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Monday, December 13, 2010

Monday Morning Thoughts

Two days ago I felt the future was bright. I blame or credit the itty bit of snow we had. We had enough flurries to coat the ground. It was truly beautiful. I had a fire in my wood burning stove, cracked the living room sliding door open and felt the chill air be whipped into submission by the heat of the room. I thought that life was indeed sweet and that our culture has evolved in my lifetime. Based on the way information is now shared with the click of a few buttons on a computer I suspect social change will take place with increasing speed. What do I do when I feel so optimistic? Well I spoil myself and read the work of people I deeply admire. Hence I went to read Stephen Kuusisto always thought provoking writing at Planet of the Blind. Now this man can write. This man is a scholar’s scholar. He is also funny in the extreme. But what I love about his work the most is his ability to make me think. And I never cease to be amazed that we often share the same views and visions of the future. A few days ago, December 5 to be precise Kuususto wrote:

The stories arrive from every corner: a woman in japan who has had a stroke is walking with the aid of motorized legs; an American soldier is returning to combat duty with a graphite foot; a blind man in Finland has received an implanted microchip in his retina and he can see for the first time in his life. The changing nature of disability is in fact a cyborg manifestation of our broader human future—soon everyone will be part flesh and compensatory device.
“What’s that Mommy?”
“That’s a picture of the old day when people just had arms and legs”.

When I read this I thought of many experiences I had as an adaptive skier last winter. I felt like the Pied Piper of the slopes—kids were drawn to me like a magnet. My sit ski made me without question cool! Adults too were intrigued. I was asked more than once if it was possible to rent a sit ski as it looked like fun. Such experiences led me to conclude that within the realm of adaptive sports, skiing in particular, there is a cool factor involved in being an adaptive athlete. This is particularly true with kids—they are drawn to technology of all sorts. My son for instance thinks my mother’s prosthetic limb is the height of cool. When he was younger he termed her “The Grandma-nator”, the obvious reference here to the Terminator movies. No such cool factor however extends to disability within the academic and medical realm. Disability among academics is not seen as positive in any way. In fact a great deal of animosity exists that is directed to students with disabilities that seek any of accommodations. For instance, extra time on tests is perceived as akin to cheating or an unfair advantage. Likewise, spending money on ramps, elevators and electric doors is seen as a waste of scarce resources for a limited number of people. This thought process makes me crazy. It is just so wrong and narrow minded that is boggles my mind.

Why is disability, especially an obvious one such as paralysis or blindness such a big deal? It does not take a person long to learn how to adapt to such physical deficits. Indeed, there are some advantages to being paralyzed and here I am not thinking of handicapped parking! The point is I take great pride in my body and what it can do. I see nothing inherently “wrong” with myself or my body. Most people do not share this sentiment. By most people, I mean all those I encounter in a day. Disability we are taught in subtle and overt ways is bad. Everything must be done personally and medically to “overcome” a physical deficit. But no one stops to think what happens when a physical deficit is permanent like my paralysis. The fact is we people with a disability simply move on with life and incorporate disability into our lives and concept of self. It is part of our very idenity. Sadly, most do not get this at a fundamental level.

Eric Parens, a bioethcist I know and respect has written about the above disconnect between how a person with and without a disability think about disability in the broadest sense of the term. He wrote that when he initially heard disabled people state their disability was a central part of their identity he was taken aback. Parens is not proud of this fact but her sure as hell is honest. According Parens, “I practiced some armchair psychoanalysis. Yes, yes, that’s very nice. But let’s be honest: you’re in denial. The more I heard about people who say that the most difficult thing about having a disability was the way temporarily able-bodied people treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.”

