I’m Too Sexy For…

Filed Under (Autism and Learning, Autism and The Media, Critical Disability Studies) by Estee on 06-07-2009

This month’s UTNE Reader has three superb articles on disability and design and disability and beauty. Long-time model, artist and prosthetic user (as well as designer) Aimee Mullins also writes, Prosthetic Power: Aimee Mullins redefines beauty and the body.

In this photo, Aimee is photographed with prosthetic legs which she fashioned after the hind legs of a cheetah. She runs with these legs and has a dozen pairs of differently-designed and fashionable legs, which also give her five different heights.

In the UTNE article, she discusses how she puts the legs on a table for young children to view and discuss. She asks adults to stay out of the room because “they [children] only learn to be frightened of those differences when an adult influences them to behave that way and censors that natural curiousity.” Instead of being stared at as some kind of freak, Aimee invites the children to explore. Unabashedly, they touch the legs an wiggle the toes, she explains. She says to the children “I woke up this morning and I decided I wanted to be able to jump over a house. If you could think of any animal, any superhero, any cartoon character, anything you can dream up right now, what kind of legs would you build me?” The children shouuted “Kangaroo! Frog!” and other amazing possibilities. Of this she explains, “I went from being a woman these kids would have been trained to see as disabled to somebody who had potential that their bodies didn’t have yet. Somebody who might even be super-abled. Interesting.”

As in autistic people speaking for themselves in any way or means they can, which also incites new ideas of what it means to be capable, valuable and above-all, human, Aimee raises two very important points. First, she has taken the bull-by-the-horn to invite people to explore instead of stare. The stare can be intrusive, full of, often misplaced, assumptions that the disabled person is less worthy and valuable or even capable. The stare can be overlayed with assumptions that an disfigurement is ugly.

Autistic researchers who redefine paradigms of how autistic people learn are no different than the likes of Aimee who not only redefine disability, but refuse to let non disabled or autistic people define it for them. Because Aimee’s disability is more visible, this point may be easier to absorb. Cognitive disabilities are still not understood in the same fashion.

Still, Aimee talks about becoming the architects of our identities, and this holds true for our autistic community.  As a woman who is admittedly still influenced by how I should look and behave and still tortured by it, I still have an awareness of how oppressive imposed identities have on us. She makes note how Pamela Anderson has more prosthetics in her body than she does but that “nobody [calls Pamela] disabled.”

While its true that no one calls Pamela Anderson disabled, I would argue that she is entirely disabled and entrapped in a male view of what a woman should be. We are entrapped also by what we should be as contributors to an economy, which is restricted itself in the ways people can contribute to it.  When women or any person works so hard in order to please others before themselves, they are no longer architects of their own identities, but slaves to an imposed identity.

Having visited the MIT lab when I gave a lecture there a couple of years ago now, I was a priviledged witness of astounding design for the disabled. I believe the article hits the nail on the head as it suggests that this is no longer about accepting disability or discussing potential (although it is frustrating for many of us that the question continues to swirl), but about the potential issues regarding augmentation.

In Graham Pullin’s book, Design Meets Disability, I believe we are witnessing devices and prosthetics for the disabled that are not meek and discrete, but that wears disability as fashionable as anything I’ve ever seen. And I know that MIT works with autistic people in their lab so that devices are in fact useful and empowering — not based on a model of making up for deficiency. It will be interesting, however, to see where augmentation takes us in the sense of designing humanity. Like any other kind of design, there is such potential for abuse. I would view women who augment themselves to extremes like Pamela Anderson a form of self-abuse, and I am admittedly not immune to it.

If sexiness is empowerment, I believe that Aimee is way too sexy for Pamela Anderson anyway, or for that matter, for many men equally dis-empowered by mass-media images regarding the women they are told  should be at their sides.

As a woman full of so-called flaws, can I just sneak in here that well,  I’m just too sexy for the status quo. Or at least I should, like the rest of us, keep convincing myself as such. Aimee certainly helps us all redefine beauty. And that is entirely liberating.

