Saturday, April 01, 2006

we're here! we're weird! get used to it!

April is Autism Awareness month. Unlike cancer or diabetes which can kill, autism does not shorten the affected person's life span (mercifully). Because my beautiful and awesome little girls have this disorder and because I think they are wonderful and dazzlingly unique creatures perfectly designed by God, I have always struggled with the language around the disorder. "Cure Autsim Now!" etc. When I see my girls or their affected peers, I find myself thinking, "Cure them of what? What needs to be cured?" At times I have thought that the world needs to be cured for how negatively and dispassionately they view autism and the people who have the disorder. At any rate, I understand that rallying behind acceptance would not generate nearly the interest or funds for research that looking for a cure does so I have no beef with the use of the term, nor am I offended by it. But there are adults with the disorder who are very, very offended and I can see their point. What if being brunette was an anomaly and the world was always rallying to "cure brown-headedness." If you were a brunette, and managed to live a satisfying life as such, that would sting and probably ruffle your beautiful russet tresses. Do ya'll see where I am going with this?
I want to share this essay. It was a speech given by Estee Klar at a NAAR rally recently. I think she sums it up beautifully.

The Economy of Pity

My background is unique in discussing the economy of pity. I began my circuitous career as a curator of art, later a director of a large event, then a corporate fundraiser and marketer for two major health charities. I also summized that art made me an effective beggar of money (not many love to fund art, to my chagrin). After Adam was diagnosed with autism and NAAR came to Toronto, and coming from Jewish family entrenched in the Hebrew ideal of tzedakah (helping those in need), it seemed natural for me to raise money for the cause that was dear to my heart: autism. At the NAAR Kick-Off Luncheon, I was asked to speak about autism. I sat and waited for my turn as Corporate Chair, becoming agitated already with what I was hearing. I was listening to leaders talk about how they “lost” their child, how devastating it was for them, poems elicting a tremendous amount of pathos from the audience. In my speech I instead spoke about research to help us understand our children with autism better. I did not talk about cures – I spoke about awareness. It was my hope that others would share the same optimism. I quoted Paul Collins:

“Autists are described by others – and by themselves – as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, “Where’s that man’s arm?” But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.” -- Paul Collins, Not Even Wrong.

I was approached afterward by educators and parents, who said they thought my speech was the best. While I am a very good speaker, I considered that my words about acceptance was the source inspiration as opposed to those mothers weeping at the “loss” of their children. It didn’t take long – a meeting with Glenn Tringali, a phone call with Alycia Halladay, appealed for my continued support to sit as Chair of NAAR. I remember sitting at The Four Season’s Hotel with Mr. Tringali, saying that if I joined, my mandate would be to raise awarness – the brand that I was selling. I addressed a consideration when Dr. Buxbaum made a quote about being able to prenatally test for autism, and to what end. A snarky email later, addressed to me by Joseph Buxbaum, and no return call from NAAR agreeing to my wish, I quickly realized that NAAR’s marketing appeals are not acceptable, if in fact inflexible. This is not to say I haven’t met scientific researchers funded by NAAR who are themselves questioning the marketing and the research, and in order to protect them I will not reveal their names. Believe it or not, there are scientists out there who have come to the same conclusion that I am revealing here. Similar to the difficulty of pulling away from ABA to try other methods of teaching Adam, leaving the gods of research initially made me uneasy. Afterall, what might the research tell us? Who was I, not scientific in the least, to question the gods? Once looking carefully at the bulk of research, I realized that it will go on with or without my support. It doesn’t need me. There are people who will find the genes, who will sell the pills, who will abort the fetus. The only thing I can keep doing, we can keep doing, is to keep talking. Give speeches, make exhibitions, run media campaigns. Did you know that eighty per cent of fetus’ with Down Syndrome are aborted? Isn’t that number shocking? I think of little B running down the hall of Adam’s integrated nursery school, a huge smile on her face, living life to its fullest and wondering what is wrong with my wiring that I’ve missed out her type of joy. Having children who are “different” is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one.

NAAR recently posted a book about accepting autism on their website. While it’s an attempt, I still appeal to them to change their fundamental error – to suggest that autism requires a cure at the utter dismay and disagreement of those with autism. I’ve asked NAAR to consider giving me an opportunity to voice these concerns, to change their semantics, and to conduct research only directed by autistic persons and to keep one ultimate goal in mind – the acceptance of and quality of life for families with autism as they are. Change, if it happens at all, will be slow. Now partnered with Autism Speaks, NAAR has an annual budget in excess of $30 million, with CIBC World Markets in the US trying to raise more “miracles,” and Home Depot is doing their part donating $25 million to the cause.

