Disability as the Great Unknown

The level of ignorance associated with disability in general and disability rights shocks me. I was shocked 35 years ago. I remain shocked today, 23 years after the ADA supposedly made me equal to other American citizens. This thought came to me early this morning when I was thinking about food. Going back and forth to Syracuse has forced me to be creative in terms of food. Regardless, I read with great amusement an article in the Houston Culture Map. Apparently there is a critically acclaimed restaurant in Houston--Oxheart. Like other restaurants known nationally, it is very hard to get a reservation at Oxheart. The restaurant has suddenly generated headlines for the wrong reasons. Apparently Oxheart is not wheelchair accessible. This fact was not made clear to one visitor who could not enter the restaurant and was allegedly forced to pay a $200 plus cancellation fee. Based on what I have read, I am not at all clear if the restaurant is or is not accessible. I do know the bathroom is not accessible--hardly a shock to others that use a wheelchair.

I am not particularly interested in Oxheart. I am interested in the way the lack of access has been framed in newspapers and the Houston media. In "Top Houston Restaurant Embroiled in Wheelchair Access Controversy: Chef Disputes Houston Mag's Account" Eric Sandler is taken aback the restaurant has failed to comply with the ADA. The lack of wheelchair access was first raised by Houstonia Magazine feature editor Katherine Shilcutt. As near as I can determine Shilcutt wanted to dine with five other people, one person was a "wheelchair bound professor"(it was not me). Upon arrival, the "wheelchair bound" man was told he could not be accommodated. Worse, the restaurant did not care nor did they apologize to the party of five. The restaurant also initially refused to waive the hefty cancellation charge. Shilcutt was furious and followed up on being refused service. I had to laugh at the privilege Shilcutt enjoys and her utter lack of knowledge regarding wheelchair access in restaurants when I read the following:

You might wonder how a restaurant—or any other public facility, for that matter—could get away with not having handicapped access, especially in this day and age. Yu claimed that because Oxheart was housed in a historic building, it was exempt from such regulations, having been “grandfathered in,” as he put it. That’s a load of offal, said Aaron McCullough, an attorney and former social worker who specializes in lawsuits and other issues involving the 1990 Americans with Disabilities Act. “The ADA doesn’t opt out anything from compliance. There ain’t no such thing as a ‘grandfather clause.’” It’s a common misconception, however, and McCullough still encounters the odd eatery that isn’t ADA compliant.- See more at: http://www.houstoniamag.com/eat-and-drink/articles/standing-room-only-october-2013#sthash.pU3iZVwq.dpuf

Shilcutt did get to the heart of the issue when she followed up with the chef/owner who stated:

retrofitting his tiny restaurant according to ADA standards would be cost-prohibitive. Besides, he said, incidents like the ones my friends and I experienced are rare. “Generally what we do is let them know what kind of accommodations we do have.” Those accommodations include a portable ramp (which wasn’t available on our Sunday evening visit, although both parties agree that the professor mentioned his handicapped status when his reservation was made.) A handicap-accessible restroom is not one of the accommodations. Yu had no suggestion as to what wheelchair-bound customers should do if they needed to use the facilities during one of Oxheart’s marathon tasting menu dinners.

The owner/chef Justin Vu is ever so sorry. It was a "breakdown in communication". And how is it just because the "problem" arises rarely it is somehow okay? I must confess I found it sadly humorous that restaurant reviewers are so oblivious to wheelchair access. After 35 years of paralysis I have learned a few things. For instance, I do not gracefully accept an apology. I want to know one thing when the ADA is violated: how and exactly when will the so called problem be solved. I refuse to be bribed as well. No free hotel room or meals for this cripple. I do not complain for myself. Instead I want access for the next person that comes along.  I have also learned I am screwed when a person starts to tell me all about how communication breakdowns are the the reason why a hotel room is not accessible or why a rental car with hand controls cannot be found. In the restaurant business, I have long observed the existence of the cripple table. This is invariably the worst table in the dining room. Out of sight, near a heating or air conditioning duct or in some way the least desirable place to eat. Space is also an issue: I wish I had a dime for every time a  server bumped into my wheelchair. As for a bathroom, aside from big box chain restaurants this is a pipe dream. Even if a bathroom exists getting to it is an adventure--an adventure that involves many sorry's and having a multitude of diners awkwardly move or get out of their seats not once but twice.