Adam: The Movie

Filed Under (Autism and The Media) by Estee on 04-07-2009

I interrupt the Writing About Children posts to announce this movie coming out in August named none other than ADAM — about a man with Aspergers who falls in love.  You can watch the trailer on You Tube here.

Some of you may have already seen this trailer, but I just saw it for the first time last night while sitting waiting for Cheri to come on the screen (a movie with Michelle Pfeiffer, an ageing courtesan during La Belle Epoch who falls in love with a younger man to her peril).

Anyway, of course I was alerted to its title, not realizing quite in the first dialogue that Adam is a man with Aspergers. It should give us more to talk about with regards to autism and representation in film and other media.

Autistic Writer for Huffington Post

Filed Under (Autism and The Media, Autistic Self Advocacy) by Estee on 28-05-2009

Tagged Under :

Ari Ne’eman of The Autistic Self Advocacy Network, and an autistic man himself (he can be viewed on the Positively Autistic video by CBC on the right hand margin of this blog), is now a writer for The Huffington Post.

Congratulations Ari on this and the outstanding work you and ASAN is doing.

View Ari’s new column on HuffPo here.

Poop Talk: Jenny McCarthy and Oprah Winfrey

Filed Under (Activism, Autism and The Media, Autism and Vaccines) by Estee on 19-05-2009

The National Post ran another article on Oprah’s hanging-by-a-thread reputation in brining on board Jenny McCarthy, poop-talker and vaccination activist. McCarthy, former playboy bunny, suggests that the MMR vaccine caused her son’s autism.

“Ms McCarthy announed what her publicist calls “a development relationship” with Oprah’s company, Harpo, earlier this month. Her first gig in the deal is a Give It up Before Summer blog on Oprah.com where Ms. McCarthy blogs about her daily battle to give up refined sugar…she has blogged about hot to refuse a cinnnamon bun on a first class flight and how her poop contains too much yeast…”

Yep…that’s what I want to read about…Jenny McCarthy’s poop. I certainly am tired of listening to her claim that vaccines cause autism, with no scientific evidence linking them at all after much rigorous research. I believe the danger as Emily Senger, the reporter at The National Post cited via Dr. Kumanan Wilson, is quite correct: Oprah is seriously risking her credibility and reputation. Does Oprah care to investigate the abuse and deaths caused by not vaccinating children or because of the unacceptance of autistic people as they are either by misunderstanding, ignorance or caregivers stating they will “try anything and everything to cure [their] autistic children?” For a well-rounded view of the issues facing autistic people and their families, there are many non-celebrity stories that would be far more interesting.

Remember Phil Donohue, the talkshow host from which Oprah’s show was fashioned? Remember when Phil and Oprah used to interview real people with real issues to discuss in a public forum — many of them who did not have book credits or celebrity status attached to their names, but who were simply interesting in their own rite?

Are the days of town-halls and really interesting talk shows gone? I really enjoyed watching Oprah when she did these kinds of shows that seem to have gone way way way by the wayside.

April Fools — It’s “Autism Awareness Month” Again.

Filed Under (Activism, Autism and The Media, Autism and Vaccines, Critical Disability Studies) by Estee on 03-04-2009

April Fools of the month on Larry King tonight: Jenny McCarthy, Jim Carrey, Jerry Kartzinel and JB. Handley (of Generation Rescue) — yet again in the “name of autism” or to “wage a war” on it as it were, are STILL purporting their vaccine hypothesis — which, really, is no longer deserving of being in that category, since it has been disproven over and over again. The “bulking” of vaccines or the “schedule” — all of it — are, according to science, not the cause of autism. Yet science doesn’t seem to matter in all of this. People do not matter in all of this. Not the people who matter, anyway.

