Search This Blog

Wednesday, September 9, 2009

Wheelchair Bound

I do not get into semantic discussions about the differences between disabled, handicapped, physically challenged, crippled, differently abled, etc. I find such discussions boring and pointless. The average American is far too unaware of disability to grasp the implications of such a discussion. I prefer to spend my time focusing on disability rights as civil rights, a connection very few people make in spite of the fact the ADA was passed almost 20 years ago. However, one term I despise is wheelchair bound. This pops up in headlines on a regular basis and I find it shockingly dehumanizing. I am inspired to write about this today because I have been reading reports about the "wheelchair bound" woman that was shouted down at a town hall meeting. The town hall meeting in question was organized by Congressman Frank Pallone, a NJ Democrat. The meeting took place in Red Bank, NJ and You Tube videos illustrate the meeting was ugly--it brought out the worst in people rather than a debate about the merits of the proposed health care reform pushed by President Obama. I for one would never attend such a meeting. I know my views would be decided unwelcome and I do not want to subject myself to the sort of abuse the "wheelchair bound woman" was subjected to. The woman in question pointed out what many people with a disability know all too well: access to health care for people with a disability is expensive and virtually impossible to access without full time employment and benefits. Given the fact 66% of people with a disability are unemployed nearly two thirds lack adequate health care. The woman pointed out this was wrong and that she was worried she would lose her home because she had to pay so much for required medications.

The reaction of people at the town hall meeting to the woman above was as I expected: nasty and mean spirited. What I did not expect was the press reaction. Multiple news stories have appeared and all state a new low was set by the audience in question that shouted down a "wheelchair bound woman". In many reports the woman's name is not even mentioned. The new low that has been set was not established by the rude people that attended the town hall meeting. Their behavior was boorish in the extreme, totally unacceptable by all standards. To me, the new low was set by the press that characterized the woman as "wheelchair bound". This term is as antiquated as it is dehumanizing. I assure you I am not nor have I ever been "bound to my wheelchair". What people do not understand is that my wheelchair, all wheelchairs, are adaptive devices that liberate and empower people with a host of disabilities. I think my wheelchair is cool. Little kids think my wheelchair is very cool. In fact I was once favorable compared to a Power Ranger when eating at a local pizza place by a pre-school aged boy. This was a heady compliment. The problem is that people are taught wheelchairs are bad and those that use them tragic figures. I forcefully reject such faulty logic. The reality is that using a wheelchair is in some environments a distinct advantage. I never get tired in museums and can navigate an airline terminal far faster than a person walking. Can a wheelchair be limiting? Sure, finding hiking trails wide enough is always a problem as they are usual narrow foot paths. Some major Western cities present difficulties. For instance, navigating from the Seattle waterfront to the center of the city can be challenge due to steep hills. However, a little creativity and use of public garages and elevators negates this problem.

The point I am trying to emphasize is that a wheelchair is an adaptive device and an efficient one. I am no more bound to a wheelchair than one is bound to their feet or bipedal locomotion. The stigma attached to the use of a wheelchair is a social designation that is simply wrong and an injustice to every wheelchair user. Thus I am appalled when a few minutes ago I googled wheelchair bound. The results were as follows:

"Wheelchair-Bound Woman Shouted Down"
"Traveling with the Wheelchair Bound"
"School Emergency Policy: Leave Wheelchair Bound Behind"
"Wheelchair-bound triathlete Embraces Life"
"Wheelchair Bound Man Struck and Killed by Car"
"Wheelchair Bound Woman Dies"

Replace the words "wheelchair bound" with "bipedal" and do they make sense? In a word, no. They do not make sense because it is not socially acceptable to dehumanize those that walk with two feet. However, the same dehumanization is acceptable when referring to people that use a wheelchair. Note here the word use. I use a wheelchair like one uses their legs. It is nothing more and nothing less than a different way to navigate the world. The problems I encounter are thus not physical but social, the failure of society to negotiate difference. In my case the use of a wheelchair. This is as wrong as the headlines above and frankly it pisses me off. I am angry not because of my inability to walk but because I am not treated equally, that is with the same respect as a man that can walk. I am weary of this lack of respect and had hoped at this point in my life society would have evolved more than it has. Headlines with the words "wheelchair bound" in them reveal nothing about the person being written about but rather a significant social failure that needlessly makes life more difficult for millions of Americans.

