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Thursday, March 31, 2016

Social Isolation in Academia

The AWP is back in the news. Forget the acronym. It does not matter. Replace the AWP with AAA, ASA, APA, ASBH etc. The point is virtually all academic societies and their annual meetings in cities across the nation present needless obstacle to inclusion. The AWP simply happens to be the latest organization in the news for its discriminatory practices toward scholars with a disability. Link: As a young scholar, I believed over time the exclusion of scholars with disabilities would fade away. During my career I have attended academic meetings year in and year out. I have given talks at prestigious universities. I have also given talks at conference hotels across the country. All academic organizations were forewarned a bad cripple was coming. Think of the Yellow Brick Road--ding dong the wicked witch is on her way. Obstacles abound despite the fact organizers know well in advance I use a wheelchair. Inaccessible speaking platforms, inaccessible podiums, inaccessible technology, inaccessible hotels, ramps grossly out of compliance and dangerous, inaccessible buildings, no handicapped parking, no access to mass transportation, inaccessible hotels, etc. You get the point. The repetitive  refrain has not changed: "I am so sorry. I was told the podium was accessible". I hear sorry often. Sorries abound. Yet change is illusive.

Over the past two decades I have tried hard to advance the rights of scholars who have a disability--any disability. Part of this effort was self centered. I advocate for myself. I have no choice but to do so. The vast majority of academic organizations ignore access and disability issues. I am repeatedly told "sorry but our organization is not responsible for access. Call the hotel, they will have all the information you need". Some organizations belittle scholars with a disability.  Last year the AWP rejected all panels proposed that had a disability based focus. This year the AWP belatedly and half heartedly created a disability caucus. This prompted Stephen Kuusisto to write:

The national conference of the Associated Writing Programs or AWP in the year 2016 failed to include any disability literature among its hundreds of literary panels and presentations. Imagine had they failed to include any gay, lesbian, bi-sexual, trans-sexual, queer, gender fluid presentations, or a single panel devoted to writing by people of color or women? The outcry would be considerable, but not so with disability—a matter I consider shocking, not because able bodied people can’t conceive of disablement as a profound and universal element of human life, but because, (and here I shall echo Marcuse) there is no truth in art that does not break the monopoly of established reality). Gay reality is crippled reality; black reality is crippled reality; feminist reality—you get the picture.
So why does the national conference of the creative writing programs in higher education “not” get disability as an artistic seed bed, and perhaps the most inclusive of all marginalized categories, insofar as nearly everyone will have a disability at some point in this life? Why indeed. The answer lies in a paternalistic view of physical difference, a 1970’s model of the disabled as outliers who probably cost lots of money to include at the university; who must have a “special” office to handle their requests for whatever moist and inconvenient things they need. The rest of us able bodied professors fairly shiver at the prospects. These people have breathing tubes, motorized scooters, talk funny, or don’t talk at all. They have colostomy bags and crutches and sometimes they have wigs. They bring “down” the youthful, peppy, yoga-centric, aerobically charged, glossy entitlement of diversity filtered through the optics of good looks and vitality. Why a couple of years ago at their conference in Seattle, they hosted a poet with a disability who said publicly she’s not interested in that identity—would prefer to be understood as a real poet.
You see how it works? Real literature is GQ and Vanity Fair; it’s happy; and we all know those disabled writers can’t be happy—why in fact, disability is so hard, most of us university sponsored, middle class creative writer types imagine if we’re ever going to be disabled, well, by God! we shall commit physician assisted suicide! Do I gild the lily? Am I stuffing the owl? Perhaps. But leaving disability out of the conference, and then, pretending to afford something like awareness by hastily creating a “disability caucus” where the disenfranchised crippled writers can meet, and maybe even express their concerns, well, this is a kind of Uncle Tom business. When I hear separatism I know it for what it is.
Separate. Always separate and special. This goes against the grain of cherished American ideals foremost among them the idea we are all born equal. While one and all know this is not true it is a myth we Americans cherish. Here we are 25 years post ADA and disability rights remains an unpopular notion. The law has utterly failed to resonate with the American public. There is no social demand for access. My little town in Central New York is lovely. Old churches and buildings have been loving restored and impeccably maintained. The town is picture post card perfect. This perfection ends if you use a wheelchair. Most stores on the main drag have a step to enter. I cannot enter most of the shops. A step, one step is preventing me from enjoying my town and giving my business to local shops. The ADA deems something like a single step readily accessible. Almost all the shops in town could easily be made accessible. All the academic conference I attend could easily be made accessible. There is a lack of will and knowledge to do so. You see special is okay provided it is not imposed. Even more important is that access be inexpensive because it is not valued. The ADA failure is not legal but rather social. One example will suffice. Ten years ago the Subway shop  in my town was sued because a step prevented wheelchair access. The case progressed at a glacial pace. About a year ago a settlement was reached. The step in the front would be replaced by a ramp. A ramp that would be welcomed by teens, college students, mother's with baby carriages, bikers, and many others. A ramp, however, might mar the architectural heritage of the town. The unwanted ramp is being imposed on the town by the Federal government and that damn ADA law. So what did Subway do? They made the bathroom accessible and did not ramp the entrance as agreed upon in the settlement with the DOJ. The ramp empowered those that did not want it to undermine the ADA. "The ADA is a joke! The government forced us (insert outraged local shop owner) to make an accessible bathroom in an inaccessible store". Ignored is the fact the Department of Justice required said ramp. A lack of will. A lack of desire. A lack of thought. In example of cultural ignorance. When I complain, when I point out the lack of access or, worse yet, assert my civil rights I am bitter. I am an angry man. Think Ralph Ellison. Think Jim Crow. Advocating for disability rights is a screed. I am the hopeless and wearisome narcissist. Yet it is never about me. It, meaning equal rights and a fully inclusive physical environment, is about the person with a disability coming after me long after I am gone. It is about screen readable software for the blind. It is about ASL for the deaf. It is a quiet room for some within the neurodiveristy community. It is about different means of communication for those who have are not verbal. It is about cutting edge technology for amputees. It is about the inclusion of those with profound physical and cognitive disabilities. It is about the elderly and those that age into disability. It is about those with chronic illness. It is about Ashley X and the bodily integrity of those who cannot advocate on they own behalf. It is about those in a minimally conscious state. It is about the largest disenfranchised group in this nation.
Let me provide an incentive and forewarning. We people with a disability abound. We are a distinct class of people. The law is solidly on our side. While I the poster boy for the universal wheelchair logo a disability may or may not be visible. Be careful. We are among you. And more to the point any human being can become one of us. Cripples are born and some are made by happenstance. Don't trip and break your head. Don't get old. Don't get sick. For if you do, and it will happen eventually if you live long enough, you will become one of my people. For me, there was a decade long decent into disability as a young man. The typical body I had is long gone. For others it can happen in the blink of an eye. I urge those without a disability to be narcissistic. Embrace my screed. Don't do it for me. Do it for yourself. Think of it as insurance. Disability is part of life and human evolution.

