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Friday, October 18, 2013

Thinking About Assisted Suicide and What is Heard

I find the debate associated with assisted suicide frustrating. Some days I think only two views exist: those opposed or those in favor of assisted suicide. I am opposed to assisted suicide. I base my opposition to assisted suicide legislation on a detailed understanding of the issues involved. In my estimation certain populations are at risk; in particular the disabled and elderly people. I do not think all the safe guards in the world are adequate. I am not impressed by the reporting required by law in Washington and Oregon. In my opinion what is reported amounts to little more than demographic information. I do not trust lawmakers. The fact is once legalized assisted suicide advocates push to expand existing law. I find advocate groups such as Compassion and Choices slick and misleading. I could go on but the point is there are solid factual reasons to be opposed to assisted suicide legislation.

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:
 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.  


tigrlily said...

The thing that burns my ass is that people who want "assisted suicide" and "euthanasia" aren't willing to put their money where their mouth is. If you want to die, off yourself. There are VERY few people who can't kill themselves, if they really wanted to die.

The problem is most of these weenies don't want to take responsibility for killing themselves. They don't want to die, they just don't want to be in the situation they're in.

I have not figured out a way to say this that doesn't either fly over people's heads, or prompt a flame war.


Julie H. Rose said...

Thank you for continuing to talk about this issue. It is a relief for me to read your thoughts about it. I agree with you on every point, and the relief comes from finding someone who has the same point of view as I do.

I don't understand why this issue is so "hot." Why do all my "liberal" friends center on it so much? Is this aging population that afraid of dying or getting ill? Is that all it is?

We live in too much of a black & white world of thought:

Those that live with chronic illness and/or disability are deemed crazy or brave. Those that commit suicide alone are judged to have been mentally ill, but those who engage in assisted suicide are brave.

It's a crazy making set of cultural beliefs.

william Peace said...

Tigrlily, There are larger cultural forces at play as you well know. But at the individual level I agree that people who seek out assisted suicide are flawed or as you put it refuse to take responsibility. We are fragile beings and ending one's life is not difficult. I have long maintained there simply is no need for assisted suicide legislation.
Julie, Our views are well out of the norm for so called liberals. Assisted suicide creates very strange political associations. I am anti organized religion yet my views on end of life issues are in line with traditional Catholic doctrine. I admire the work of Lenny Davis in disability studies but he is in favor of assisted suicide.

Middle Child said...

I never find anything to disagree with here... I know the difference that would have been for Don as he became more frail - if we hadn't had a home and could replace equipment etc - and if he had been alone - on a pension - he would have had to really fight for his autonomy - too many end up in nursing homes over the process of enabling people to have a decent quality of life - helping with pain and equipment and accessibility and employment etc..most would choose life

rh said...

Hola, Bill. Hope you are doing well.

Without taking sides on the medically hastened death debate, I would only add two thoughts to the conversation.

1. You wrote, "People choose to die because they fear losing their independence and autonomy."

I think that for some terminally ill folks whose illnesses have already robbed them of much of their independence and autonomy, their desire for PAS is simply to control the timing of their imminent death instead of just passively (and sometimes painfully) waiting for it to happen. A lot of people wanted the right (the Oregon law passed and was upheld via referendum) but very few actually go through with it - a state with excellent access to palliative care.
This was essentially the argument of Vacco v Quill. If you're terminally ill and also ventilator dependent or dialysis-dependent (for example), you can simply stop those treatments and exercise more control over the timing of your demise. However, if you are terminal but not otherwise dependent on life-prolonging technology, then you're out of luck with regard to legal options unless you live in a PAS state. Again, I'm not taking sides here (remember that Quill lost this case) - just clarifying the argument.

2. For this public debate to avoid the oversimplification that you alluded to in your first sentence, I think it would be beneficial to establish a working distinction between "disability" per se and "terminal illness" (which often includes disability). I would be interested to hear others in this forum weigh in on this.

Fortunately, when it comes to end-of-life care, the best solution remains voluntary access to affordable palliative/hospice care. The legalization or criminalization of assisted suicide will not obviate this first-line approach IMO.

rh said...
This comment has been removed by the author.
rh said...

I should have added to #2, I think it is important not to overgeneralize the lived experience of another, be it a temporarily abled person pre-judging the experience of disability or a non-terminally ill person judging the experience or motives of a dying person who expresses the wish for PAS. While I can readily see parallels between disability and terminal illness, I think there are also important differences.

Also, to Bill's response post above, assisted suicide legislation prevents folks from invalidating their life insurance policies. Tangential to the primary issue but worth noting, I think.

apulrang said...

I think the comments to Stella Young's article indicate that a big part of the problem with this issue is a confusion / conflation of "disability" and "terminal illness" ... as another commenter here noted as well. More importantly, assisted suicide advocates tend to refuse to acknowledge that the two groups are commonly conflated. They insist that the two groups are separate ... never the twain shall meet ... so we who are disabled have nothing to worry about. It should be that way, but in reality it isn't. For evidence, I would cite the many times I've been in discussion with people about assisted suicide and noticed how their arguments float freely between discussions of pain relief and terminal illness, and "loss of independence" ... who radically different concerns. As long as this confusion and sloppy thinking persists, legalizing suicide will be just too dangerous to people with disabilities to endorse.

Unknown said...

As a disabled person I can say I contemplate suicide daily. When you are disabled you are isolated. I can't get out and do things, so friends rarely call. I feel like I am constantly harassed by social services and they have cut my food stamps to the point where I have little food. I am too disabled to carry food so going to a food bank (with horrible food) and shopping are not something I can do. I make a list and send my daughter who is 13. For some reason child support was stopped, although they say they didn't send a stop order I have a copy of it. Social security hassles me and tried to throw me off disability, that was a huge fight to get reinstated and my doctors were disgusted with social security. This government of ours is so harassing I am afraid to check my mail now. I quit going to doctors because they never talk to me or have a plan to help me, they just want me to be subjected to brutal treatments which have caused me paralysis and emergency surgery in the past. I get harassed by total strangers that I am a drain in the system, lazy, stupid. Etc. I graduated from college with honors and worked very hard till I was disabled. My family is "tired" of my disability so they never call and if I ask for help they begrudgingly help complaining to me the whole time and reminding me I am a burden. My boyfriend died almost 2 years ago, so I have nobody now. I tried to meet somebody, but they seemed more interested in my disability payment than me. Being disabled, in pain, and not able to do hardly anything is a horrible life. If something doesn't change soon I will become another statistic.