The reason restaurants are routinely inaccessible is money. Every inch of a restaurant is designed with money in mind. More tables equal more revenue. The larger the dining room the more revenue it will produce. Hence small kitchens and small bathrooms are the norm. The result is I routinely dehydrate my body if I am going to go out to eat. I choose not to drink beer with my meals. Unlike those that are bipedal when a person with a disability goes out to eat lots of mental gymnastic takes place. Hence this image comes to mind is when I think about eating out:

Autism as Spectacle: Art Caplan Misses the Point

In the Journal of Voice physicians wrote about cutting the vocal cords of a 14 year boy with autism spectrum disorders and Tourettes Syndrome. See: http://www.ncbi.nlm.nih.gov/pubmed/?term=vocal%20surgery%20autism The boy apparently had nearly 200 vocalizations per day at approximately 90 dB. The physicians noted behavioral and antipsychotic medical interventions had all failed. The authors concluded: “this case demonstrates that laryngeal framework surgery may improve the quality of life in patients with severe and intractable phonic tics, with or without morbidity of autistic self-stimulatory behaviors... Long-term follow-up of this patient’s voice and behavioral development as well as his laryngeal growth is warranted”. 

As one would expect, people with Autism were not pleased. Indeed, most people with Autism were appalled by this surgical intervention. A quick google search of Autistic related blogs and comments on news articles clearly demonstrate outrage. I get this anger. When I read about what was done to the boy with autism I was instantly reminded of my visceral reaction to the Ashley Treatment in 2007. I was not alone as  Ari Ne’eman, founder of ASAN was quoted in Salon that the: “The Autistic Self Advocacy Network views this surgery as profoundly unethical and bluntly are concerned that the UW Hospital approved it.  Autistic people and others with communication related disabilities often use what’s termed as ‘problem behavior” as a way of communicating distress, anger, fear, anxiety or other important emotions that may not be easily communicated for someone without standard speech. There is a long history of family members and providers viewing these behaviors as strictly a medical phenomenon and not recognizing they’re important for communication. To violate a person’s bodily autonomy and damage their ability to communicate to serve the convenience of caregivers is nothing short of horrific.  We view this as similar to the Ashley X Case or the long history of involuntary sterilization, teeth removal, and other inappropriate and unethical medical procedures conducted against people with developmental disabilities”. 

The mainstream press has speculated about the ethics involved in this surgical intervention. In Salon, Mary E. Williams wondered whether this surgery was cruel or kind? (http://www.salon.com/2013/09/27/is_surgically_altering_an_autistic_boys_voice_cruel_or_kind/) Art Caplan, the go to bioethicist for every news outlet in the country supported the surgery in a recent op-ed. See: . http://www.nbcnews.com/health/opinion-surgery-stop-autistic-boys-screams-was-right-decision-8C11296293

Caplan believed the analogy to the Ashley Treatment and growth attenuation was misleading. Caplan stated that growth attenuation could not be reversed and was permanent. For this reason, among others, he weighed in against growth attenuation. In contrast, he supported cutting the vocal cords of the boy in question because it was reversible. Predictably, the mainstream press took Caplan’s words to be the gospel truth. This is a real problem. Caplan is a distinguished scholar. I have seen the man in action and there is no question he has charisma. When Caplan enters a room everyone knows it. Stephen Kuusisto recently remarked that Caplan’s “never seen a spectacle he can’t reflect”. See: http://www.planet-of-the-blind.com/2013/10/art-caplan-and-nbc-news-fail-at-understanding-autism.html 

Kuusisto points out Caplan works within the medical model of disability and uses utilitarian logic. The “easy” solution, the convenient solution for care givers, is a surgical fix. Excluded from the discussion are people with autism in particular and more generally a disability studies or disability rights perspective. Caplan is the authority or seer the media seeks. He has mastered the sound bite and will comment on virtually any spectacle. The down side to this, and it is significant, is that virtually every news story I read referenced Caplan. It was widely reported the boy screamed non stop and was as loud as a lawn mower or motorcycle. Also reported was the fact that six months post surgery there is a 90% reduction in tic frequency and 50% reduction in intensity. The physician that performed the surgery is quoted as stating “the story is extremely easy to misunderstand”. The press clearly awards the physician great authority and points out that his own son was recently diagnosed with autism. Heavily implied, assumed really, is that Caplan and the physician that performed the surgery, are unbiased experts that know best. I think not.  

