November 17, 2012

Defining some concerns

I’ve been reading William Peace’s blog for some time now as well as Louise’s blog and recently they wrote pieces which seem to me to be connected. Peace describes his frustration and yes, anger, at not being seen as an equal. Because for many, perhaps a majority, looking at a person in a wheelchair causes their psychology to look for a solution to the fact that they are not the same, yet consensus thought tells them that they should be accorded equal status. What lies at the heart of this is the inability to see a disabled person as being the same as them, which is actually the case. As we have tremendous differences, thus we are the same.

This dichotomy is resolved by seeing the disabled as people in need of help. They are given that help because they need it, correct? And in giving this help we can add to that sense of worth which has obviously been eroded by the fact that they are disabled. Or, are they the same person, more or less, who want to get on with their regular lives with a somewhat different perspective and ability? When someone like Peace changed from being bipedal to ‘chair bound’ did their personality also change? Their ability to think and interact? What really changed? I believe not much, except for what society imposes on such a person. That may sound like an easy scapegoat to hang blame on. Society is at fault. But it’s just a word, a description of consensus opinion. In the end society is influenced by many factors and is made out of people’s behavior and opinions but mostly, anthropologically speaking, by what people don’t do. If a way of thinking is implemented and we are not even aware of it such as cultural bias, or perhaps the good example in the special needs community the campaign to eradicate the use of the word “retard” as nomenclature that saw a crescendo over the last year, change is impossible. Thus the need for a different way of looking at things, which Peace and many shout from the rooftops, must start with individuals.

An anecdote that Peace shares about changing a flat tire and being offered help, despite that he didn’t attempt to wave anyone down showing that he felt confident he could do the repair by himself, shows how the perception of a wheelchair carries with it the innate sense of inability. Peace rails against this kind of thinking, which I believe to understand; it condescends because while the intention is good it is also very misguided.

In Louise’s piece she asks if successfully advocating for the acceptance of difference (disability) doesn’t require a proprietary lexicon, not only in word but in way of thinking.

What isn’t needed is some complacent catch-phrase like, perception of difference is evolving. But does a more evolved way of looking at our differences requires a new canon of words and phrases? Do these things go hand in hand? Probably, as an anthropologist, William Peace could answer that question. Did civil rights movements in France or America, revolutions in South America, have their own jargon and catchphrases? From a first look it seems to me that there are also generational colloquiums, which represent the perspective of a known concept but in a different context.  Should there be new meaning applied to old concepts to shape people’s understanding or introduce newspeak to sweep out old perceptions? Because what is needed here, in order to procure a better relationship to the special needs or disabled segment of society is nothing short of a massive shift in how we view our coexistence.
In today’s world of electronic medium social change appears just a tweet away, while the truth is that such fomentation builds over time until the atmosphere of change becomes the change itself.

Will the masses be swayed to perceive ‘disability’ as William Peace envisions it? Or as special needs parents who advocate inclusion demand? True change, the deep change of a paradigm shift, happens when the need exists and carries enough momentum. A momentum that is often fueled by outrage. Velvet revolutions are rare; change seems to be more and more violent in nature around the world. Some claim societal values as a whole are eroding and the first victims, as aptly seen in the UK, are the values of tolerance towards disabled, compromised individuals. The likelihood of moving from that handicapped view of disabled to simply an accepted difference is becoming smaller, as a shift in power structures solidifies utilitarian world views. Are we moving toward a ‘the strong will survive’ causality? But, haven’t we been there already and isn’t it time to move toward an egalitarian world view?

Just as there are vast differences in how we perceive, how we walk, what foods we like and what our abilities are, we will not see some kind of unification theory of societal values. At best we will see what we already have, that the law of averages, a kind of mediocrity, is the essence of communal living. To add gasoline to the fire, as a species we are driven to push the boundaries of our physical environment, squash previous ‘impossibilities’ and we laud extreme athletes. This adulation of very extreme sports which kill and maim daily is of particular worry to me.  And then we nod appreciatively when we see skydiving wheelchairs and the special Olympics, because they are involved in activities which mimic those of the adulated.

A few years ago there was a story here of a man who stopped by the side of the road to change his flat. He got into his wheelchair and proceeded to change the tire. It was winter, but the kind of winter you have in Israel or California, cold but not freezing. He left his cellular in the car, which was standing on the muddy shoulder of a small byway. Apparently he slipped from his chair and in the mud was unable to clamber back. Perhaps he slid a little ways away from the car. The family were worried sick and tried calling the phone carrier to get a lock on his location. They refused and the family waited several hours before notifying the police. As soon as the police were in the picture the phone company revealed his (approximate) location and a search was mounted. By the time they got to him he was pronounced dead due to hypothermia.

