Filed Under () by Estee on 17-12-2008
By: Estee Klar-Wolfond
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 surmised that art made me an effective beggar of money (no one loves 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 eliciting 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 over expression 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 were 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 awareness – the brand that I was selling. 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. After all, 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 would 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 fetuses 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,” Home Depot doing their part:
On hearing their story, Bernie Marcus, the Co-Founder of Home Depot and chairman of the Marcus foundation, generously donated 25 million dollars to Autism Speaks. Large contributions came from several other supporters, a clear message that people were on board. Autism Speaks would be the voice of parents who can’t speak up for their children.
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 pseudoscience 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.” In discussing autism and research for a cure, we cannot ignore this history.
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 well. There is no 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.” (118 The Gay Science)
Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage. 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. It 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 of most illustrative of human difference. On the service, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means. Organizations that seek to fund this “difficult disorder,” to cure it, 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. After all, aren’t they just good people trying to help others?
Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – soon 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 the charity.
“Autism is finally speaking,” Suzanne Wright said. “Now the world will listen.” “Be loud, be brash, be emotional, be angry,” added Bob Wright.
“Don’t accept it,” Suzanne Wright said. “We are going to need a lot of angry parents, because we are going to have that march.”
Yes, Mr. and Mrs. Wright. Autism is speaking. But not through you.