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Friday, January 1, 2010

Assisted Suicide: Legal In Montana

For months I have been expecting the Montana Supreme Court to make assisted suicide legal. On Thursday December 31, this became reality. Montana is now the third state to allow doctor assisted suicide. What exactly does this ruling mean for residents of Montana? Well, doctors can prescribe the required drugs to mentally competent, terminally ill people without worrying about being prosecuted. This may sound reasonable as no one wants a person who is terminally ill to suffer when death is inevitable. But life and deciding who is terminally ill is not always simple or clearly defined. For instance, ALS is a terminal condition and any person diagnosed with this condition will be devastated. This is a reasonable reaction. But this same person can live many years and in some cases be alive decades later (this is not the norm but possible). Here is my concern: what happens if this person lives in Montana? What options will be discussed when ALS is the diagnosis? Will the focus be on loss alone, the slow deterioration of one's physical ability? Will a seemingly good hearted and caring physician state that assisted suicide is a viable option? This will be perfectly legal and a deadly choice some people may choose. The implications do not end with this one example nor are they limited to ALS. Let me turn to something I know a lot about--paralysis. What will happen to an athletically fit young man in his early 20s who experiences a high level spinal cord injury. If he lives in Montana will assisted suicide be a treatment option? I can readily imagine it would be easy to sway such a man to end his life shortly after such an injury. No one wants to be paralyzed, myself included. What if the post spinal cord injury portrait painted by the attending physician is hopelessly bleak? This is not far fetched. Indeed, such an approach was the norm when I was paralyzed. It was assumed high level quadriplegics could have no "quality of life". This assumption was wrong and based not on science or medical facts but a cultural belief that death was preferable to a severe disability like quadriplegia.

There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.

Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.

Wednesday, December 30, 2009

Legit Skiing and Parenting

I am officially out of the holiday season blues. A ski trip to Vermont with my son was the perfect antidote to my depressed mood and the commercialization of Christmas season. Our trip was interesting and highlighted why I love Vermont, skiing, and my son. We skied Sunday in spite of a questionable weather. Sunday morning could lead anyone to question my judgement. We woke up early and drove through rain, heavy rain, to Sugarbush ski resort. When we arrived it was pouring outside. My son thought I was nuts and when we got to the Vermont Adaptive office I was the only student that did not cancel. I was not a popular guy! When my instructor arrived she looked like she just got out of bed and said "I knew you would not cancel". I felt bad as she had to get out of bed on a rotten day. But the skies parted, well sort of, and the conditions were very wet but acceptable. All day the instructor pushed me hard and forced me to ski on intermediate terrain. I like this hard ass approach and for the first day of the season I did well. But the best was yet to come. On Monday the rain turned into snow and over the course of the day almost a foot of snow fell. The conditions improved with each and every run. And an amazing thing happened. Everything I had been told for the last few ski seasons suddenly clicked in my head. I stopped leaning my head into the hill, I was not hammering my right turns, I was looking down hill, I was turning instead of traversing, my riggers were in the correct position, and I was going fast. I am not sure who was happier me or my instructor. But it was my son that made me think and laugh with delight. He skied with us toward the end of the morning and he was full of praise. He said "Dad, that was amazing, it was like legit skiing. You went from the speed of a bike to the international space station". Let me tell you it is hard, almost impossible really, for a parent to impress their seventeen year old son.

We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.

In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.

To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.

From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.