A Conference in NYC and an Article in Newsweek
March 19, 2008 by Kristina Chew, PhD
Filed under Health
Charlie is on Spring Break this week; he’s been off from school for three days now and it’s already been clear how much he misses it, how much he needs the structure and familiar routines of school: Without these, he’s one small fish in a big ocean of time. He’ll be back in the classroom next Monday and the day before I will be speaking on a panel at the eighth annual second city Disability Studies in Education conference—yes, on topics always on my mind.
Prof. Douglas Biklen of Syracuse University will first speak about
Who Owns a Disability? The Case of Competition to Represent Autism
The panel includes Ari Ne’eman, President of The Autistic Self Advocacy Network; Lawrence Long, the Director of Advocacy of the Disabilities Network of NYC; and Alicia Broderick, an Assistant Professor of Education at Columbia University. The panel will run from 1.15-2.30pm and will also address how autism and disabilities are represented in the media via discussion of the response to the ‘Ransom Notes’ ad campaign. The conference is being held at Teachers College of Columbia University at 525 W. 120th Street between Broadway and Amsterdam Ave. in the Morningside Heights neighborhood of New York.
Mysteries and Complications: Autism is everywhere—once again. Separating fact from fear as the courts and Hollywood wade in, an article in Newsweek by Claudia Kalb (March 24th issue)—in which I am interviewed and also Ne’eman—-mentions some things we’ll be talking about on the panel. This is what I said:
At 10, [Charlie's] unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son’s condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received. Today, Charlie is doing much better, even learning to surf, but he is still “profoundly different” from other children, says Chew. “There are some things that maybe he can change and other things I hope people can come to accept.”
(I forgot to mention the cello.)
Enjoy the conference!
Right away I was offended by this statement, in Claudia Kalb’s article,
“The boy who doesn’t respond to his name and will never say “I love you.”
“Never” is a long time, especially when prognosticating. Eleanor didn’t respond to her name for a long time but does now, and every day for quite a long time now she has said, “I love you”…now in words, but before in her own way which was pretty darned obvious once we had earned it–which makes sense in the context of “love”. I love her too.
I think it bugged me because that’s the cultural stereotype that people often bring up to me. Own little world, never loving anyone, etc., etc. Struck a nerve.
I was annoyed by Kalb’s very first sentence: “You wonder what he thinks.”
Reflexively pandering to reflexive pretense, from the very first line. When most “normal” people in this society encounter someone who “fits” the crude stereotypes that follow that sentence, it rarely occurs to them at all to wonder IF he thinks, much less what. Why should it? After all, he’s clearly not one of “US.”
For the average person, an object is only human to the extent that they see themselves reflected in the other’s behavior. And our failure to honestly recognize that simple evolutionary fact about ourselves leaves us powerless to do anything meaningful about it.
But we civilized, enlightened, humanitarian citizens of the modern world dare not be caught dead admitting to such shortsighted egocentricity, however innate. That would be unfashionable.
I thought the article could have been far and away worse than it was. Perhaps I’m just a cynic, but I’ll be happy with something where the general complexities are clearer than generally presented (it certainly isn’t a full-on “parents vs. government” piece that is usually seen). And I suppose I’m not as offended by “You wonder what he thinks”, since A. it doesn’t explicitly imply that he might not think (that happens enough already) and B. it doesn’t chalk up a metaphor, which usually are dehumanizing in autistic representation. I understand why you see that distinction, but for me it’s not a big detail.
I will say that the article didn’t really move smoothly from the introduction to the main body, and I will say that I got similarly hung up, like Regan, on “The boy who doesn’t respond to his name and will never say “I love you.”, since that creates such a definite cap where there is none.
On the whole, though, I thought it was way better than mainstream in terms of representation.
Cliff
I thought the article was able to synthesize the recent debates about Hannah Poling’s case and the notion of neurodiversity well. Reading it, I was struck by how the notion of a spectrum is useful and a bit misleading, perhaps, as far as my son’s ability.
I thought the article was a good summary of the different perspectives in our crazy autism universe.
The graphic for the article has a huge shot with a long needle to the left of a child who is kind of looking over his shoulder slantwise—if the size of that shot is any kind of barometer for how much the vaccine issue has gotten the public’s attention, it’s not good.
If I looked at my son merely as one who will “never see me” because of his visual impairment, I would miss so much of his wonderful world. Never is a strong word and an emotional word — and a minimizer, too.