Saturday, June 24, 2006

Everybody's rights...

I have been more & more appalled lately by the reports of abuse & murder of children with all sorts of disabilities. Kristina Chew in her Autism Vox site recently reported the response by disability advocates here: & it was a welcome response. I recently confronted this issue of how we think about people with disabilites with the minister of our church, who was participating in a Muscular Dystrophy fundraiser by being "locked-up" & asking his friends & congregation members for "bail". This is the email I sent to him:

Hi George,
Your mentioning of your fund-raising efforts in church yesterday reminded me that I had wanted to contact you about this (things have been so busy I'm having to make notes to myself to remember things :). I wanted you to know that I oppose the Muscular Dystrophy Association's tactics for fund-raising on moral grounds, so that is why I have not supported your efforts. I know that you are supporting them for very good reasons, but most people are not aware of the moral implications of these sorts of fund raising campaigns, so I thought i would send you some info.
My main objection is that these campaigns objectify disabled people as objects of pity. Our society tends to see this as an acceptable exchange for the money that is given to the cause, & the good works that it will do, but in fact it's hurting those it is trying to help much more than it helps. For one thing, it perpetuates an unacceptable way of thinking about any human being, & in a society that resists thinking deeply about anything, this is not good. What we need to do is challenge the assumptions society makes about people. Certainly we would do this if it were racially-based, but the perception of disabled people as objects of pity is so pervasive as to be nearly unquestioned. A good example of this is the recent publicity of the murder of an autistic child, Katherine McCarron, by her mother. This is becoming more & more widely seen as a mercy killing, in spite of Katherine's grandfather publicly speaking out on the contrary & describing what a vibrant & lovely child she was.
Of course I feel deeply about these issues as the parent of a disabled child, but I was also fortunate to have belonged to a group that brought together disabled & able-bodied (as we used to say:) teens for social occasions back in the 70's. I met many young people with MD & learned first-hand that they were not only persons of worth & dignity, but certainly were not people to be pitied (some of the guys were pretty cute...). This experience made a lasting impression on me & has made me want to advocate for a positive view of differently-abled people whenever I can.
As a mother of a child on the spectrum I began blogging in January & joined an amazing community of people at various places in their journeys with autism, with some amazing advocates. One, Estee Klar in Toronto, has written an interesting examination of the "Economics of Pity" & here's the link:
I hope you will accept my comments in the spirit of friendship in which they are offered. You are a kind & thoughtful person & I really wanted to give you another perspective on the fund raising.
See you soon -Lisa

I sent this email on June 12th & have yet to receive a response, but I hope that he did understand my concerns & took them in the spirit intended. It is very hard to try to do good & be told that you may actually be doing ill...

B & I had a heart-wrenching discussion sometime last year about disability. He was trying very hard to understand where he fit in the world, with his differences & difficulties, & was wrestling particularly with how he was/is perceived by others. At some point, we were talking about how his somewhat invisible disabilities were just as real as if he were in a wheelchair or were blind, even though neurological differences are not generally recognised that way. B told me that he thought it might be easier to be in a wheelchair, which led us to a comparison of his life on wheels vs his life on the spectrum. It was illuminating for me to see how hard he was trying to get a grip on what exactly his differences were & how they affected him & other people. We ended the conversation, as I try always to do, with an affirmation of how valuable he is no matter what his differences, how empty life would be for us without him, & how much I love him. It also, as usual, ended with tears...

Why does our society embrace the "sound-bite" mentality/sensibility to the exclusion of real understanding? Why does humanity seem to need to put people in neat categories that serve no-one? Why is is so hard for most of the world to understand why my kid's life is not a tragedy but a gift to everyone who knows him? Deep acceptance & understanding of others is turning out to be one of the most difficult things for people to learn... but they are essential for our continued existence. I would not want to live in a world without neurodiversity, or any diversity.


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