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Wednesday, July 22, 2009

The Politics of Handicapped Parking

In the last year I have noticed a change in handicapped parking. This change has nothing to do with the fact the spots are always filled by people that do not appear to be handicapped. Frankly, I am so discouraged that I rarely try to park in this area. However, in the last few months I have concluded that I no longer have the right to park in handicapped parking. If I can can ski and kayak for miles upon miles do I really need to be 10 feet from the entrance to the supermarket? My son and I jokingly call handicapped parking "old people parking". We do not mean this in a nasty way. There are many elderly residents near our home who need to park close to the entrance. I watch these people get out of their car and slowly walk to the supermarket and think to myself they need the spot far more than I do. The main problem I have parking is that I need extra space to get in and out of my car. The wide spaces in handicapped parking are ideal. Instead I now tend to park off center or far away and take a spot where I doubt a person will use the park next to me. This works most of the time.

In the odd event I use handicapped parking I have noted a new phenomenon is taking place. When use handicapped parking some people object to my presence. Perhaps the fact I drive a VW SUV replete with kayak racks figures into their objection. And yes the people that object to my presence cannot help but know I use a wheelchair. The people who object are usually elderly or little kids. To me, this is a sign of social progress. The little kids want to know "why should that guy use handicapped parking?" This is a good question. If people with a disability want to reject the medical model of disability this is one consequence. Hence I too wonder why do I have handicapped parking plates? The practical answer is yes I need handicapped plates. I need the plates not because I need to be close to the entrance know traversing the parking lot is dangerous. I cannot tell you how many times I have nearly been hit by a car speeding along in the parking lot. Thus when I go to the mall or a super store like the Home Depot I use handicapped parking. I don't like doing this one bit. Sure handicapped parking is abused in the extreme. I estimate half of the people that use these spots have no need to use them and I wonder if I fit within this group.

When an elderly person asks me why I am in handicapped parking they take a long look at my car and the kayak roof rack. Often they remark I look fit, strong, and bet I could push my wheelchair far and paddle my boat a long way. This observation is correct. Like the little kids that ask me about handicapped parking, these elderly folks have a point. A good one at that. The question "why do I use handicapped parking" reinforces that I need to live by what I preach. I always write about the same topic on this blog and hammer home a civil rights viewpoint. Hence when I read the following words by Sandy Lahmann in the Summit Daily News I decided I no longer have the right to park in handicapped parking:

"It's time to recognize that disability is not always a medical experience. The medical aspects of disability are not the defining aspects of disability. Throw out the medical model.
Instead, disability rights activists promote the socio-political model of disability. Disability is not a medical problem. Disability is a social and political problem. It's not my medical status as a person with a disability that holds me back or gets in my way. It's my social and political status as a person with a disability that holds me back and gets in my way.
The biggest problems for myself and other people with disabilities include difficulty obtaining meaningful employment despite having education and skills, being stuck as a result with an income below poverty level, difficulty accessing transportation services, and prejudicial attitudes."

Ms. Lahmann is 100% correct. The problems I confront daily are social and have nothing to do with parking near the entrance to stores where I shop. I will leave those spots to the people that have a demonstrated physical need. My refusal to use handicapped parking is political and practical. If I am going to preach about and advocate for a social model of disability I need to live my life in a way that reflects that stance. At the practical level, I do not have a demonstrated physical need to park in handicapped parking. Hence, I am not truly entitled to use these spots. My use of them now is based on an out dated medical model of disability. The real test of my dedication to a social model of disability will come in the days, weeks and months to come. I am not going to go to motor vehicles and change my plates. That would be too much of a hassle, one hard to explain to a disinterested New York State Employee (though a perverse part of me would like to have this social encounter). The real challenge will come when it is rainy or snowy and the parking lot is filled. Will I drive around and around like millions of others or will I snag one of those prime spots near the entrance. I for one hope I have the dedication to live by words and political beliefs. As my son points out to me once in a while, "Dad, equality sucks".

Sunday, July 19, 2009

Peter Singer and Health Care Reform

For the past few days Peter Singer's article "Why We Must Ration Health Care" published by the New York Times has been listed in the top ten most popular articles read on the NYT homepage. Singer is a "name scholar", sure to prompt a strong if not violent reaction from readers. I was once one of these people as Singer's writings could make me furious within paragraphs. I am no longer angered by Singer though his work and its influence on Obama's plans for health care reform worry me greatly. I am worried because significant changes in our health care system are inevitable and needed. The changes that are ahead of us will change the lives of the elderly, disabled, chronically sick, terminally ill, and those people with serious health problems such as cancer and a multitude of other conditions. What do these populations share in common? They are expensive and their lives are not valued. This is a social and economic problem. Scholars and activists have no neat ready solutions for the social problems we are confronted with today with regard to health care. No tidy sound bites make the national news. No nuanced debate is taking place that appeals to a general audience. In this void we have people like Singer who are described as bioethicists but are in fact ill tempered polemicists pushing a particular viewpoint. Thus when I read Singer's aforementioned article it struck me as more of the same polemics with a particular focus on QALY--quality adjusted life year.

