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Saturday, June 14, 2014

Walking is Over Rated

I never think about walking. Not in my dreams nor when I am awake. Walking has no relevance to my life. I do not miss walking one iota. In fact I think more about the way I push my wheelchair and use the gears on my handcycle. If people ask me about walking, and strangers often do, I emphatically state walking is over rated. This is a sure fire way to undermine any discussion of typical ambulation. When I shut down this discussion I also eliminate any reference to the myriad of ways in which the mainstream media glorifies walking. Here I refer to the silly, ineffective, impractical and expensive ways bipedal people dream of making paralyzed people walk again. Believe me when I state we paralyzed people do not think nor care about walking. It is a discussion and thought that does not enter our minds.  If you do not believe me I suggest you visit the website Walking is Over Rated. Link:  This is not the best website--great title but the content is spotty and dated. However it does get the point across--walking is over rated. 

In an effort to put bipedal people in their place I read with delight a post by Red Nicholson entitled "Why the Obsession with Walking?" Link: Nicholson correctly asserts the obsession bipedal have for getting paralyzed people walking has reached a fever pitch recently.  I watched and laughed when I saw the World Cup exhibition that had a paralyzed man strapped into an exoskeleton kick a soccer ball. This was anti climatic in the extreme and thankfully was quickly dismissed by the mainstream media. This came as a relief to me. The exoskeleton is the latest and most expensive useless means to get paralyzed people to walk again. When I read stories about the exoskeleton I cringe. Nicholson hits the nail on the head when he wrote: 

Believe me when I say this: my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation’s half-baked execution of an obsession with making the non-walkers walk again. Because the trouble with this narrative, if it wasn’t already obvious, is that the journalists who write these stories are unwittingly invalidating a unique way of life for millions of people around the globe who are really happy with their wheelchairs. The implicit message from the media seems to be, "Wheelchairs suck! Walk in this robot instead!

This is the image we are left with: 

Nicholson correctly notes the problem with such images and inventions such as the exoskeleton is that people who use a wheelchair do not dream or yearn to walk. We are too busy with our lives. Work, family, marriage, child rearing and friends occupy our time and thoughts. Worse, when we paralyzed people do not share or express an interest in the obsession with walking there can be a severe backlash.  We are thought to be bitter party poopers or delusional and perhaps mental ill. Surely everyone wants to walk! Sorry, but no. I do not want to walk. I do not miss walking. 

Nicholson concludes that he has: 

no more desire to be strapped to a robot than I do to go swimming with great white sharks. In truth my life as a wheelchair-user is a very good one. I do a lot of great things and know a lot of great people. So hey, able-bodied media: quit making me feel like wheelchairs are a shitty, sub-par option. Stop beating your exoskeleton drum. And most of all, let go of your obsession with walking, because it’s totally overrated. 

I would like to second Nicholson's observation and take the critique one step further (pun intended). The exoskeleton is inherently misleading and its benefit to paralyzed people has not been established. The exoskeleton is Department of Defense research detritus used by profiteers who sell the dream of walking to newly paralyzed people who cannot imagine life as a wheelchair user. As such the exoskeleton is symbolically and practically destructive to a newly paralyzed person. So I would urge paralyzed people to boycott this device! Screw the exoskeleton. Screw walking! Get me a good wheelchair, an excellent wheelchair cushion, and some adaptive sports equipment so one can remain in excellent physical health. Better yet, get paralyzed people a job. Forget about the exoskeleton. Take those funds, the millions of dollars of potential waste, and put a job placement office in every rehabilitation facility. Empower paralyzed people to do what we Americans love to do: work, make a decent living, and be autonomous. Own a home even. Have a family. Get married. In short, be ordinary. Walking is simply not required for all this nor should it be glorified. 

