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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.

Sunday, August 24, 2014

A Brave New World

I am not a Twitter guy. Years ago I was not a blog guy. Now I am a blog guy and what Syracuse University likes to call a public intellectual. I am not sure how I feel about this moniker. I prefer Bad Cripple because I sure do seem to get people angry when I write about disability rights and especially growth attenuation, a cure for SCI, and my opposition to assisted suicide. I should also note here I do not intentionally try to make people angry. I write from the heart and in a strong manner. I know my views are not widely accepted and out of the norm. I feel a social obligation to be as forceful as possible when I write as many others share my views but cannot articulate them as I do. The point I am trying to get at is that I want to reach as many people as humanly possible. This effort is dependent upon technology and social media.  I must keep up with contemporary culture and all summer my son has been pushing me to get on Twitter. He explained not once or twice but many times why Twitter is important. I am sure he is correct. But here is the rub. I am resisting and a recent news story that broke via Twitter might finally propel me into the world of Twitter.

A few days ago Richard Dawkins got himself into hot water via a poorly worded and deeply offensive Twitter comment. Dawkins has been and remains a controversial figure. He is by degree an ethologist and evolutionary biologist. In the 1970s he wrote the Selfish Gene. More recently (2006) he wrote the God Delusion that was widely read (as in the millions of copies sold). Essentially, Dawkins likes controversy. When he speaks, or in this case Tweets, people listen.  Via Twitter a person stated:  "I honestly don't know what I would do if I were pregnant with a kid with Down Syndrome. Real ethical dilemma". Dawkins replied: "Abort it. It would be immoral to bring it into the world if you have a choice". This exchange is typical of Tweets I have read. Short, pointed and devoid of context. I am not impressed. 

I am four days behind in writing about Dawkins' Tweet. This, I suspect, in the world of Twitter is akin to a century. Aside from the fact I am busy prepping for the new semester (my first class is tomorrow) I wanted to let Dawkins Tweet rattle around in my brain. I thus followed a multitude of news stories about Dawkins Tweet. Was it offensive? You bet it was. Was it poorly worded? Absolutely.  Dawkins should be taken to task and severely chastised. To Tweet it is "immoral to bring it into the world if you have a choice" undermines the humanity of people who are not typical--in this case those with Down Syndrome. Initially, I felt bad for Dawkins as he was inundated with hate email. I get my fair share of hate email and as the years have gone by become increasingly quick with the delete button. I do read a good bit of severely critical and hate laden email. I do this because I think such emails can reflect the larger cultural norms. There is no question my views on disability rights are not shared by the majority. I suggest Dawkins might want to adopt a similar strategy.  He posted what was, I think, supposed to be an apology. It was not, it was a an academic ego run amuck. Link: 

In "Abortion & Down Syndrome: An Apology for Letting Slip the Dogs of Twitterwar" Dawkins noted that: 

 a woman on Twitter, one of our respected regulars on, said she would be unsure what to do if she found a fetus she was carrying had Down Syndrome. I replied to her, beginning my reply with @ which – or so I thought (I’m told Twitter’s policy on this might recently have changed) – meant it would not go to all my million followers but only to the minority of people who follow both her and me. That was my intention. However, it doesn’t stop people who go out of their way to find such tweets, even if they don’t automatically pop up on their Twitter feeds. Many did so, and the whole affair blew up into the feeding frenzy 

Dawkins intension are not relevant. What one writes in an email or on Twitter is about as private as a post card. More to the point, I do not care about the intent of what Dawkins wrote.  He generated a feeding frenzy because what he wrote is deeply objectionable to many--myself included.  Worse, in his supposed apology he wrote that "given more than 140 characters he would gave written to the woman:" 

“Obviously the choice would be yours. For what it’s worth, my own choice would be to abort the Down fetus and, assuming you want a baby at all, try again. Given a free choice of having an early abortion or deliberately bringing a Down child into the world, I think the moral and sensible choice would be to abort. And, indeed, that is what the great majority of women, in America and especially in Europe, actually do.  I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare. I agree that that personal opinion is contentious and needs to be argued further, possibly to be withdrawn. In any case, you would probably be condemning yourself as a mother (or yourselves as a couple) to a lifetime of caring for an adult with the needs of a child. Your child would probably have a short life expectancy but, if she did outlive you, you would have the worry of who would care for her after you are gone. No wonder most people choose abortion when offered the choice. Having said that, the choice would be entirely yours and I would never dream of trying to impose my views on you or anyone else.”

