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Tuesday, September 1, 2009

Montana, Suicide and Disability

Does your average person really believe death is preferable to life with a disability? Based on my experience, the answer to this question is yes. Many people would indeed choose death over disability. How do I know this? Strangers have felt free to express this view to me with a stunning regularity. The reasons people prefer death over disability is twofold: first, most people know nothing about disability and are woefully ignorant. Aside from what they see and hear in the media, portraits that are inherently negative and demeaning, most people have no clue the main obstacles people with a disability encounter have nothing to do with a given disability. In spite of more than two decades of legislation geared to empowering people with a disability social obstacles remain overwhelming. Stigma, poverty and disability often are closely associated with one another. Second, most people fear disability. While I would never choose to be paralyzed, my paralysis is the least of my problems--a fact ignored and replaced by trite ideas such as victimhood, bravery, stoicism, and the idea of being a burden upon others. These false assumptions are far too common and I remain shocked so many seem to rely on such well worn and dated beliefs. Disability is no big deal and most people, ordinary people such as myself, are resourceful, willing and able to adapt. Thus I see my wheelchair, the ever present symbol of disability as a simple human adaptation: something we humans have been doing in various forms for millions of years.

If you accept the premise that more people prefer death to a life with disability then Montana is not a place to live. Here I refer to anyone who has a disability or lacks human dignity. The New York Times, Wall Street Journal and other national news outlets are reporting about the Bill Baxter case. For those unfamiliar with Baxter he died of cancer and fought not to live but die with the help of his doctor. Montana's highest court will decide this week if Mr. Baxter's claim a doctor's refusal to help him die violated his rights under the Montana's State Constitution. This would be an interesting legal question if lives were not at stake. If Baxter's position is upheld Montana would become the first state to declare an assisted death to be a constitutional right. Montana's constitution holds that "the dignity of the human being is inviolable". I can only assume not all humans are perceived in the same light. Among those that come to mind are those with a chronic illness, the elderly and people with a disability. I suppose the court like the rest of society sees some people as not fully human and thereby lack dignity. Much of course depends upon on what defines us as human and dignified. I consider myself to be fully human. I would also like to believe I have a certain amount of dignity. Much to my chagrin, many strangers that see me go by do not consider me fully human and certainly not dignified. A few have told me directly "I would rather be dead than in a wheelchair". This statement is in reality a belief: the lives of some people, my crippled ass in this case, is not worth living. This is dangerous thinking for those such as myself and others who are being judged. These sort of judgments slip into our news media and sacred institutions. Hospitals, courts, government institutions are all made up humans who are as flawed as me. Unlike others however I see nothing but possibilities and life when I see people whose life appears difficult from afar. What I think about is why is that life hard, what difficulties do they face and more importantly how do they adapt to them. At no point do I consider them less human and dignified.

The problem of course is how do we define humanity and dignity. I know for a fact that many think my life lacks dignity simply because I use a wheelchair. I try to educate all those I encounter about disability issues but I cannot change the minds of all those I meet. Thus like others who are paralyzed, elderly, or chronically ill I fear large institutions. I do not fear further disability or illness or even pain itself. I fear strangers, smart men and women who populate institutions that do not perceive me as fully human and dignified. What do we do with those that lack such important traits? In Montana we council them to die, to end their suffering. This line of logic is dangerous and has led to movements such as Eugenics. We have a new version of Eugenics today in Montana, Washington and Oregon in the form of assisted suicide. We have people like Kathryn L. Tucker, co-counsel for Mr. Baxter's estate and director of legal affairs for Compassion and Choices (a radical group that advocates for assisted suicide), that thinks in death they are "empowering patients and giving them the right to decide when they have suffered enough". Using this line of logic my life expectancy would be nil. I may not think I am "suffering" but there are a plethora of people that think differently. What worries me even further is what happens when I am older. Will some well meaning doctor decide that after 40 years of paralysis have I "suffered enough". Will my options for "care" be the same as another old man that walks in the door? The answer is not a chance. Like it or not such judgments take place daily. On the positive side, I am accustom to asserting my civil rights, a penchant that may not make me popular but may continue to save my life. Yet I wonder how much sway my own words would have in states like Montana, Oregon and Washington.


Laura(southernxyl) said...

A few have told me directly "I would rather be dead than in a wheelchair".

I am utterly stunned sometimes by what people will let pass their lips.

Also, not so sure that they know what they're saying. I have read, and had confirmed to me by an ER nurse, that it's not uncommon for old folks with living wills and DNRs to show up at the emergency room telling their doctors, "I want everything! Do everything for me!"