Sunday, March 27, 2016

Growth Attenuation: Its 2007 Again

It has been a week or so since the New York Times Magazine section published an article on growth attenuation. The essay by Genevieve Field, "Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth?" has been savaged by disability rights activists. Link: I get the anger and frustration expressed by my crippled brethren.  I am staunchly opposed to growth attenuation and have published essays against growth attenuation in a wide variety of academic and mainstream publications. My views have not changed much since 2007 when the news about Ashley X came to light. The response to the New York Times essay is very similar to what took place in 2007. Instead of Doug Diekema being attacked this time it is Field. I spoke to Field two years ago. I liked her. She wanted to get into the nuances, the details of what disability rights is about, and more specifically what was it like for care givers to provide physical and emotional support for those with severe disabilities. She seemed different to me. I have spoken to many mainstream journalists about growth attenuation and almost all of them already had an angle. Field struck me as different. Had I not trusted her our conversation would have been very short.

Over the last two years I assumed her story did not work out and she had moved on to another story. Then all of a sudden my Facebook account was flooded with messages. Over the weekend I weighed in on some long discussion threads. I thought the criticism she was subjected to was too harsh. I said as much and my peers in disability rights let me have it. It is not the criticism that I objected to but it was the harsh tone. Again, I get it. Field, to my knowledge, does not work within disability studies, disability rights or bioethics. Why did the New York Times select Field and not a scholar such as Eva Kittay who has written eloquently about growth attenuation and has daughter with a severe disability. This is an important question. I suppose my reaction is different in large part because the essay by Field did not bother me. Did I like it? No. Did it portray opposition to growth attenuation badly? Absolutely. My first thought was typical New York Times. The so called paper of record regularly screws up stories about disability. My expectations for the New York Times  when it comes to disability is very low. The paper, as many will recall, had Peter Singer write the obituary for Harriett Mcbride Johnson--the utilitarian philosopher who, all things considered, thought she should not be alive. I was just happy the essay was not written by someone who supported growth attenuation.