Tuesday, September 8, 2009

Lessons Learned Among the Old and Young

My Labor weekend Labor was marked by not one but two parties. This is unusual for me because I hate parties. I do not like socializing among groups of more than a few people. At a practical level as the only wheelchair user at virtually every party I attend conversations take place two feet above my head. I always miss much of what is said and groups of bipedal people are hard to navigate around. And, truth be told, I simply do like being around large groups of people. Using a wheelchair simply gives me an excuse to avoid such experiences though there is a grounding in reality for my disliking parties. Regardless, the two parties I attended could not have been more different and yet paradoxically the same. The first party was at my home--a truly rare event. It was not actually my party but my son who invited 10 of his male and female friends over to our pool to discuss the up coming year for the local Venture Crew we are involved with (a coed part of the Boy Scouts for older teens). My son had a great time as I suspect his friends did. As one of three adults present, we had the plague. The teens avoided us and maintained their own private space. I respect this. The years before college are hard for a teenager as they are seeking to create an identity and philosophy of life that fits their belief system. Teenagers also struggle with authority for good reason. Too often they are not treated with respect but then again teenagers can be shockingly rude (they can be stunningly thoughtful at the other end of the spectrum). The second party I attended was a very large cook out where my mother lives. This was a community wide event held at a facility for older folks. My Mother lives at one of the few Kendal facilities, a continuing care residence for older folks organized by the Quakers. My mother lives within a vibrant community where old folks do not go to die but instead continue life with a built in support system based on individual need. I am tremendously impressed by those that live where my mother is and it is a truly unique environment. It is nothing like a nursing home or assisted living center though such options exist within the Kendal facility. What makes Kendal unique is the way older people live--by live I mean get the most out of life via festive dinners, parties, classes, on and off site events, lectures, etc. At the cook out my family and many others attended a good time was had and the weather was great.

So, to return to my original question: how were these parties different and the same? They were different in that the teenagers ate about as much food as I imagine an army might consume. They sucked down coke like it was water and it appeared as though they had not had a thing to drink in ages. They swam for hours on end, yelled, and whooped it up. They played music too loud via an ipod speaker and had serious discussions about various play lists. They mourned the fact they would be stuck in a classroom within 48 hours and complained bitterly about extended summer reading lists and homework for AP classes. In contrast the party where my mother lived had no ipod or music of any sort. The only people in the pool were children under 10 years old. Tables were organized, had nice table clothes on them and things were as organized as humanly possible. Food was cooked by real chefs and the diversity and quality was outstanding. Nothing was left to chance.

None of the above is a surprise. What is of interest to me was the similarities I observed. At both parties everyone had a great time. Both physical environments were accessible to me, an all too rare experience. I did not worry about getting into a bathroom--my only worry in this regard was to be sure my toilets were clean. Thus I got to drink as much fluid as desired. But what really stood out, pun intended, was how easily and relaxed I felt. I did not feel excluded or like a rare species infrequently sighted. Sure I was the only wheelchair user at my home but the adults present and surely my sons peers have long ago dismissed my crippled body as a social barrier. In fact what struck me was how normal I felt. My sons friends do not think twice about my disability--or at least it appears as though they don't consider it a major issue. We joke about my old age--yes 49 is very, very old to a teenager. We goof on how slow I ski and my son teases me that I paddle my kayak at about the same pace a turtle swims. This all leads to good natured chuckles. Likewise when I was with my mother, I do not stick out and felt normal. I was one of quite a few people that used a wheelchair. Other adaptive devices such as walkers and canes abounded. What I saw were people who have adapted to old age with grace and dignity. Then it struck me: I saw and was interacting in an environment that presented no physical or social barriers. This was empowering to the teenagers my son had over, the old folks that live in the same community as my mother, their families, and myself.

As I fell asleep last night I thought that this sense of normalcy should be the norm. The presence of all people with a disability should not be unusual. According to statistics about 15 to 20% of Americans are disabled in some way. Why then are people with a disability so disenfranchised? I would argue people with a disability are needlessly disenfranchised and knowingly excluded. We remain excluded because disability based prejudice is socially accepted and taught by parents, schools, and institutions such as courts and in the hallowed halls of democracy. Of course disability based prejudice is not the same as racial bigotry, it is far more subtle. We do not have segregation of the sort blacks experienced in the 1950s. We have a sanitized form of prejudice in spite of forty years of legislation designed to empower people with disabilities. We talk as Sarah Palin did about "special children" whom we ship off to "special schools" or "resource rooms". We bus children on "short buses" that carry significant stigma. We bemoan the lack of community service for adults with disabilities yet do nothing more than complain. We isolate people with disabilities at stadiums where pro sports are played in a few sections for the handicapped and force us to call a special number to get those tickets. We force people such as myself who use a wheelchair to be the very first person on a plane and the very last person off. We have para transit bus services that are notoriously bad and poorly funded. At universities books about disability based prejudice are rarely read much less required. I could go on for paragraphs if not pages about the social and environmental inequities I encounter regularly. And what sort of response do I get when I complain? The most common response is an awkward silence followed by a mumbled apology and the issue is quickly forgotten. I am perceived to be a narcisstic individual interested in only my own needs to the exclusion of the needs of the many and a price tag is put on access. I am resented for any accommodation because we Americans love to delude ourselves into thinking we are all equal and should be treated the same. Worse yet, I am thought to have a "chip on my shoulder" because I cannot walk. The fact the law states equal access is a civil right not part of bitterness on my part is never considered. This all makes me crazy because I learned this weekend it does not have to be that way. I have tailored my environment to meet my needs and appear to be accepted by son's peers, an acceptance I find encouraging. The environment my mother lives in is accessible and accepting as well. So, why cannot the rest of society accept the presence of people with a disability? The answer is as plan as it is simple. There is no social demand for equality. Ramps, elevators, wheelchairs, etc. are great adaptive devices but mean little when social stigma and exclusion are still thought to be the norm. What we need, what American society needs, is a new norm, the norm of inclusion not exclusion.