This may sound like exactly the kind of rebuttal story a wheelchair bound advocate dreads to hear. Interestingly it may be due to poor circulation associated with paralysis that hastened the effects of the cold, leading to the man’s death. But here’s the rub, if the family had responded sooner with a plea to police his death would most likely have been prevented. More so, anyone can slip in the mud, hurt themselves, lose consciousness and perish. Living in Canada I recall the story of a woman who went out of her home in a snowstorm to the convenience store, not more than a hundred meters away. Young and healthy, she became disoriented in the blinding snow and cold and wandered off, found dead the next day.

Two days ago I went in for a rare visit (being the hermit that I am) to the convenience store here in the village and the owner, who always enquires after my son’s wellbeing, told me of his brother in law who had done his annual physical, replete with expansive tests, a few months prior. “You’re healthy as a horse” the doctor proclaimed. Two weeks later his skin color changed to yellow and a week after that his wife, a nurse, took him to hospital where he was diagnosed with leukemia. A partial match was made with his sister’s bone marrow but the transplant didn’t take. Now, with him bedridden the family life is, to put it euphemistically, in disarray and they struggle to make ends meet. There are mortgage payments, school tuitions and extra medical expenses of course, besides the devastation of the illness itself.

Here, to borrow a phrase from popular culture, lies the golden snitch; without proper support mechanisms in play, whose existence is dependent upon large scale awareness of its need, we all can change into someone, who like my son, cannot function without care. From that frame of mind, of proper support mechanisms, flows an entire world of diversity in care, exposes a disparity between perceived social values and truly assimilated values and with it a better understanding of what we don’t do in society for a more cohesive coexistence.
We are very concerned today with having our voices heard. It reminds me a bit of the wave of independence which swept Eastern Europe leading up to and as after effect of the Soviet Union collapse. We crave recognition. Facebook and the like allow us to take it further and recreate our personas or at least tweak them and the din of cyber noise is rising; values are changing as perceptions are shaped by online experience in much more pronounced fashion than the 1970’s concern over how television is influencing children. Where does popular opinion lie? With popular culture of course. Younger people today are being influenced more and more by the online culture and its most popular exhibits.

Suffering that goes on in care in hospitals, institutes or the home is largely not discussed. Differences, down syndrome, disability from accidents (no wonder there is a culture of ‘regaining normality’ pushed tirelessly) are not mainstream.

So we have to keep on pushing until we can find we have ‘come home’ to the world we know we should really have. What options do we have, cynicism? The, “shit happens” confabulation?

1 comment:

  1. Heavy and ponderous thoughts, Eric. I have also followed Dr. Peace and recently visited BLOOM.
    When a person identifies with their disability, I believe they partially surrender their self to a circumstance, be it a circumstance of birth or a circumstance of accident.Society is an abstraction and society cannot create a perception of being equal or less than equal. Individual people with whom we interact reinforce our perception of equality or less than equal. There are good people who understand us and there are others who do not....most are simply indifferent.
    “The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind.” -William James
    I believe that we define our worth and that we, in turn, attract the same that we fear. We remain frozen in worry or defeated by fear. We believe that we have become victims of our circumstances. As our thoughts remain negative or mostly unconscious, we end up attracting the same by default.
    Our perceptions define our beliefs and we battle against some our experiences to prevent them from affecting our perceptions. Some people are good and kind, some people turn away from us and our kids and friends in disdain, some remain indifferent to our conditions. But, ultimately, we, the disabled and the caregivers, determine which experiences define our beliefs.
    I know may able-disabled people and many totally disabled people. Each has defined themselves by the type of people and experiences they allow into their lives. When some have no choices, we must protect them: and, we do!
    I am a bit disturbed by flat tire stories; not because they may reinforce someone's perception that they are not perceived as able and equal. I am disturbed because there are good people who want to help any person in need, not because they perceive the ones in need to be unequal, but simply because they are good people; stopping to assist a man with a flat tire, stopping to visit the elderly and the infirm, inviting the lonely for a meal, etc. Offers of assistance need not be seen as gratuitous nor help as ingenuous...there are many good people in the world who offer to do good because it is simply right. It's a matter of our perception and belief in the goodness of some of our species. Perceptions define our beliefs and we act upon our beliefs.
    BTW, I always get taken aback by the term bipedal...makes me feel that I share the same structural adaptation and evolution as a common ostrich. The intelligent designer erred when he allowed us to evolve from traversing the earth on all fours...we would have stronger backs and be less distorted by the effects of gravity pulling us from our upright position. On the other hand, chiropractors would be out of business.