present Self-Advocate Views

While being interviewed for a Salon.com article, ASAN President Ari Ne'eman and Change.org blogger Dora Raymaker both indicated that more access to services and accommodations in society would greatly benefit the autistic population. Dora Raymaker gave the example of how much easier it is for her to communicate through text chat instead of telephone conversations, explaining that an instant-message conversation allows her to work around her speech disability. Ari Ne'eman explained that cure-oriented research has taken funding away from vitally needed services and that a focus on causation tends to imply that autistic people are less valuable members of society.

As discussed by Sharon on the Family Voyage blog, the article has some flaws, of which the most glaring is a completely groundless assertion that autistic rights advocates in the United States are engaged in court battles to stop treatment programs from receiving government money. No such court cases exist. To the contrary, ASAN and other pro-neurodiversity groups have lobbied vigorously to expand the range of services and therapies made available through government programs and insurance mandates, while also pointing out that the focus of such programs should be on teaching useful skills rather than suppressing harmless differences. Michelle Dawson explains on her blog that the article misrepresented her intervention in a Canadian case several years ago.

The article also would have benefited from a discussion of the social model of disability. Although the author does mention that some families believe "safeguarding a child's dignity and teaching him to navigate a neurotypical world… don't have to be mutually exclusive," the article gives the misleading impression that this is a minority view among autistic culture proponents, when in fact the non-exclusiveness of respect for autistic differences and enabling autistics to interact effectively with others is central to the neurodiversity philosophy.

Overall, though, I am glad to see that self-advocates now are being interviewed for articles about autism much more often than in previous years, rather than being left out of the discussion altogether. The media seem to be moving in the right direction.

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  • There are a lot of problems with that article... I am heartened by it seeming like a step in the right direction, though.

    By Blogger Fleecy, at 6:33 PM  

  • For clarity, Elizabeth Svoboda, who wrote the Salon article, did not interview or contact me in any way.

    My views and actions are grossly misrepresented in many ways, and commented on by others, in Ms Svoboda's article.

    I've written that "cultural phenomenon" views of autism have been harmful to autistics. I'm not an "autistic culture proponent" (setting aside my views, I would not know how) and I suspect by ASAN's standards I don't qualify as a "self-advocate." For example, I had no idea there was a "neurodiversity philosophy."

    By Blogger Michelle Dawson, at 8:25 PM  

  • Also for clarity, I did not intend to imply that one must be a supporter of neurodiversity, autistic culture, or ASAN in order to "qualify as a self-advocate." I was using the term self-advocate in the same way in which the Wikipedia article defines it.

    By Blogger abfh, at 9:48 PM  

  • Regarding the term "self-advocate", I hope this term can be used to simply refer to an autistic person who in some way asserts his/her basic human rights.

    I am having difficulty writing lately in part because it seems like there is almost no terminology I can use for anything that won't either be (a) taken as adherence to some over-arching ideology, or (b) likely to spark a big argument over...terminology.

    In any case, the Salon article seemed very much like it was oversimplifying a lot of things and trying to act like there are two "sides" when it comes to all things autism-related. Popular media seems to like to form polemics as if there were no other way to write about a subject. I wish they'd learn otherwise. :/

    By Blogger Anne Corwin, at 10:43 PM  

  • I have to confess I've not read the article yet because I can't spare the brain space for coping with misquotes, but it is NOT TRUE that speech therapy was not useful to me. On the contrary, I found speech therapy EXTREMELY useful to me, and in fact some things I learned from my SLP literally changed my life. What the author and I talked about was the fact that *I* wanted the speech therapy, and *I* created the goals, and *I* worked toward them. In other words, my therapy was 100% self-determined. I will be very unhappy if that point was lost to misquoting.

    By Anonymous Anonymous, at 12:23 AM  

  • I can't imagine why you feel that by "ASAN standards" you don't qualify as a self-advocate. ASAN doesn't reserve to ourselves the right to define that term and, if we did, I can't imagine we would come up with a definition of it that wouldn't include you and your work, Michelle.

    By Blogger Ari Ne'eman, at 2:42 AM  

  • Dora, I'm afraid that point got mangled beyond recognition. I've edited my post accordingly.

    By Blogger abfh, at 7:53 AM  

  • In response to Mr Ne'emen, I was referring to what has happened when autistics have not conformed to "self-advocacy" as ASAN sees it (one example here). Because ASAN has "autistic self-advocacy" in its name, and is now a very powerful and influential organization, this creates confusion as to what does or does not qualify as "autistic self-advocacy" according to ASAN.

    By Blogger Michelle Dawson, at 8:10 AM  

  • Here is an irony, I suppose you could call me a self advocate, but I came into advocacy to advocate for others even in the paralegal meaning of that.

    I and I know many others find it easier to speak on behalf of others, and when I say "on behalf of" I don't mean the nebulous I mean to engage with people who have a need of representation and do it one to one against the authorities. I have always managed to do that better for other people than I ever have for myself.

    When my favourite phrase to the Upharsinati, is to autofellate if they have either the agility or the endowment you can see that I am in need of a few civilising influences myself.

    By Blogger Larry Arnold PhD FRSA, at 4:25 PM  

  • "When my favourite phrase to the Upharsinati, is to autofellate if they have either the agility or the endowment you can see that I am in need of a few civilising influences myself."

    Larry, man!

    You need to find a hro that isn't Ron Jeremy ;)

    How you doing?

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 6:23 PM  

  • This comment has been removed by a blog administrator.

    By Blogger John Best, at 11:21 PM  

  • Because it's all Autistic Spectrum, Best!!

    By Anonymous Anonymous, at 6:09 AM  

  • This comment has been removed by a blog administrator.

    By Blogger John Best, at 1:44 PM  

  • @ John Best (to the tune of "It's My Party")

    It's my blog, and I'll delete your pointless trolling crap if I want to...

    By Blogger abfh, at 2:17 PM  

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