I was very angry in 2007 when I first learned about the Ashley X case. I expressed that anger in my first essay about growth attenuation in Counter Punch. Link: My anger got me nowhere. What I learned since growth attenuation first came to light is that anger in this case must be contained. In my estimation the parents that are willing to entertain the idea of growth attenuation are zealots. The physicians who are willing to perform growth attenuation are well meaning but narrow minded. They see just one thing: the patient in front of them. Ignored are the larger ethical implications. Ignored are the gross lack of social supports for parents who care for a child like Ashley. Oh, lip service is paid to the inequities that abound. Yet there is always the proverbial but. The but is social supports are currently absent. We are living in the here and now. The Hastings Center Report and the Seattle Working Group suggested if growth attenuation is going to be performed we should study it. Well, that is not happening either. The ethical discussion surrounding growth attenuation is a mess.

Back to Field. I sent her an email. She was taken aback at the criticism and recalled I told her I do not envy you. The reaction could be swift and nasty. I was right. I was right because my essays in opposition to growth attenuation always generates email. The email I get is not reasonable. It is nothing short of hate email. But something seemed off to me about Field's essay. It did not reflect our conversation. She struck me as balanced. The essay she wrote was not balanced. Short shrift was given to disability rights opposition and the larger cultural implications of growth attenuation. Worse, disability rights activists came across as zealots. A nod was given to the opposition in the form of Kittay's work and a link to one of her best essays was included in Field's essay. Something was off. It turns out that her original essay submitted was far too long. Indeed, it was twice as long as requested. Here the New York Times editorial board comes in. The editors mangled Field's long essay. Did Field make a very basic journalistic error? Apparently yes. I am not a journalist but I have submitted many an essay for academic publication that was far off in terms of words.

I am not here to defend Field. She is taking the heat and can take care of herself. My point is that reacting with hostility is counter productive. The severe criticism of Diekema was framed in a way that made disability rights opposition to growth attenuation look bad. Worse, Daniel Gunther's suicide in 2007 was falsely connected with growth attenuation. This was not the case. The man experienced clinical depression. I made mistakes too. My anger got the better of me in my first essay about growth attenuation linked above.  If there are zealots involved in growth attenuation it is not present within those who oppose growth attenuation. To me this remains the core issue. Ashley X parents enjoy and safe guard their anonymity while waging a public campaign to promote growth attenuation. They continue to operate pillow and do periodic interviews in various newspapers. They provide support for desperate parents who are considering growth attenuation. I assume they also provide recommendations for physicians who might provide this so called treatment. I find this deeply objectionable if not disingenuous. Are they concerned about their daughter as they maintain or are they growth attenuation advocates? Exactly who are the zealots here? The fact is growth attenuation remains a radical surgical intervention for a social problem. Less than 100 children have been subjected (mutilated) by growth attenuation. Virtually all parents who care for a child with a severe disability gets this. They move on with life. They provide love and support for their children. This is a new class of people created by advances in medical technology we don't want to think about. Our lack of thought results in a human rights violation--the lack of social supports for those most in need is woefully absent. Parents and the severely disabled people they care for struggle mightily. What do disability rights scholar and activists do? Not enough in my estimation.

Given the death of my mother last week, I am not only in mourning but retrospective. Today I read with chagrin my Counter Punch article. Anger was my mother's primal go to emotion. I do not share this trait though I do share many others. Since she died I have not had a drink. When bad things took place my parents took the bottle of scotch on the kitchen counter and put it in the cabinet. When things are bad they told me don't drink. A life lesson was learned. The point here is that controlled anger is good. Anger directed outward was used by Ed Roberts and he called it cripple power. So looking at what I have written about growth attenuation the essay I like the most appeared in Bioethics Forum and was titled "Ashley and Me". Below are the opening paragraphs. If interested you can read the rest of the essay in full. Link:   I stand by these words. I also seek a unified reasoned opposition to growth attenuation.

When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched. 
The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? 
There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal and the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation, but the end result was an illegal sterilization. 
State laws vary with regard to sterilization, and they are contentious and contradictory. Virginia, for instance, has the most protections, and extensive due process steps must be undertaken before a court may give permission for surgery on someone unable to give informed consent. What the state laws all hold in common is that the greatest controversies over sterilization pertain to people who, like Ashley, are unable to consent. 
I am not suggesting that sterilization of people with profound cognitive disabilities is wrong – in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process.” These are the words of Douglas Diekema, Ashley’s physician and the main proponent of the Ashley treatment. 
What ethics committees need to focus on are the facts, and foremost among them is that growth attenuation and the Ashley treatment involve sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history reveals the inherent dangers of overlooking the sordid experience of sterilization.