No Faith in My Fellow Human Beings

Last week I had a highly rewarding exchange of emails with a woman who is detailing her end of life experience at thedrsays.org. She is experiencing congestive heart failure and wants to die with dignity and in peace. We started our exchange as I left a cranky comment about her positive response to the Dr Oz I railed against on assisted suicide. Despite our different views we showed each other a great deal of respect that is all too often lacking when end of life issues are discussed. She is facing some very difficult decisions in the very near future. I wish her and her family well. I also urge you to read her work. It is important in large part because she is a living example that modern medical care and medical technology have created impossible ethical conundrums. I do not envy the decisions she and her family will be making. Thankfully it seems she has an excellent rapport with her physician and support of a loving family. As a veteran I am pleased to know she has received appropriate supports in terms of health insurance.

There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don’t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."

In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.

In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.