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Wednesday, December 7, 2011

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.

7 comments:

Nessie Siler said...

Dear William,
You have articulated so well what is in fact one of many blind spots regarding American Culture and PWD's. For some reason, despite the ADA disability rights are not seen as civil rights. But they are. I am thinking of starting a Facebook page using "Disability Rights are Civil Rights" for a title?
(Paul Longmore would approve, I think. :)

Nessie

william Peace said...

Nessie, Sadly I never met Paul Longmore. I did exchange a few emails with him. Anything that puts forth disability rights he would approve of. I am not a big Facebook guy. Regardless, I like your idea.

Phil Dzialo said...

My experience of disability is through my son...I have seen his invisibility, his stigmatization by his fellow human beings and mine because I choose to care for him at home. "My fellow human beings" have on occasion noted that perhaps it would have been better if he didn't make it (after 25 minutes under water 13 years ago). "My fellow human beings" avoid him because he cannot talk or walk. "My fellow human beings (relatives)" do not call or visit because they are uncomfortable. We have a long way to go, as a society, before I will have faith in my fellow human beings. Oft times, it is better to be alone with him...he is always happy. A well written post,Bill.

sbcallahan said...

perhaps it is naive to think my fellow human beings are capable of doing the right thing. I hope not Bill, it is something that has occured to me in the past though. it is naive to think that this country provides my medical care as a veteran, they do not. my care and insurance, which is quite good, is about to be gutted by these same people. the state of california and medicare provides for my care at this point. both are at risk and "socialized medicine." I think I said before and remain firm that I would not vote for assisted suicide but for different reasons than you. while working in forensic psychology many of my patients were openly discriminated against. leaving a clear message of not in our backyard. it was the same with the shelter we eventually established in calif. there are many forms of disability as you know. this will be an issue I leave in more capable hands than mine. our discussion has been a welcome exchange and I look forward to reading more from you.

Cait the Wild Guitar said...

Bill- a thoughtful & well-written column, as always. I don't think it's naïve to have faith in other people, but then, I live in Iowa City, & people here are nice to each other. We have a real sense of community here in Johnson County, & I have to tell you, as someone who's lived with Iowans for 20 years, the stereotype of the friendly, helpful Midwesterner is very true for these people.
When I meet my friend Keith, who has severe cerebral palsy & uses a power chair, people don't shun him or disrespect him. Every time I've been with him, everyone, including all the people at his favorite coffee shop, one of the many popular & accessible places in Iowa City, treats him with courtesy & respect. Capanna Coffee is one of Iowa City's most popular coffeehouses, & it's also fully accessible, including the bathrooms. Also, our public transit system is completely accessible. Every single bus has a lift, & according to Keith, they always work. He said he's never seen a broken lift.
In fact, most of Iowa City's popular shops, restaurants, & nightspots, including our nationally known independent bookstore & the two best restaurants within 300 miles, are completely accessible.
When you describe the awful things people say to you, & the most disgraceful way in which you are often treated, I am shocked to my foundations, because people here don't act that way.

Hanna said...

Hi William,
I found your blog randomly and reading here has really made me think, especially about the "death with dignity" lobby about which I've never formulated an opinion. Thank you for your insightful and provoking work here.

~ Hanna

william Peace said...

Hanna, Your comment made my day. I simply want people to think about the implications of assisted suicide. When they do, I am convinced the vast majority will oppose any legislation making it legal.