And also part II - when Christopher Reeve or his self-appointed spokespeople were griping about the pro-lifers who were not wanting to do embryonic stem cell research, I thought at the time that the day might come when pro-lifers would be the best friends he had. It's not politics that make strange bedfellows sometimes, it's harsh reality.

william Peace said...

Laura, I get the "I'd rather be dead" comment about 5 or 6 times year. This always leaves me speechless. How does one reply to such a thoughtless comment? I worry though that these people are among the few willing or dumb enough to express what they are thinking.
I comment on assisted suicide from time to time. However I cannot become allies with right to lifers and right wingers that embrace the right to life debate. As for Reeve, I have made my feelings clear elsewhere. He was a self centered, egotistical and wealthy man that did not give a damn about anyone but himself. His quest for a cure to the exclusion of all other issues set back disability a decade or more. The fact we lived close to one another, less than 3 miles, is ironic.

Laura(southernxyl) said...


Well, to me, it's all of a piece: if human life is of value, then it's of value from beginning to end. It's not like we're puppies or kittens before we're born. I have an internet friend who has a baby with Down syndrome. She reported on her blog that a couple who were friends of her husband's came to visit when he was very small. The wife is an OBGYN and she held that sweet baby on her lap and asked three times if they had not done testing b/c women don't have to have babies like that and in her practice they don't - basically saying that he should have been aborted, even as she was holding and cuddling him. My friend in telling that woman to shut up after the third time was a lot nicer than I would have been.

Claire said...

jesus, what perverse things to say to people! But then again, my own mom told me to put my daughter in an institution and "save" myself and my marriage...and she only has two grandchildren...both my kids. sigh.

william Peace said...

Laura and Claire, People do indeed say the most amazingly thoughtless things. I for one try to really think before I speak and yet once in a while am quite good at sticking my foot in my mouth. I wonder if others try to self edit as much.

Laura(southernxyl) said...

Claire, has your mother come around?

My MIL told me, when I was pregnant, not to ask her to babysit; she'd done the grandmother thing and was over it. After my daughter came along, I think my MIL was shocked to discover how much she loved her, and in fact invited her over to spend the night sometimes.

William, I have put my foot in it before, usually saying something that came out totally different from what I meant to say. Because of that I'd give a complete stranger the benefit of the doubt for a single utterance, esp. if what he/she said was ambiguous anyway. "I'd rather be dead than paralyzed" could be someone thinking out loud and not having thought it all through, although I'm sure you found it jarring as hell and they certainly shouldn't have verbalized it. To say three times that a baby need not have been born doesn't really allow for error, of course.

Claire said...

Hi Laura...not really. She loves my girl, but cannot, in her own mind, imagine what I am doing and so, believes I am sacrificing too much. She always said she would never let her kids "change her life". Too bad for her. Mind you, she is an old woman and "retarded" kids don't fit well into her world view.

William, I wonder if the legal eagles in Montana will be able to work with a strict definition of "suicide" to stop this nonsense. Technically, suicide is a solitary act...Assisted suicide is an oxymoron. The minute you have to involve someone else, it is by strict definition "murder". So, if human dignity is inviolable, then someone else's "human dignity" is violated by being forced to perpetrate a murder. Making suicide a "right" is fine and may force insurance companies to pay up death benefits, but it cannot be a "right" to force another to commit murder.

Laura(southernxyl) said...

She always said she would never let her kids "change her life".

Ouch. My daughter changed my life immeasurably for the better. Can't imagine wanting it any other way.

I wonder about people who cannot tolerate any complications. No deviation from the perfect cookie-cutter life. What do they do when something unasked-for happens that they can't put aside or wish away?

Also, you're right about doctors not being forced to assist in suicide, but there's a certain amount of noise right now about doctors and hospitals that don't want to perform abortions. I keep getting the impression that something almost slips under the radar, then people make a stink and then there's the public announcement of "we were never going to do that, of course".

william Peace said...

Claire, That is so sad about your mom. You are doing what any other loving parent would do for their child. You have a different and hard road but the rewards are likewise, different and yet rewarding. And like Laura noted kids change you in ways that are wonderful. Indeed, that change is the best part of parenting.

Laura, You make a great point: doctors can refuse to participate in an abortion and face no consequences. Yet if they refuse to assist in a suicide the consequences are potentially serious.

Lore said...

Oh I get that, I am also registered as legally Deafblind in New Zealand and I get the "Oh I would rather be blind then deaf" as well as the wheelchair comments, I think next time I will say "I would much rather be disabled then ignorant and uneducated"