The above quote was found in “Respecting Children with Disabilities—and Their Parents” (Hastings Center Report, 2009). Parens gets it! He was capable of putting aside his own learned bias and accepting people, in this case those with disabilities, for who they are as humans. If he can do this and children appear to be inherently capable of accepting disability why are adults so resistant to this line of thought? I must reluctantly conclude fear is a factor. Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice. I have pondered this for 30+ years and have yet to come to an adequate resolution in my mind. I refuse to accept the status quo and hope through technology, social evolution, and superior exchange of information we can hope for a better future. One in which a paralyzed person such as myself can read in history books what discrimination was like.


william Peace said...

Sounds like the American version of New Mobility. I never cease to be amazed by the lack of vibrant magazines that are disability related. This is in stark contrast to the many fine blogs that exist online. I guess avertisers think there is mo profit in disability.

Unknown said...

Ever notice that on "reality shows", nothing is real?
Just get me one of those skimpy little outfits and a tall show girl's headdress and I'll go on Wheeling...ooops...Dancing With the Stars!

william Peace said...

Ginger, Ugh reality shows are not kind in terms of disability. I will confess though I like Top Chef. As for disability Little People Big World in spite of efforts to make the family look bad actually was quite good. Aside from their height, they came across as a very typical family with as much dysfunction as anyone else. I found the way the parents coped with screwing up kids and tension in a marriage ever so ordinary.

Unknown said...

I am not fond of television. However it would be a hoot, like Halloween, to go on some "Reality Show" to heighten awareness for the needs of people of all ages with disabilities.
Guess I'm too old to care what people think of me.

Eric Fischer said...

You write: "Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice."
But I do not think it is this fear that drives people to look scornfully at someone in a wheelchair or decry waisted tax payers money for public access.

It is a much more deep seated fear. Seeing a disabled child can evoke this fear less than an adult because of lingering parental instinct.

Obviously when you become an adult you must be self sufficient. Now i boldly state that Seeing a person in a wheelchair is seeing a threat to the continuation of the healthy species.
It is a remnant of an instinct that also encompasses racial tension where the driving instinct is group homogenicity.
Things are changing slowly but instinctual fears are the slowest to change imo.

Anonymous said...

As a temporarily-able-bodied walkie myself, I hope you'll take my comments as supportive. I think you make a clear argument here, and one that has been a long time dawning on me (to my chagrin).

I've been reading bloggers who use wheelchairs and other assistive devices for a couple of years now, and I'm finally beginning to get what is meant by the idea that "medical condition" does not cause "disability" -- "disability" is socially constructed when the TAB world insists on designing objects and spaces with the presumption that everyone walks or sees or hears or enjoys fragrance without allergy ... etc.

I suspect part of our problem, as a mass culture, is that so many of us in the over-40 generations have grown up in environments where people with adaptive tech were hidden away (except for those who wear eyeglasses). Now that we finally have enough curb cuts so that mobility-challenged folks aren't effectively barred from everyday spaces, some of us are beginning to realize the truth of what you've written in this post.

But, like racism, sexism, ageism, heterosexism, white privilege, etc ... the learning seems appallingly slow. And our mass media are far behind the curve.

Seems to me that you, and Wheelchair Dancer, Wheelchair Kamikaze, Rolling Around in my Head, and others are making an important change to the mass consciousness by your blogging.

Unknown said...

One issue of wheelchairs and taxis is that if the chair is not properly put inside the taxi, there is the possibility of damage and/or theft.
I honestly don't care what age groups and rationale is used against all handicaps. The more publicity we gain, the farther ahead we get.
(Wonder if it would help if I put racing decals on mine or used the Barbie motif.)

Sketching Girl said...

Perhaps one reason for disability discrimination is something I was taught by my parents from an early age. "If you see someone disabled/in a wheelchair, don't stare."

So what does that make you do? Stare, then immediately avert your eyes, as if it is something to be ashamed of, and to be ignored.

Society needs to learn that someone is a wheelchair is equal to an able-bodied person - a living breathing human being who wants to be treated equally. But learning what little we do, we learn to look away, not smile, and not make friends.

Education would help, as would soaps, movies, and TV series having more disabled characters being shown in a good light - i.e. having personalities and being real people.

Just my opinion!