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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.

Monday, August 31, 2009

Flying Can be Hassle Free

My son and I spent the last week in the Seattle area. We ate our way through Pike Street Market, thoroughly enjoying outstanding produce and fresh sea food. We also spent much time people watching. My son looked at a few colleges he is interested in attending when he graduates from high-school. As for me, I forgot how much I enjoy urban life. Seattle is a vibrant city, has wonderful museums, and the waterfront is beautiful. What I did not enjoy was the crowds. It never ceases to amaze me how people react to my presence. I lost count of the times I heard "Watch out a wheelchair!" What this means is a mystery. I have not heard of any run away wheelchair users hell bent on injuring those that ambulate on two feet. What exactly are people watching out for? Are they afraid I will crash into them or are they just afraid of my presence. I eventually had enough of this and during the week a proverbial light bulb went off in my head. When a person stated "Watch out for the wheelchair" I would turn to my son an mimic their voice: "Watch out for the lady in the pink shirt". In return I got a few puzzled looks, one or two nasty replies, and much to my delight a few people seemed to get it. The comment, "watch out for the wheelchair" was dehumanizing and unnecessary. A small victory was had and I was proud to apply my anthropological knowledge to an every day situation. I felt very Goffmanesque!

What was really remarkable about our trip was how unremarkable our flight to and from Seattle was. I have always relied on major airlines such as Delta, Northwest, United, American, etc. My experience with these airlines is routinely horrible (exceptions exist of course). I have found ground and flight crews to be uniformly rude, demeaning, and uncoperative. I understand why this is the case. They are under intense pressure, over worked, under paid, and confronted by stressed out passengers who too often check their luggage and brains. However, I am a veteran traveler, need minimal or no help, and know how to board a plane quickly. What bothers me the most about airlines is the look and attitude airline employees seem to reserve for passengers with a disability. For those who travel a lot you will know what I am referring to: a look of disadain and dread is common when we appear. I often feel as though when I arrive to the gate I have the plague. This did not happen on our trip to Seattle. We flew on Jet Blue, an airline I have avoided in the past because I thought discount airlines would provide inferior service. When making reservations I wondered about this line of reasoning. No airline provides adequate customer support so why should I pay extra to be treated rudely? Screw Delta and Northwest.

I assumed Jet Blue would be like every other airline and treat me and my son poorly. Yet a funny thing happened on our trip. We were treated the same as any other passenger. Sure we still had to board first and got off last--standard operating procedure for every airline. An aisle chair was at the gate, on board the plane, and this was perceived by Jet Blue emplyees to be the norm. This is what I never feel like when I fly--normal. My presense was not perceived to be out of the ordinary, getting on and off the plane was stress free, and employees were polite. I have no idea if this is the norm for Jet Blue. Maybe we just got lucky. However I have heard from friends who fly on a regular basis that Jet Blue treats passengers with a disability like anyone else. What a radical idea! I wonder if this is corporate policy or due to the fact Jet Blue provides no services historically associated with airline travel. Expectations are severely limited. Jet Blue serves no food though free snacks and soft drinks are provided. They also charge passengers for every conceiveble item: $7 for a pillow and blanket, $2 for head phones and I was too cheap to inquire about the price of a movie. I was too happy regaling in my normality. Jet Blue won my business for the most basic reason--I was treated with respect and dignity.