Friday, June 13, 2014

The Ashley Treatment Rears its Ugly Head

I was having a good day until I had an early lunch. As I ate I checked out links on Facebook and came across a link provided by David Carlson of Disability Rights Washington (DRW). Carlson, as those familiar with the Ashley X case will know, was a lawyer for the WPAS now DRW. He has been and remains involved in the legal implications of growth attenuation and the so called Ashley X Case.  He provided the following link to a deeply disturbing video from New Zealand:

I decided to provide the link rather than embed the video because I find it disturbing and objectionable. The video is New Zealand version of the Ashley X case. And as hard as it is to imagine the parents actions in New Zealand are even more ethically questionable. The New Zealand case concerns Charley Hooper, a child severely disabled as a result of an accident during a home birth. The mother who is featured prominently, Jen Hooper,  parrots much of what Ashley X's parents stated in 2007 and 2012.  Charley Cooper was given high dose estrogen to attenuate her growth at the age of four. To obtain the estrogen the family traveled to South Korea. No hospital in New Zealand would permit such a prescription.  The rhetoric spewed but Jen Hooper is offensive and does not differ substantially from what Ashley X parents have stated repeatedly. Hooper, like Ashley X parents rely on emotional arguments. Hooper insists she is not a monster and has gone public because she is concerned about the back lash from those opposed to the Ashley Treatment. Hooper's primary focus is on infantilizing her daughter Charley and insists there is no hope. Charley has the brain of a new born Jen Hooper states repeatedly. Charley's brain is static and will never change. Hooper insists Charley lacks any potential for intellectual growth or personal awareness.  Hooper also mimes transhumanists in maintaining that if her daughter has the brain of a new born her body should remain as child like as possible. She gushed her husband Mark "and I were like Oh my God, this is amazing if we could do this and always be able to carry her like the new born baby her brain will always be". Hooper has no reservations and stated "I'm damned proud of what we've done. I'm incredibly proud of what we've managed to achieve for our little girl".

As I sat and watched the 17 minute news program I was stunned. The news program has been actively covering the case for a while. A film crew accompanied the family to South Korea where after a 20 minute consultation with a physician the parent were given a prescription for high dose estrogen. If Jenn Hooper is to believed this took place when Charley was four years old.  The news program shows Hooper putting the first hormone patch on her daughter in what appears to be a mall. Apparently in New Zealand once hormone therapy has begun abroad it is legal to continue.  Charley Hooper has been cared for by endocrinologist Paul Hofman who stated "the use of high dose estrogen to make the child smaller has justification certainly in the context of this family as they wanted to be able to look after the child for longer".  Remarkably, last year at age seven Charley had a hysterectomy at Starship Hospital in Auckland, a procedure deemed reasonable by the Auckland Clinical Ethics Advisory Group. As I understand it, this was the same group that refused Hooper's request for the Ashley Treatment.

It will be interesting to see how this story plays out. The story is a month old. This is the first I have heard of it. A quick google search revealed no news stories outside of New Zealand have been published. I am sure this will change. I have no doubt Ashley X parent will have something to say. Perhaps Doug Diekema or Norm Fost will comment. While I am disturbed by this story, I think the general public will be able to see throughout the emotional manipulation and realize there is no factual basis for growth attenuation. Hooper, like Ashely X parents, are extremists. As zealots they do not question their actions.  Most parents I know regularly second guess their decisions. Indeed, the more important the decision the more angst and thought parents put into a decision that will have a profound impact on their child. The assuredness Hooper and Ashley X parents possess is well outside of the norm. In Hooper's case traveling with their entire family to South Korea with a camera crew is far from typical and from my perspective reeks of self promotion. Not many parents are convinced they are correct and the entire New Zealand medical community wrong.  To me this is ego run amuck.  It is my hope others will see this. I also hope viewers will grasp a more subtle issue: the medical community is all to willing to perform such ethically questionable treatment on those with severe cognitive and physical deficits. While skilled within the medical sciences, health car professionals in general have a very poor understanding of disability--especially severe disability that involves both physical and cognitive deficits.

All is not gloom and doom. I was thrilled to learn the Auckland Clinical Ethics Advisory Group refused the Hooper's request for the Ashley Treatment. They concluded:

We are not satisfied that the evidence for either he social or medical benefits of the proposed interventions are clear enough to out weigh the possible burdens to this child. There exists an individual right in these patients to be protected from undue risk. There are well developed ways to manage severely disabled people in New Zealand.

