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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.

2 comments:

Becs said...

Imagine the amazement of a boomer who wakes up with RA and realizes that he can't get into his favorite diner because the steps are too high and there isn't a ramp.

I think this might go a ways to further access.

But until disability rights are seen as civil rights as vital and pressing as civil rights for different races, sexual orientation, and women's rights, I don't hold much hope.

william Peace said...

Becs, The boomers do not impress me at all. I consider many of them to be a bunch of narcisstic babies who were lucky enough to grow up and work during an era of amazing prosperity in America. Now as they age they are shocked the world can be an inhospitable place and do not know what to do when confronted by discrimination. Add disability to this mix and many cannot cope with the shock and horror associated with the lack of access. Will they protest? Not a chance and it will be left to hard asses to enforce the law such as the ADA that is too often ignored. Like you, I do not have much hope for change.