For those unfamiliar with the health care industry, lacking any experience with disability or illness, and who don't have a clue as to what ableism is Singer's position is seductive. The health care system in America is hopelessly flawed--agreed. Rationing in health care already exists--agreed. Too many people suffer or die--agreed. Medical care is shockingly expensive--agreed. We need to maximize the "bang for our buck" as Obama puts it--agreed (sort of). All these statements are put in terms we can all directly relate to--starkly economic words. What is not discussed is the down side to a strictly economic discussion. For instance, Singer correctly points out economists have used QALY for 30 years to compare the cost effectiveness of medical procedures in this country and abroad. Singer argues that QALY "tells us what brings about the greatest health benefit, irrespective of where that benefit falls". Singer is half correct. QALY indicates the greatest economic benefit but significant problems arise when we start to think about the value of human life. Singer loves to use disability as an example in his work. He discusses a "hypothetical assumption that a year with quadraplegia is valued at only half as much as a year without". How he comes up with this hypothetical figure I do not know. What I do know is that people who are quadriplegics would strongly disagree about the value of their life post injury has to them. I also know, as do doctors, nurses, insurance companies, nurses, social workers, nursing homes, and many others that living a life as a quadriplegic or a paraplegic for that matter is expensive. Some of the problems encountered by paralyzed people are directly related to their physical condition (the vast majority have well established solutions) but the real issues are less medical and economic than they are social. No price tag can be placed on the social problems encountered by people with a disability. In contrast, it sure is easy to inflame the public when one writes about how much a wheelchair costs or the lifetime economic impact disability has on one's life. What is lost is the social reasons why life with a disability is so expensive and why stigma is still attached to disability. No one wants to think about why 66% of people with a disability are unemployed and likely without health insurance. The result is we as a culture consider some people to be costly--those populations I have already mentioned like the disabled. If we want to maximize health care benefits do you think any money will be spent on the elderly, terminally ill, or disabled people? The skeptic in me wants to scream "not a chance". A more likely scenario is we will spend as much as we value a given life. Thus if you are sick, disabled or elderly you are screwed. These people, humans one and all, are screwed because their lives are not valued and from an economic viewpoint not worthy of saving. These people are losers and remind me of Susan Sontag's seminal work Illness as a Metphor. Illness, Sontag wrote, was the "nightside of life". Singer does not think about the "nightside of life", he wants to divert our attention away from this sort of discussion. What Singer proposes via ideas like using QALY is nothing more than a giant smokescreen. He wants to hide the human element of health care and place a dollar amount on human life. Perhaps this should make me angrier than it does.

What puzzles me the most about Singer is why the NYT loves to publish his work. I suppose his name helps sell papers and fills a void. The void I refer to is how do we fix the health care system and make it accessible and affordable to all Americans? I wish I had an answer to this question and I bet if I did I would be a very rich and powerful man. Sadly, I have no faith the American government, Obama included, is going to provide the people of our nation with an efficient solution. If you have not noticed the government does not exactly operate all that efficiently. As a New Yorker this thought strikes me ever time I listen to the news about what is going on in Albany or visit the department of motor vehicles. My snide comments do not mean I am opposed to health care reform, or worse yet, I will use that dirt word that sends terror into the heart of my fellow Americans--nationalized medicine. To me health care reform comes down to choosing between the lesser of two evils or maybe even a hyrid system: Our choices as I see them are maintaining the current system and "trusting" the corporate structure that dictates how we access health care. This is untenable in my estimation. Alternatively, we can place our trust in the American government and look toward other countries that already operate health care systems such as those in Britain and Canada. This too is untenable. A possible solution lies between these extremes and given Obama's penchant for compromise this seems more likely. The real key is who will Obama listen to and seek council with. Obviously, Singer has the attention of the general public and the Obama administration. This causes me great concern in large part because I think Obama has distanced himself from disability rights groups and disability issues since he was elected. I thus wonder in his haste to foster change will Obama be like Singer and ignore the human element of health care thereby avoiding thinking about Sontag's nightside of life.