Here are two excellent quotes:
It is disturbing how quickly the newly disabled are presented with a bleak picture, made to feel like a burden, and never given a chance to consider that life in a wheelchair does not have to mean the end of a valuable life. The problem in society is that it carelessly allows people to believe that it is the end, no questions asked. The “no one would blame you if you want to die” attitude says “Yeah, I don’t see the value of your life either” and people with disabilities can extinguish their lives unchallenged. We believe what we are taught, and we are taught to expect empty lives when we become disabled. I do not feel angry at Bowers for his choice, but I do feel angry at the world he lived in for making him feel like that choice was only natural.
I hope that one day there will be no more stories like this, because we will know how much we are loved and valued no matter what our physical abilities may be. That we will not have to be afraid of how others will see us once we become disabled. That we will go forward knowing that we are entitled to a valuable existence. And no one will be hastily allowed to die because no one gave him or her a chance to learn how to live again.
In recent weeks I have struggled mightily with a gut wrenching loneliness. Some of this was personal and I will no longer mention this aspect of my life. To do so could cloud larger points I am trying to make. As of today my loneliness is directly related to my disability. I have reluctantly concluded that despite three decades of demonstrating my value as a human being I will never be perceived as such. Dehumanizing and degrading experiences and disability go hand in hand. I remain stunned by what took place at William and Hobart Smith. This experience and the hundreds if not thousands of others like it have proven to be like a cancer in my soul. It just eats away at me every day. If scholars do not understand the broader ramifications of disability, if scholars dismiss the lack of wheelchair access as a problem or mistake is it reasonable to expect society at large values my existence? In a word no. This emphasizes just how alone we people with a disability are. By alone in this context I mean our existence is of little value. Bowers paid the ultimate price for this cultural bias.
Bill - as always I agree with you. What shocks me the most about this is....where was the social worker or psychologist to say - Hey! Maybe we could give him a few days to absorb all of this? Where is the conscience of all these medical workers? What is wrong with this family that they so easily let go of one of their own?
ReplyDeleteDear Bad Cripple:
ReplyDeleteYou are completely right about the negative attitudes and Ingrained disability bias that exists in society. But that should tell you how important your message is to the world.
Keep it up and never stop fighting.
Jo, Bowers supposedly told his family he would never want to use a wheelchair prior to his injury. For the bioethicists that weighed in this was more than enough to deem Bowers death ethical; a perfect example of a patient making an autonomous decision. We both know this line of thought is grossly wrong.
ReplyDeleteAlex, I wish I could have had the time to chat with you in Toronto. I assure you I will not stop fighting. It is not in my nature to give up.