I applaud the Clinical Ethics Advisory Group but I wonder if they really get it. I also sincerely doubt there are well developed social supports for severely disabled people. But this not want  I want to be the take away message from this post. Disability in the broadest sense of the term is a social identity. That is the presence of a disabled person prompts a social response. For me, the reaction to my presence as a wheelchair user can lead to a wide range of responses--some positive others overwhelmingly negative. The point I am trying to make is that disability is a social state of being.  The more profound and obvious the disability the stronger the reaction is likely to be. Those without a disability will quickly wonder and question how can a person with a profound disability remain independent, self reliant and autonomous. These are mythic and valued American ideals. They also reflect a narrowness of thought and an utter lack of imagination when one has a different or atypical body. Autonomy as many know is fleeting. We enter the world utterly dependent on others and many will be dependent upon loved ones at the end of life. The lack of autonomy makes us no less human. Sadly those that are not autonomous and will never be autonomous, people like Charley Hooper and Ashley X, are deeply stigmatized. In fact utilitarian philosophers openly question if thresholds for humanity exist. If such thresholds are not met personhood is not achieved thereby rendering a person non human.  While this may be a rigorous and intellectually stimulating issue to grapple with I for one would prefer to spend my time advocsting for the rights of our most vulnerable citizens. And yes, Ashley X despite her cognitive limitations is very much a human being as is Charley Hooper.  I take this as a given and treat such individuals with the same respect I would like to be treated with. This for some is a radical idea. A thought that has led to many sleepless nights.

Sunday, June 8, 2014

Syracuse University SPAWN: Philosophy of Disability

I am upset. I expected to feel this way today. I am depressed. I also expected to feel this today. It is well out of the norm for me to go to a conference and expect to leave depressed. My angst is deeply rooted and practically based. The conference has been an access nightmare. Multiple scholars with a disability chose not to attend. The papers presented posted on line  were completely inaccessible to blind scholars. CART and interpreter services were addressed late in the game and inadequately. Deaf scholars chose not to attend. In fact no one from the Syracuse disability studies department is present or has made an appearance. Wheelchair access has left much to be desired. The conference hotel accessible shuttle bus wheelchair lift was broken. I learned the lift has been broken for the last three and half months. Sadly I am not surprised. Lunch yesterday was essentially inaccessible because the tables and aisles to the buffet were too narrow. I was hence put in a position of dependency, my autonomy needlessly subverted. 

It would be easy to take the organizers to task for the lack of reasonable accommodations. The simple fact is they did the best they could. I went out of my way to help them as did others on campus. I tried to explain what was involved in making a conference accessible to all scholars. In this regard they failed as did I. Unlike the inaccessible conference on health care and disability at William Hobart Smith I wrote about last fall, the organizers are not to blame. The required knowledge to hold an accessible three day conference cannot be learned in months. I have no interest in playing the blame game as it would be all too easy to blame Syracuse University as an institution. This sort of blame would be misplaced. 

The noted scholar Lenny Davis started yesterday by talking about the lack of access at the conference. Davis also wrote the following to Chancelor Syverud and Provost Spina: 

I will be attending the SPAWN conference at Syracuse this weekend.  However, there are those who will not be attending.  This annual conference chose as its theme Disability and Philosophy--a welcome addition to what seems to be a very significant conference.
The reason distinguished scholars are not attending is that a series of issues concerning accommodations for disabled participants arose.  I want to state at the outset that the conference organizers are hardly to blame.  Everyone who has organized conferences in general and particularly those involving disabled participants knows that there are many complex issues to deal with.  One cannot expect organizers with little or no experience in this area to get things right.
In this case, the conference organizers are on a steep learning curve.  They clearly regret the frustration caused to potential participants. What they, and your university, need is a full-time ADA coordinator who is knowledgable and can help anyone organizing a conference or dealing with any aspect of university life comply with the ADA.
It should be no surprise to you that the ADA has been the law of the land for almost 25 years.  Yet compliance with its provisions has been spotty.  I would have thought that Syracuse U of all places would have already moved toward full compliance (if only to avoid law suits under the ADA).  Syracuse, which houses one of the nations most distinguished disability studies PhD programs should be a model for ADA compliance not an example, in this case, of problematic behavior.

