29 Apr 2009

Autism Culture in Salon

Via Michelle Dawson's Autism Crisis blog, I have just read a recent Salon article about the supposed "burgeoning "autism culture" movement". This is presented as an idea with which "not all parents or medical experts agree." Amazingly, Elizabeth Svoboda the article's author, totally misrepresented the work Michelle Dawson does and just invented a belief system for her. Ms Svoboda did not contact Michelle before writing about her. Michelle works as an autism researcher but is mistakenly called a "autistic-rights crusader" who "convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy." Read Michelle's post to learn the truth about her court appearances.

Ms Svoboda writes,
Like the deaf culture movement before it, the so-called autistic culture movement continues to gain traction, boasting thousands of adherents among parents, patients and healthcare professionals. And the rhetoric is often as strident as anything out of the deaf-pride movement. Some autistic people even use the pejorative term "curebie" to refer to people who hope for a cure for the condition. Organizations like Autism Network International view efforts to cure autism as similar to misguided efforts to cure homosexuality and left-handedness.

As its associated swag -- buttons and T-shirts proclaiming "I am not a puzzle, I am a person" -- suggests, the movement aims to redefine autism as something to be valued and protected, not obliterated. Proponents insist that forcing autistic people to behave like "neurotypicals," a term that borders on insulting, squelches the very qualities that make them unique.
Ooh scary, rude people, calling those who push any old untested, dangerous and painful "treatments" on little autistic children by pejorative terms and calling people whose brains function in a typical way the borderline insulting term, "neurotypical."

Would she prefer they (we) be called normal? Also, few would call those who merely hope for a cure curbies. Like others I know, I don't much like the words curbie and neurotypical and prefer to use pro-cure and non-autistic (or when referring to children, typically developing).

Is there anything wrong with autistic people proclaiming their personhood on buttons and T-shirts? Does Ms Svoboda have any idea of the long history of dehumanising language and
treatment autistic people have endured and continue to endure? There are a few examples on the Autism Demonized blog and more on my blog under the label "disablism."

Neither can I understand how Ms Svoboda, came to the conclusions she did based on the quotes given by the 3 supposed representatives of "autism as a culture" in her article.

Ari Ne’eman, president of the Autistic Self Advocacy Network is quoted as saying,
"The real ends for autistic people should be quality of life, full access in society, the kinds of things we support and are working for. Parents have been told that the way to approach these things is to support research for a cure, but our belief is that that's not the most effective paradigm.
The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are."
These are reasonable points to make. A cure is not going to help autistic children and the adults they will become. I don't see how this can be rephrased, as Ms Svoboda does as, "Jenny McCarthy can go jump off a cliff"? I think she's setting out a false alternative of cure versus culture when it's a bit more complicated than that.

Kathleen Seidel is quoted as saying,
"A person's nervous system is not fundamentally going to change -- an autistic person is going to remain autistic throughout his or her lifetime. And it can be very problematic and a source of stress for an autistic child to have to suppress certain mannerisms."
No, nothing about autism-as-a-culture there either.

Dora Raymaker
is quoted as explaining her preference to communicate via text chat,
"If we'd done this interview on the telephone you would have been lucky to get much more than disjointed, stuttering, completely non sequitur responses from me. But because you allowed me to do this interview through text-only media where I can slow down, really understand you, and bypass my difficulties with spoken language, I'm able to give you intelligent, on topic answers. Do I need a pill to make me suddenly able to have phone conversations, or do I need you to be able to find a middle ground that bypasses my disabilities?"
Oh dear, Dora actually used the "D" word! But never mind, just misrepresent her too and pretend she thinks autism is just a difference:
The key assumption that underlies much autistic culture discourse is that any autism-related limitations can be worked around and dealt with in a way that does not compromise the autistic individual's core "personhood." When such workarounds are found, Raymaker asserts, the concept of a "cure" becomes irrelevant.
From my reading of the piece, Ms Svoboda would do well to read a bit about the social model of disability. Some people have mobility-related limitations that can be worked around with the use of a wheelchair and assessible transport and services. These do not compromise the person's core "personhood."

Harold Doherty is interviewed and does his party party piece of making stuff up about those uncaring neurodiveristy types. Then near the end of the article Ms Svoboda makes the following fabulous claim, that "the autistic culture movement may come off as dogmatic at times." Oh my. When compared to pro-cure proponents like the aforementioned Jenny McCarthy and her Generation Rescue buddies, the tricksy lawyer, the ABA battlers, sure, those of us who reckon autistic people should be treated well and not cured or eliminated are really dogmatic!


Fleecy said...

Thank you for posting this. I read that article and found several things in it kind of uh... disconcerting, to put it politely. For starters, that "Jenny McCarthy can jump off a cliff" line. I do not appreciate the stuff she (and others) push but I would not suggest she "jump off a cliff." Not by a long shot. I'd like to think I've matured beyond that terrible kind of outlook... wow.

As for "neurotypical" bordering on insulting... huh?! Neuro- "neurologically" -typical. Neurologically typical. I'm not spotting the insult. Not in the word itself. I've seen it used in really snotty ways ("Aspies are so much better than those stupid social neurotypicals!") but the word itself is pretty neutral, etymologically anyway. But I prefer "non-autistic" anyway... it says what I mean.