The above is far worse than the original Tweet. Yes, most women when confronted with a choice do indeed choose to terminate the pregnancy when they  receive a positive test for Down Syndrome. What few discuss however is do women really have a choice when they elect to have prenatal testing done? When does choice, in this case a positve test for Down Syndrome, become a social expectation? When does choice become a demand or preconceived conclusion? Worse, Dawkins supposed apology highlights the stunning ignorance about what it is like to parent a child and adult who has Down Syndrome. People with a host of significant cognitive disabilities are not only deeply loved as a typical human beings are but make contributions in a myriad of non traditional ways. The same can be said of people with physical disabilities--people like me. The root cause of the discrimination those with a physical or cognitive disability experience are shared.  In a short essay I wrote in 2010 about the Ashley Treatment I argued that people with a disability: 

are the Other, a pervasive and important concept in the social sciences. The Other are strangers, outcasts if you will, people who do not belong. The Other often have fewer civil rights and experience gross violation of those rights.
Thus at a fundamental level there is an us-and-them – those with a disability and those without. This is a false dichotomy, but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important, nor is the type of disability. We people with a perceived disability are the other.
Given this, I do not consider myself one iota different from Ashley, in spite of the great difference in our cognitive ability. In developing the Ashley treatment,doctors have not only overreached the bounds of ethics in medicine but also sent a shot across the bow of every disabled person in American society.
The message is very clear: disabled people are not human – they are profoundly flawed beings, and extreme measures will be taken to transform their bodies. Consent is not necessary. Modern science has come to the rescue, and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley did not need to be saved. Link:

The fact is not only are people with a disability subjected to baseless prejudice, but the mere right to exist as a human being is being subjected to a frightening modern day form of Eugenics. I am sure this statement will outrage some bioethicists, physicians and health care providers. I would urge those shocked by words or deeply insulted  by my use of the word Eugenics to think more deeply.  Please stop and read the words by Dawkins. A mother who gives birth to a child with Down Syndrome is "condemned" to a lifetime of caring.  Read this repeatedly. Think about the implications and consider this. My parents were told when I was a morbidly sick child that the odds of me surviving to adulthood were slim. I would most likely have profound and life long physical deficits. I would require great care and that care would be a significant financial drain. But the choice to treat me was up to them. I could be made comfortable. They could try and have more children--children that would not be a burden. Has much changed in my life time? In a word, no. In 2010 I was critically ill and a hospitalist suggested my life was not worth living and that he/she could make me comfortable. In other words I could choose to die. After all life with a disability is filled with misery and pain. 

People do not make life and death decisions in a social vacuum. We are part of a much larger social system. Dawkins words merely supports existing ideology. That ideology works at multiple levels and that includes institutions like hospitals and health care offices. The normative ideology that Dawkins supports leads to the consent for oppression (in this case the termination for all fetus' that test positive for Down Syndrome). This in turn creates a belief system in which the termination of a any pregnancy in which a physical or cognitive disability is present is perceived to the only logical and moral choice. This has a a direct impact on individuals that leads to alienation of those few that are born or acquire a disability. The end result is that stigma, social isolation, economic deprivation, and a lack of social supports are the norm. People with a disability are marginalized others.  

Let me return to Dawkins. He ended his non apology with the following words: 

To conclude, what I was saying simply follows logically from the ordinary pro-choice stance that most us, I presume, espouse. My phraseology may have been tactlessly vulnerable to misunderstanding, but I can’t help feeling that at least half the problem lies in a wanton eagerness to misunderstand.

I do not possess a wanton eagerness to misunderstand. Rather I have a wanton eagerness to shed light on what others, typical others, do not get when life involves living with an atypical body. I want to make sense of the stigma I encounter daily. I want to make sense of why people feel free to consider my body to be public property. I want to know why people are not bothered when I am harassed by those who work for the mass transportation industry. I want to know why people with a disability are unemployed in great numbers. I want to know why social supports for those with profound cognitive deficits or mental illness are substandard at best. The answer to these questions is not to be found in preventing people with a disability from existing.  The answer is all around us. It is questioning why others, atypical others, face prejudice every time they leave their home. The prejudice I encounter as do all people with a disability is called ableism. This is a word I hope Dawkins will take the time to look up for his apology is really a simple statement in support of ableist ideology that I oppose day in and a day out.