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.
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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.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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