Of central importance is what is not known and the cultural penchant to avoid suffering at any cost--especially when disability enters the equation. Do I want people to suffer? Of course not. But exactly what is suffering? Was this boy and his family suffering?  Pulling a page from the Ashley X handbook the physician states: “this is about a very particular problem with a particular solution. It has to do with human suffering and being creative about it. What would have been barbaric would have been to ignore it and say Sorry, see you later... It would have been unethical to let him suffer”. The boys perceived suffering was not ignored. All options had supposedly been tried. Behavioral strategies did not work. Medications did not work. Botox on the larynx did not work. It appears there were no options--or that is what we are led to believe. There is a real effort to soft pedal the extreme surgical intervention. The physician noted: “What we wanted to do was preserve as much native function as possible, maintain the natural progression of his voice box, and achieve the goal of reducing the frequency and loudness. This is a reversible operation. It’s something you can do and undo. You’re making someone a little more breathy and less powerful”.

I am skeptical. It is ethically acceptable to perform surgery on a child with autism to eliminate his ability to scream loudly. This surgical intervention is ethical because we are told all other avenues were explored and failed. Better yet, the surgery is reversible. We are assured this is a unique case with a unique solution. For those pesky critics, especially people with Autism that  are outraged,  the surgery did not silence the child but rather merely made him more “breathy”. A “best effort” was made to preserve “native function”. Given these parameters Art Caplan speculates that “for this particular teenager, and this particular family it was the right choice to make”. Caplan notes the case has generated a lot of controversy within the Autistic community though he fails to mention any individual or organization. Caplan also notes the publicity about the case in question has created “a lot of grief from some other families who have autistic children”. In stating this Caplan has made a boogey man of any person that dares to question the surgical intervention. This is the exact same tactic Ashley X’s parents used to justify the bundle of procedures they dubbed the Ashley Treatment. Breast buds were removed instead of characterizing the surgery as a double mastectomy. Ashley X parents decried the “violent” response of the disability community. Many other parallels exist but this should suffice. Caplan concludes his article:

It is tempting, especially given the abuse of people with cognitive disabilities and mental illnesses by some in medicine over the much of the 20th century, to feel outrage at the idea of forcing surgery on an otherwise healthy young boy. But 21st century medicine gave Kade and his family a solution that has already allowed the boy to live a richer life -- and the solution can be reversed at any time. That seems to me to be cause for celebration, not condemnation.

Unlike Caplan, I am not in a mood to celebrate. This surgical solution did not take place in a social vacuum. An article was published in a peer reviewed journal. It garnered a significant amount of press. The surgery was performed at the University of Wisconsin, a widely respected institution. The physician and parents have been quoted in various mainstream news outlets. I assume they have done interviews in person or on the phone. In my estimation there is an effort to mislead people. Again this harkens back to Ashley X’s parents. Six years after the court declared they illegally sterilized their daughter the parents remain anonymous and continue to give interviews in the press. So please spare me the rhetoric that this case is about one teenage boy with autism. This is a case of parental child conflict of interest. Like Ashley X, the parents sought a surgical solution to make the care for their child easier, less problematic. This line of reasoning is framed in a way to highlight the child’s difference and focus on his or her perceived suffering. Rather than assume competence the parents and physicians assumed incompetence. They did not think about what was possible. Instead they saw pathology. At no point does Caplan or a news story ask what did this teenager in think? Did he have any say? Was he, to the best of his ability, a part of the decision making process? Was a hospital ethics committee meeting convened to discuss the case? If so, what were the findings? Did the parents seek out suggestions from the autism community or other parents who had children with similar issues? Perhaps Caplan will address these issues. Better yet, perhaps he could refer the press to experts in the field of autism so a serious and sober discussion can take place. 

