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Tuesday, August 26, 2014

The Inherent and Invisible Beauty and Satisfaction of the Atypical Body

My body is well outside the norm. I have a profound scoleosis. As I age my fused spine is cork screwing to the right. My left hip is dislocated and as a result my left leg is shorter than the right. I have surgical scars from the base of my spine to my neck. I have a large nasty scar from a wound on my right hip that is a visceral reminder to carefully watch my skin. I could go on but you get the point--I am far from the norm. I really like my body. It is well worn and has served me well. I wish others saw what I see. A useful body, a rugged well used body that has endured and thrived. Instead, health care professionals see pathology first and foremost. I am a problem, the symbolic representation that there are limits to what medical technology can do. They see a patient that is complex and different. A patient that will consume too much of their valuable time. This came to mind today as I need to find an internist in the Syracuse area. With a working cell phone I made dozens of calls this morning. I contacted 20 different internists--not one physician would take me on as a patient. The reasons varied.

"The office is not wheelchair accessible".
"Dr. So and So does not accept patients who are paralyzed. You need to see a specialist".
"We do not have an accessible exam table".
"We do not take your insurance carrier".
"Dr So and So is not accepting new patients. The office cannot recommend another physician ".

I hit a brick wall and spent lots of time on hold. I was at first amused by the phone trees I encountered. In recording after recording I heard "If you are experiencing a life threatening medical condition hang up the phone and dial 911". Within 90 minutes the proverbial light bulb went off--cold calling an internists office was a waste of time. Instead I called a patient advocates office. The first words were "We have a doctor shortage in the area. Your insurance is not comprehensive and with your disability it will be a challenge to find an internist.  Your only recourse is to find an urgent care office". I expected this. I knew I would be turned away. Part of the refusal is I am a stranger. I am not hooked into the health care industry in the Syracuse area. Yet for much of my life I have been refused as a patient. In fact the only way to get my foot in the door of an internist or specialist is to have a doctor I already know call the office for me and set up an appointment.  This call is not about my medical care. It is to legitimize my existence. The sad fact is well over 20% of people with a disability are turned away from doctor offices. A female physician based in the Boston area whose name I forget has documented this in various academic journals. This is important work.

What people default to when they encounter a person with a disability is simple: disability is bad. Disability is complicated. People with a disability are continually and chronically ill. What typical others think about is what I cannot do. This has not changed in the last 35 years.  I cannot walk. Oh the horror! Believe me, the inability to walk is not a priority or blip on my screen. Walking is not in any way relevant to my life. Here is the rub. When I see a person with a disability I wonder what can the person do. The disability means nothing. I instantly dismiss what cannot be done. I imagine what is possible. Do this and a world opens up. Hence when I see a quadriplegic I wonder about quad grips for exercise and think damn that power chair can go fast.  I do not see pathology or limits. I see adaptation in its finest form. I see creativity. I also often see lots of duct tape. Real hard ass cripples are devotees of duct tape.

My good friend Steve Kuusisto wrote a great blog post today entitled "Dawkins We Hardly Knew Ye". Link: Like me, Kuusisto was disillusioned by Richard Dawkins Tweet and subsequent non apology for suggesting it was amoral to not terminate a pregnancy knowing the fetus had Down Syndrome.  I urge readers to read what Kuusisto wrote. His post is thought provoking, compelling, and insightful. One line though stuck out for me.

As a person with a disability I know physically deviant life is precious, fascinating, and entirely indescribable by conventional habits of thought.

 This line deeply resonated with me. I was up early this morning--that is my norm. I rise with or just before the sun comes up. I showered and something ordinary turned out to be a remarkable experience. It was really mundane. I transferred from the tub to my wheelchair. The transfer, one of thousands I have made over the years, was a work of beauty. All the parts of my body cooperated. My thrust up was powerful and swift. My leg spasms released at the perfect moment. I lifted my torso up high and softly but with enough authority. I landed in my wheelchair in absolute perfection.  Physical and Occupational therapists would weep with joy if they saw this transfer. Oh, I wish I had a video of this transfer. It would be the perfect teaching tool for an upper level paraplegic. As I marveled silently in awe of what I had just done I became sad. Who could I share this magical moment with? Who would get the grace and beauty involved? What I experienced is indescribable to use Kuusisto's word.  No person without intimate knowledge of paralysis could grasp what I experienced.  I wonder when if this will ever change. As I sat on hold repeatedly, I thought more and more about the transfer from the tub to wheelchair.  Should I tell the physician office "Hey I made a gorgeous transfer today. It was a work of art. A performative act if you will". Instead I held my tongue and listened to person after person turn me way. Indescribable.


A said...

What you're describing is very cinematic.

william Peace said...

A. How so?

A said...

The gestural aspect.

Middle Child said...

Our medical system in Australia is different but not better. For us coming from a large country town there were no real specialists so for any treatment Don would be admitted to the hospital, transferred by air ambo and admitted to the city hospital for the simplest of things. Our whole lives would be put on hold while the specialists dithered about his treatment and he would usually come home with an MRSA infection. Luckily there were years in between. But mostly if we had had local access to a specialist it would have maybe meant just a visit to his surgery. Unsure about how it is for people who live in the cities but no doubt the same attitudes would prevail here as with your country.

spectral_ev said...

thank you for dispatches from the front lines.