Jerry Lewis was recently heralded at the Academy Awards regarding his work “for” people with disabilities — a man who used these words in a recent response to criticism of his annual Muscular Dystrophy Telethon: “If it’s pity we’ll get money. . . . Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Yes, a man who continuously spoke in derogatory terms about people with disabilities and dehumanized them stood proudly receiving his Oscar amidst the beautiful people at the awards. There was no mention on how the disability community for years has protested Mr. Lewis and his telethons. There was no reference to the pain and harm he has caused them. The fact that Lewis used the kids (they went from being “Jerry’s kids” to adults who turned up for those protests and were kicked out by Jerry) was veneered and forgotten with smiles and gowns. Celebrity trumps the hard work of science (when it works hard), dialogue, debate, justice and intellect. Celebrity fails to question more often than not as exhibited yet again by Jenny McCarthy and Jim Carrey.

I was somewhat relieved for a moment to see Carly, the fourteen-year-old non verbal autistic Toronto girl who types. She should have had more time on the the show along with other autistic individuals like her. I am always much more interested in hearing the perspectives about simply “being wired differently,” because it is in learning how people are wired differently where we can appreciate that people can take in the world and learn on many different planes. And if that can happen, people can also contribute to the world in different and more rewarding ways as well.

CNN has not yet taken the bull by the horn the way the CBC did in its show “Positively Autistic,” (see it on the side bar in this blog). CBC did not want non-autistic doctors talking or journalistic narration in order to trump what autistic people had to say about themselves because that was the point and it is too often overshadowed.

CNN ought to take its cue, at least from the perspective of that particular documentary, from the CBC and from autistic people. I have been thinking for so long now that as much as we have medical and health components dominating the news, we should have a show on how society views difference (which would include disability) and has medicalized people who are different from whatever norm has been established at any particular point in our history. What’s the purpose of information if we do not look at it through a variety of lenses? What’s the point of medical research if we do not apply any ethical standards or reflect continuously on what it means to be human?

I meandered the Autism Hub to see if anyone else has yet written anything on the torrid experience of watching these shameless celebrities sounding really idiotic, trying substantiate their claims with quacks who call themselves doctors, namely, the infamous Dr. Jerry Kartiznel who calls our children “soul-less.” Again, such programs revolving around “Autism Awareness Month” make me afraid.

But it’s a nervous kind of laughter. Autism Awareness Month simply reminds me every year that no matter what we do, no matter hard hard we work in trying to make people aware that autistic people are simply people, that IGNORANCE still SPEAKS loudly attempting to drown the real voices of autism.

While I am not autistic, I am a parent who will remain relentless in positioning myself against such ignorance.

Judging a Book By Its Cover

Filed Under (Activism, Autism and The Media, Critical Disability Studies) by Estee on 11-03-2009

When a friend alerted me to this book by Michael Allen, I Wish My Kids Had Cancer, I had to write this post. I have to say to Allen: are you kidding? Are the publishers of this book kidding? Where has all the human decency gone? If anything goes when selling a book, a remedy, a product, what does this say of us who permit it? How far does freedom go before crossing important boundaries that we just should not cross?

I can say that I’ve witnessed a few remarkably hypocritical things blowing around me the past few months that makes me question human dignity and grace, but this is ridiculous. No parent of any child, let alone special needs child should let such a book go on sale without outrage. To me, this title is no different than to suggest how horrible it would be to raise a black child in a racist world. To suggest that the child would be better off having cancer is just insane.

My mother has had cancer twice. Cancer runs in my family. I can tell you after early stage ovarian cancer last year, that the very thought of the worst (before my official diagnosis’ and surgeries which have now rendered me fine), made last year one of the most horrifying years of my life. The thought of becoming seriously ill or dying before your time when one has a child to raise is the most scary experience I’ve ever had. I’m sure it would absolutely be worse to watch my own child go through cancer.

Speak out. Speak now, or forever hold your peace. One does not compare having an autistic child to cancer. I don’t care how tough it is.

Tough it out.

Who is Blind?