I certainly can’t offer a matching grant of that amount to get NAAR to listen to me, but I am a parent who “can speak up for my child,” and do so by listening to others with autism as well. I can’t compete on the same playing field with cause-marketing thrusts to make companies appeal, with their good intentions, to customers. What I suggest companies are missing is a due-diligence. Do they know what brand of pity they’re paying for? In War Against the Weak, Edwin Black writes about the first three decades of the 20th century when American corporate philanthropy “combined with prestigious academic fraud” created the pseudeoscience of eugenics that “institutionalized race politics as national policy. The goal: create a superior, white, Nordic race and obliterate the viability of everyone else….How? By identifying so-called `defective’ family trees and subjecting them to legislated segregation and sterilization programs. The victims: poor people, brown-haired white people, African Americans, immigrants, Indians, Eastern European Jews, the infirm and really anyone classified outside the superior genetic lines drawn up by American raceologists.” We always have to ask ourselves what is the end to this means of genetic research. Must we simply accept the good with the bad in the name of progress?
War Against the Weak By Edwin Black discusses how American corporate philanthropies launched a national campaign of ethnic cleansing in the US.

It seems to me, after having made hundreds of solicitations to corporations myself over the years, that no one thinks twice about the brand of pity they disperse. Pity is one and the same and it just makes us plain good. There is little discrimination going on the world about who is soliciting for what. So long as the message is filled with a little bit of logos and a whole barrel of pathos, the cause is whitewashed under the guise of “doing good.” It is a problem with altruism, actually. This is how Nietzsche felt about so-called `benevolence’:

Is it virtuous when a cell transforms into the function of a stronger cell? It must do so. And is it wicked when the stronger one assimilates the other? It must do so likewise: it is necessary, for it has to have abundant indemnity and seeks to regenerate itself. One has therefore to distinguish the instinct of submission in benevolence, according as the stronger or the weaker feels benevolent. Gladness and covetousness are united in the stronger person, who wants to transform something to his function: gladness and desire-to-be-coveted in the weaker person, who would like to become a function. The former case is essentially pity, a pleasant excitation of the instinct of appropriation at the sight of the weak: it is to be remembered, however, that “strong” and “weak” are relative conceptions.”

Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage, serving only to marginalize them. On the other hand, where would the Stephen Hawkings of the world be without the help, the selfless behaviour, of others? Love from his caregivers was what kept him alive, and archeological digs have revealed the remains of people who evidently lived for long periods of time being crippled.

I will posit here, in this initial draft, that Autism is the one “disability” that may change the course of philanthropic history, that may be able to jolt citizens into giving with knowledge as well as with heart. Autism is neither a race nor a disability, it is a way of being. It may even be viewed as a course of human evolution, and most illustrative of all human difference. On the surface, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means, if presumed competent, if given the chance, much like Stephen Hawking. Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren’t they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?

I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.

Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – perhaps one day to find themselves confronted with violations against human rights. I don’t think they are prepared. People with influence (those in control of the media), appear shiny and credible in the eyes of fellow CEO’s. Logos – the rational appeal of statistics and numbers manipulated for Pathos is the thrust of this economy. The most “underfunded disorder,” “1:166 children affected,” mixed with a little “epidemic” lingo is enough these days to convince a CEO to give. On top of that some media profile, signage and press releases for being a “responsible corporation” -- another rational and economically sound reason to give.

Autism requires donors to do their research. It requires others to talk to people with autism as the experts of it. It requires philanthropists to fully understand the motives of charities asking for money for the sake of a cure.

"Autism is finally speaking," says Suzanne Wright. "Now the world will listen...Be loud, be brash, be emotional, be angry," added Bob Wright.

"Don't accept it," Ms. Wright continues.

Yes, Mr. And Mrs. Wright. Autism is speaking. But not through you. "

The Joy of Autism: The Economy of Pity


Blogger m. said...

i find your life heroic. i think your daughters are lovely. a voice of reason resounding in a sea of voices trying to complicate the universe with justification. nothing meets the heart more than the joy laden response you have to your daughters lives.

9:43:00 PM  

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