Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Friday, March 12, 2010
Baby Isaiah Dies
Various news outlets are reporting that Baby Isaiah died yesterday in his parents arms. I wrote about Bay Isaiah and the larger implications of the case. Baby Isaiah death was announced by Rosanna Saccomani, lawyer for the parents who read a prepared statement. The news of Baby Isaiah death came hours before the court was expected to hear testimony from Dr. Richard Taylor, a neonatal specialist that examined the infant. Dr. Taylor told CBS News that he agreed with earlier assessments that there was no brain function. In his estimation "there have been no cases in the literature or, as far as I am aware, of a child who has had this degree of injury to the brain ever recovering to any sort of meaningful extent". I cannot dispute this nor can I speculate on what sort of life Baby Isaiah may or may not have had. What I can comment on is that the life of those with profound cognitive and physical deficits are not valued. That goes for both Canada and the United States. By extension, the lives of other people that are deemed abnormal are also somehow diminished. Those whose lives are not valued or diminished include a wide variety of people, myself included. My existence is not valued because I use a wheelchair. People remind me of this every day. Why just today I was told I was "inspiring because I shop for groceries like anyone else". Gee, thanks. Obviously the expectations for my life, the degree to which it is meaningful to use Dr. Taylor's word is severely limited. I beg to differ in spite of the fact this assessment is made by many that see me during the course of a day. Again, I have no idea if the decision made by the parents was right or wrong. I do know my heart goes out to them. However, I worry about the other babies like Isaiah that do not have parents as willing to fight for the life of their child. What happens to other children whose existence is deemed marginal, their life somehow lacking in meaning? This thought keeps me up at night for two reasons: first, selfishly I wonder if some doctor will decide I have suffered enough and allow me die thereby ending my miserable existence. Second, exactly how do we determine whose life is worth living and whose life is not. I don't think I will sleep well tonight with these thoughts rattling around my brain.
I value you, William. I know from what I live every time I leave home (and from my inability to leave it, often) that we're not valued by society. It's painful, and there's no reason for it.
ReplyDeleteFrida, Senseless is the word. I cannot begin to fathom why so much stigma is associated with disability. I have thought about this for my entire adult life and remain mystified why social change has taken place a glacial pace.
ReplyDeleteOur brains haven't even caught up with the Industrial Revolution and we're now in a Post Industrial society.
ReplyDeleteOnce, people who were not physically able to help with the harvest or hunting were thought to be unable to contribute to society, and in fact to be a burden on it.
Even though we now largely work at desks in an office or even at home, it's rare that I see a wheelchair user at work.
Becs, The ethnographic literature demonstrates that in many if not most cultures people with a disability were incorporated into society. From a historical vantage point I would argue the stigma and isolation associated with disability is a post Industrial Revolution phenomenon. It rare to see a person with a disability working because the unemployment rate is astronomical. This is a social problem first and foremost. Yikes, I sound cranky!
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ReplyDeleteBill, just today, a woman in the discount supermarket parking lot stops her car as I wheel by with my three-legged dog in tow, she rushes out of her car with two $5 bills in hand, she says " hey, your life must be so hard compared to mine..."
ReplyDeleteand I lost it. I said "F___ you, F---YOU!!!"
and she sat there and said "seriously?"
Carwile, What emerges from people's mouths sometimes is a shock. I cannot blame you for the F-- You. However, I prefer an icy stare and engagement. Force the ignorant to think about what they said and why they are so wrong. This does not always work and I have let loose with more than a few unkind replies such as yours. Ugh, such ignorance is hard to forget and hurts the self.
ReplyDeleteMy father was a paraplegic. His accident happened when he was 24. His death when he was 31, one week before he turned 32 and I 10. Never not once would he allow himself to be looked at any differently then he was before the accident. He drove a car, 57 Chevy, 3 speed on the column. He and my grand father worked up the mechanism that allowed him to drive. Something he did without a license. He took my sister and I to the local drive in every Friday night. He also, through his actions, taught me one very valuable life lesson.......life is what you make it, not what it makes of you.
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