Filed Under (Autism and The Media, Critical Disability Studies) by Estee on 15-02-2009

I am catching up on my movies. After just finishing the movie Blindness, I feel disturbed at its depiction of blind people as totally incompetent, they are quarantined and incarcerated, as disabled people were not that long ago. Then, on About.com, I found this protest:

National Federation of the Blind Protests the Movie Blindness
Monday October 6, 2008

The National Federation of the Blind (NFB) announced its strong objections to the new Miramax film release Blindness, promising to protest at cinemas across the nation. The film, which opened on October 3rd, is based on a novel by author José Saramago, in which the people of city suddenly go blind as a result of a certain virus. Fearing that the mysterious blindness is contagious, the government quarantines the blinded citizens in an abandoned asylum.

The NFB claims that the film will do substantial harm to the blind. Dr. Marc Maurer, President of the National Federation of the Blind, said “Blind people in this film are portrayed as incompetent, filthy, vicious, and depraved. They are unable to do even the simplest things like dressing, bathing, and finding the bathroom. The truth is that blind people regularly do all of the same things that sighted people do.”

I admit to listening carefully, perhaps sentimentally to the the last lines in the movie — the point where Danny Glover’s voice over comments at being afraid of losing the “intimacies” from being blind — the connection, the oxymoron of seeing more when blind. It’s spoken as if once sight returns, they will all put up some sort of guard yet again and cease to connect. It’s a quaint idea. The problem is, is that it is just another stereotype, just like autistic people are all “smart” and all blind people can “see deeper” into things by virtue of some sixth sense.

It is important to also note that not one actual blind person was in the movie. I guess we begin to SEE only when we recognize that all people are the same — no matter what their disability. “We are all perfect despite our imperfections,” I said in The Autism Acceptance Project video nearly three years ago now. “We are all the same despite our differences.” Yet, we are still so very blind to accepting this fact.

US Court Says Measles Vaccine Not To Blame for Causing Autism

Filed Under (Activism, Autism and The Media, Autism and Vaccines) by Estee on 13-02-2009

Last night, while going out with a girlfriend, I ran into two comments about autism. The first was the “I’m sorry” [your kid has autism] comment, to which I can now calmly reply that this person need not be sorry for Adam is the best kid in the world (and then explain nicely why I respond as such). In fact, when I see neurotypical kids nag their parents and get greedy for things, I feel I am blessed with a conversely gentle, affable, loving, amazing child who is growing and learning and changing by the day.

The second was the usual question I get “So, what do you think of Jenny McCarthy?” Well, all you need to do is go to the right side bar, watch my Autism In The Media video for an answer on that. Usually, people unfamiliar with autism and the politics surrounding it will believe Jenny and are shocked that I do not endorse her. They sort of look at me a little perplexed and conclude “well at last she’s raising awareness.”

As I’ve said before and will say again — not all awareness and advocacy is healthy awareness and advocacy. Anything that shifts public perception to lesson the value of human beings based on their disability, sways people to feel sorry for us or our children, or endangers their health, is not advancing the needs of autistic individuals or creating an Inclusive society.  It is so unfortunate that Jenny has received so much air time and so many children have died as a result of her claims that vaccines cause autism. Refreshing was the woman last night who had asked me the question about my thoughts on Jenny. She also managed (as a scientist) to understand the scope of Jenny’s damage to autistic people.

This has been going on (and there are much better bloggers on the science and politics of vaccines and autism including Kathleen Seidel, Left Brain/Right Brain, Mike Stanton…). As I sat with my girlfriend at a restaurant last night, I receive an email to watch CNN. Any time there’s something about autism, I get similar emails, but the thing is, this is old news for so many of us. Those who watch the science, instead of following Jenny-And-The-Quacks, have known this for a long period of time. 

Andrew Wakefield is busted and CNN is finally reporting (what most of us already knew), that vaccines do not cause autism. Do you think Oprah and Larry King will follow suit? Do you think that science will be of more interest than mysticism, speculation, sensationalism, and autism as Hollywood entertainment?

