What is really needed is a national debate on end of life issues. While passion is fine we need to have a sober discussion about why people want to die. I think people with a disability are ideally suited to be prominent figures in this discussion. The reasons for this are glaringly obvious to me: it is commonplace for people with a disability to have their existence, our very humanity, questioned. Our lives are perceived through a non disabled lens. That is we can never measure up to normal--in this context a non disabled body. This failure empowers typical people, the vast majority in the mainstream, to wonder what our lives are like. The assessment of life with a disability is not positive. In fact about once or twice a year a total stranger will without prompting tell me they would rather be dead than paralyzed. Given the lack of respect associated with disability, when we do speak out and assert our lives are indeed worth living the reaction is not positive. Hence when I read an article in the Guardian by Stella Young, "Disability A Fate Worse than Death, I was not surprised to read multiple negative comments. See: http://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying#start-of-comments Young wrote:
As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. All the visual cues that make me "the other" are front and centre. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".
Young goes on to note that the voice of people with a disability is rarely heard. In the rare instance a person such as Young is able to publish an article in a newspaper like the Guardian the response is emotional and often nasty. The below comments are about what I would expect when a person such as Young states her opposition to assisted suicide.
Seems like Stella believe her disability gives her some authority to advocate for others to endure pain and suffering just because she herself found it character building.
Why on earth does the writer make the assumption that doctors would automatically have control over the person? Why does she assume that rational people who decide for themselves how they want to live suddenly can no longer decide for themselves how they want to die?
I think the writer has massively misinterpreted euthanasia. It's not some dr going around saying 'your life sucks. We are going to terminate you.'
This is a very naive article that skips merrily over the pain and comfort people experience or know they will at some point in the future and look to assisted dying.
Of course, open discussion on euthanasia is needed, and all voices must be heard but should we really give more weight to fear and paranoia than reasoned arguments?
I find it infuriating that disabled people opposed to euthanasia get to tell other disabled people how they must feel about their conditions, lives and deaths, but no one is allowed to tell them how to feel about them.
I do not consider my body and existence to be more or less valuable than any other human being. I have no desire to impose my beliefs on others. In opposing assisted suicide legislation I am asserting my right to live but I am far less concerned with my life than I am with the life of others--disabled others and all those others whose life is not valued. Young went on to note that:
social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives. As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives.
I would go further than Young. I think we people with a disability are feared. We are the one and only minority that can be joined via illness or accident. Our atypical bodies also symbolically represent the limits of medical science. Please do not talk to me about joint decision making strategies between physician and patients. Do not talk to me about informed consent. Do not talk to me about patient centered care. These buzz words are cultural ideals we aspire to reach. I am not suggesting we do away with these concepts. They should be valued. But my reality, my experiences when I try to access health care is radically different. Young quotes Marilyn Golden, a long time opponent of assisted suicide who perceptively observed: "we are asking the wrong questions when it comes to assisted death: We have to ask, do people with disabilities have true choice and self determination, in terms of living outside of nursing homes? In terms of housing that is truly affordable and accessible? In terms of the kind of services that really allow them to lead meaningful lives? In many cases, no."
These are the sort of questions we should be discussing. Why do people, all people, want to die? What drives a person to think death is preferable to living? Pain is not the primary variable. People choose to die because they fear losing their independence and autonomy. And here the link between end of life issues and disability is glaringly obvious to me. When I see a person with a disability I think of all the things a person can do. The same can be said for any person approaching the end of life. I think what can this person do? How can their life even with death impending be enhanced? This is not typically how others with no exposure to disability or end of life issues think. Instead we isolate the disabled and elderly--a historic pattern we have yet to break. A desire to die is a reasonable reaction to a future to spent in a nursing home. I suggest if we had community based care for elderly people life would be substantially different. Life would have value. The same can be said for those that live with a disability. Imagine if we placed value in accessible housing, transportation and lowering the unemployment rate. I bet if we did this, and I mean if we had a nationwide campaign, the lives of people with a disability would be perceived as having value. Yes, I have a dream of a utopian society. Do not blame me. I was reading Thorstein Veblen last night who was weak on policy ideas but was a great social critic.