Based on my experiences over the last year, I would suggest Syracuse is culturally welcoming to all people with a disability. Syracuse fails in making the campus and too many events inaccessible. Part of this is geography and a historic campus. Many buildings are quite old and the campus is hilly in the extreme. It is not an easy campus to navigate. I can happily live this. Architecture can be changed. Lifts can be purchased. The cultural milieu is far more difficult to change and the culture at Syracuse does not need changing. At issue is a well known flaw Davis identified: Syracuse has no ADA co-ordinator. There is no person for event organizers to seek out to insure access for people with disabilities is met. Faculty have been advocating for an ADA co-ordinator for years. Until an ADA coordinator is hired multiple events will remain grossly inaccessible. 

I should be a happy camper as there are many scholars present whose work I admire; Eva Kittay, Lenny Davis, Anita Silvers, Licia Carlson and others. Happy I am not. All day yesterday I thought of the slogan “nothing about us without us”. None of the presenters are advocates. Most are philosophers by training. I thought I lived in a world ideas until I sat through yesterday’s presentations. Simon Hayhoe spoke as did Simo Vehmas and Ben Curtis. In the afternoon Teresa Blankmeyer Burke and Anita Silvers spoke and tried to generate a group discussion. A number of things struck me. After Hayhoe spoke there was much discussion of John Locke theory of mind, identity and blindness. No blind scholar was present. Vehmas and Curtis spoke about the moral status of those that live with a profound cognitive and physical disability. They created an acronym, PIMD (profound intellectual and multiple disabilities). I read their paper and was turned off by the tone. They assumed an expertise I doubted they possessed. I do not question the intellectual rigor but rather I sincerely doubted they spent any time with people with severe disabilities. At lunch, I confirmed this to be correct. They produced a paper about people with severe disabilities yet have spent no time, as in none, with such individuals. 

This afternoon I get to introduce Eva Kittay who will give the key note address. I am looking forward to this as I respect Kittay’s scholarship. Her book Love’s Labor was among the first books I read that touched upon ethics and the philosophy of disability that struck a chord with me.  I also think her work on the Ashley X case is spot on. The so called Ashely Treatment targets a classically and historically disenfranchised population and violates their right to bodily integrity. This is a gross human rights violation Kittay not an inventive solution to an old dilemma. Indeed, the Ashely Treatment or what is now referred to as growth attenuation is morally objectionable. Kittay does not mince words here. She is blunt—appropriately so. 

If it were not for my commitment to introduce Kittay and the fact Dominic Wilkinson will present a paper tomorrow I would leave for home. I am an intellectual. I work in academia. I love to write theory. I can hold my own and make a contribution at pretty much any academic conference. But this conference is not for me. There is no grounding in reality. I simply do not get how one can write a paper about severe disability having never met or interacted with any people with disabilities. I am equally uncomfortable with the lack of access and the fact no one seems to care. Aside from Lenny Davis and myself, no one seems perturbed a conference focused on philosophy and disability is not accessible. Sure I can get in the door. Yes, I can navigate my way around with difficulty. But I have spent the last 30+ years advocating for myself and others with a disability. I know how to get my foot in the door. I know how to manipulate people. I do this daily and at most conferences I attend. But to be forced to do this reinforces a criticism I receive from others with a disability—I have a privileged body. Physically the barriers I have encountered are minimal. This does not mean such barriers are acceptable. In fact I object to much of what has taken place.  

I spent most of yesterday biting my tongue. I understand this is a conference on the philosophy of disability. But does not all philosophy of disability need to be tied to reality at some point? Apparently not. This is a sort of philosophy of philosophy. Disability is not central or even important but rather an analytical tool to abstraction and academic discourse. Toward the end of the day I lost it. I promised myself to remain silent but failed. What I wanted to see addressed, or merely acknowledged, is the paucity of scholars with a disability. The barriers disabled people encounter in higher education are staggering. When 2/3 of all people with a disability live at or below the poverty line education is a pipe dream. Add in the fact academia in general is hostile to the inclusion of disabled scholars and the field of disability studies itself is not respected in the academy is there any wonder scholars with a disability are a rarity? To me, we need to expose this anti disability bias. But no. That is not the sort of gritty discussion people want to engage in. After two or three comments I was essentially reduced to being “Debbie Downer” in the back of the room. I was and will remain the cranky guy. I suppose the moniker Bad Cripple fits me.