For more on the US Court ruling, view the article here.

There Is A Better Way

Filed Under (Activism, Autism and The Media, Critical Disability Studies, Inclusion) by Estee on 11-02-2009

When I look at this video and of course, the recent CBC Documentary Positively Autistic (click on it on the right side bar of this blog for the actual video or go to http://www.cbc.ca/national/blog/special_feature/positively_autistic/).

I am very proud of those of us who step out and take the risks we need to take in order that we achieve a better and fair education for our children and an equal treatment from others. We work hard to try and convey the message that we need better understanding and better services across the board. And we do it all the while being called “crazy” and “unreasonable,” or we are the parents who love our “little babies now,” but we just “better wait until they grow older!” attacks. I suppose any movement that seeks to positively change things while risking out-of-the-box thinking, will result in opponents. It’s easier to stay with the status quo.

Coming from the place of diversity and Inclusion for all will advance all of that. I watched this video again, and felt it needed to be repeated.

Of course, most of us didn’t find Sawyer’s insistence that we must all be heartbroken (or continue to be) that accurate. But then again, joy, sadness, struggle — aren’t these the things that life is made of? Do we not create our own happiness? As I mentioned in the post The Metamorphosis, happiness, for me, is watching Adam grow and develop, and other unseen if not brief moments that we usually do not recognize for they come fleetingly. We just have to tune in to them.

May He Rest In Peace

Filed Under (Autism and The Media) by Estee on 03-01-2009

In the dark of the night, as Adam sleeps beside me in our hotel room, I put on CNN ever so softly to catch up on what is happening in our world. Too many pina coladas and sun can make one a little soft and mushy.

He looks so peaceful, my Adam, spending sunny days on the beach here in Mexico and I know that every day we have is precious. He looks content and exhausted. As I turn my head back towards the television, the room completely black save for the glow of the screen, I read the by-lines that Jett Travolta — John Travolta’s son dies at sixteen of Kawasakis disease.  So why don´t we let them mourn and let Jett rest? Instead, I am reading on many of the autism blogs about it.  “Jett was autistic…they should have treated him. ”  All the speculation….Of course I do hope the parent´s were not negligent in any way, but none of us have all the information. So I’m putting in my two-cents.

It’s the “autism community,”  whether it’s Scientology belief that if you have something you can cure yourself (I am not educated in Scientology and do not know if this is accurate but it is what I have read on your blogs), we have become a community of pit-bulls (I wasn´t also not fond of Sarah Palin´s hockey-mom analogy). I’m not saying I endorse that philosophy  that people should cure themselves. “Treatment” often leads to very dangerous therapies and reprecussions for autistic people. When parents cannot accept their children, they often try unfounded, unproven and very desperate things.

Yet, either for the sake of “neurodiversity-awareness” or those who want to claim that autism should be annhiliated, we are all out there identifying autistics. In that very act, we are engaging in something dangerous to humanity. Usually it’s not in good ways that we identify autistic people, but rather to point out all of their “deficiencies.”  We who recognize the positive contributions autistic people make in our society identify too, but it’s at least better than suggesting that all autistic people are not good enough as they are, or recognizing their unique abilities and offerings to our world. The point is, once we don´t see difference, we’ve won. Or we can see it and just like a tree, a rock, or a river, accept that it’s just a normal part of our surroundings.

We must think then, for better or for worse, what kind of spectacle is this? Does it matter? Once you are tuned in to disability and autism, you can see autism all over the place. You can see flapping and flailing even among the non-autistic. And what´s wrong with that?  If we really believe that we all belong to the human community, then we accept autistic and all kinds of people. Jett is gone. May he rest and let the family live in peace.

I go back to Adam now to swim in the caves in Mexico. I treasure every day and thank God I have him and this moment — my wonderful, beautiful, autistic son.  We don’t treat him as anything but the gracious and loving person he is. I think the world is lucky to have him.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.