Sharon McDaid said...

Hi Fleecy, I agree with your thoughts on the "jump off a cliff" statement. I have never heard Ari say anything nasty about anyone and can't imagine how the article's author can claim that it's a way to rephrase the clear and sensible points he did make.

There are probably forums where some autistic people say they are not disabled and others claim superiority to non-autistics. That's not too surprising a reaction in groups that face such high levels of discrimination and such low levels of understanding and acceptance. But this is beyond my knowledge so it's just a notion I have!

AnnB said...

Wow Sharon, I'm lost for words! This is just the most amazing journalistic solo run I've ever seen. It just seems like a method of social control rather than any embracing of diversity. Today autism, tomorrow left handedness? However, I am also quite inspired by the quality of blogging out there on the subject, it makes me eternally grateful for the democracy of the internet. We all need to take responsibility for information we consume. Fantastic post. Keep up the great work.

Bob King said...

Great article! And timely; I haven't posted directly to the issue of autism rights for months, and this reminded me of the need.

BTW, I like "Neurotypical" too. But I do not think that the people who stridently object to the term actually are neurotypical, in many cases.

Aspies and perhaps auties tend to have higher, classically measured intelligence than social intelligence. And we tend to come into the greatest conflict - due to predictable communications breakdowns - with people who's wetware is biased in the OTHER direction, with far higher social intelligence than classically measured intelligence.

I blog mostly about politics and ethics, and I trip over these people all the time. The don't think, in the way you or I would, they seem to navigate, using the reactions of other people in a VERY large social network.

I'm not trying to make that sound insulting. It's no worse a disability than aspergers, really. But you can see how very difficult it is for such people to navigate if their "trusted network" is compromised, by people like, say, Rush Limbaugh or Jenny McCarthy, who are entirely willing to get up on their hind legs and speak as if they were thoughtful, well informed and of good intent, when at least two of the three is a fabricated false impression.

Please note the tone of this article under critique. Clearly, the author actually read the works

It would actually be a good thing if people like that and people like me - aspie as all hell - could work out some common code. Some means of communication that we had in common, that worked to minimize our... oh wait, it's right here, under my fingers. :P

Unknown said...

Well done, Sharon!
The bottom line is that controversy boosts advertising revenue, which is why the journalists invariably opt for false dichotomies. This one being no exception.

Ari Ne'eman said...

I was amused by that fascinating rephrasing of my comments as well. There were certainly some significant difficulties with this piece - on the other hand, I'm pleased that we are at the very least seeing some further recognition of our point of view. Now, we just need to get them to report it properly. I think it's important we distinguish between working to expand and seek recognition of the culture of Autistic people and saying that autism itself is no more than a culture.

Sharon McDaid said...

@AnnB, thanks a lot. It's interesting the biases you can see when reading about things you know a bit about. I wonder how accurate their stories are on matters I no little about. I would like to believe that I can learn about the world by reading well researched and accurate stories written by professional journalists. Stuff like this makes me wonder. Is the need to create drama where none really exists, the need to entertain just too important in the quest to sell more?

@Bob King, I don't thinks I've had to please to meet you before so welcome and thanks for commenting.

My own wetware is of the NT category. I have been in an intensive behavioural program for a few years but am still not indistinguishable from my autistic peers.

I like your idea for a common mode of communication, but even our written words are often misrepresented. It seems that too many people have a vested interest in pretending we're all scary, rude and uncaring about people with more obvious skill limitations.

@Phil, oh yes! Advertising is the reason why these issues are presented this way. What a shame. It is great to see Ari, Kathleen and Dora make some great points in a widely read (AFAIK) publication though.

@Ari, congratulations on your part in the story. As ever you were clear, sensitive and well-reasoned. I have no idea how she felt it appropriate to rephrase you in such a derogatory way. I am glad the 3 of you were interviewed and agree with your aim that proper reporting is the next step.

Lisamaree said...

"The bottom line is that controversy boosts advertising revenue, which is why the journalists invariably opt for false dichotomies. This one being no exception."

So true and I wonder at even giving any such article the oxygen of publicity. And yet we can't let them away with it. Perhaps the answer is to talk about it, but not buy any of the products they advertise???

I have been referred to as a Shiny ND on one of those "autism = misery" sites by a commenter, not the blog author. I have to say I was pretty pleased with the notion. Will get a t-shirt made soon.

I should point out that I am not unsympathetic to anyone who is dealing with depression as a reaction to their child's diagnosis by blogging about it. I just don't think they should be critical of those of us who find the glass half full (of chardonnay - Yay!)


Lisamaree said...

Word Verification is - I kid you not;


Sharon McDaid said...

@Hammie, shiny ND is a new one to me. I just don't get the 'ND' label. My neurology is not all that diverse!

It's fair enough for people to get pissed off at stuff, but I hate it when their ire is directed at their child, or at autism itself instead of at the crap systems that make life more difficult than it needs to be.
I'm more of a shiraz woman myself.

Killer said...

I have a friend that had a miniature schnauser called shey