At a fundamental level the teenager in question is perceived to be different. He was deemed so different that he did not have the same civil rights as other typical teenagers. Some may perceive this as an extreme view. I think not. Would a parent of a typical child ever consider cutting the vocal cords of their child? Not a chance. This is not a question of what was or was not medically appropriate. This is a question of civil rights--more specifically a class of people being denied their civil rights. Typical people rule and those with different bodies must conform to societal standards. This is a classic case of individualizing disability. The refrain is old, worn and sadly familiar. We are talking about one teenager with Autism. This is identical to we are talking about one girl named Ashley X in Washington. Sorry but no. We are talking about all people with autism, all people with a disability, all people who have an atypical body. We are talking about people who are a class apart and subject to medical treatments that would not be considered if they were “normal”. In my book that makes the atypical less--that is denied their personhood. This is wrong. Caplan should know better. 

Assisted Suicide: On the Defensive Thanks to Privileged People with a Disability

Last week, Stephen Hawking supported assisted suicide. This week Donald Low supported assisted suicide a few days before he died.  Low was a Toronto based microbiologist and infectious disease specialist who rose to international prominence in 2003 with the SARS outbreak. Low was diagnosed with a brain tumor earlier this year. The National Post, Globe and Mail and every major Canadian newspaper has published obituaries and on line one can watch a short video Low made before he died. The video is sad and undoubtedly will have an emotional impact on those who view it. The impact is designed to do one thing: garner support for assisted suicide legislation in Canada. I think Low's video is quite effective. In fact it is more effective than the video of Hawking. Hawking and Low have proved two powerful intellectuals can be wrong.  I regret these videos will likely be seen by many Canadians. This is not the finest hour for either man. Instead of relying on their great intellectual ability, Hawking and Low provide emotional not logical support for assisted suicide. Thus I find the following statement by Low misleading and unfortunate: "To those who oppose physician-assisted suicide I wish they could live in my body for for 24 hours and I think they would change that opinion". Sorry but this does not resonate for me as I have lived my entire adult life as a paralyzed man.

Hawking and Low strike me as oblivious to the typical experience of people with a disability. Typical meaning a life that is not respected or valued. A life dominated by unemployment, social isolation and economic deprivation. In sharp contrast,  Hawking and Low command instant respect. They are Ivory Tower scholars. Their intellects are powerful as is their prestige. No one will question the value of their lives. As such, they represent the tiny fraction of people with a disability that have attained great respect and the privilege that comes with it. I sincerely doubt if Hawking or Low put any thought into the rights of people with a disability. Hawking has never expressed any interest in people with a disability. Low was consumed with his own impending death and to my knowledge knew nothing about disability.

Low is of interest to me because he is the archetype for assisted suicide. Indeed, he could be the poster boy for advocates of assisted suicide legislation.  He is a distinguished scholar who mere days before he died wanted to make a death bed statement. Such words carry great weight given his prominence. In addition, no one wants a person to suffer as they approach death. Low is beyond criticism--to critique his words is impolite. Low's statement reflects what has been taking place in Canada for the last year (especially in Quebec). A growing tide of support  that favors some form of death with dignity law.  In fact one could argue the passage of a death with dignity law in Canada appears to be inevitable. Arguments against assisted suicide legislation are dismissed on two grounds: first, legislation will include multiple safe guards and be made available to only those with a terminal condition who are competent. Second, the opposition to assisted suicide is generalized and does not amount to much more than a set of refrains that have not been proven.

What proponents of assisted suicide legislation like to overlook are the reasons why people want to end their life. Low stated he did not want to suffer. This is misleading. His pain could be controlled--this is the norm at the end of life. Low wanted to die because he had lost control over his life. Likely a first for a man like Low. Low was also afraid. He was afraid his death would be a "protracted process" and that he would lose control over "normal bodily functions". This is not very convincing and accurately represents the so called "refrain" from those opposed to assisted suicide: the elderly, terminally ill and disabled. Low believes the loss of control and bodily functions is a good enough reason to die. I listened to Low's words an think he devalued the existence of scores of people: the elderly, terminally ill, and disabled. If I followed Low's line of reasoning one could argue I had the right to die. I have lost a degree of control over my life because I am paralyzed. I have tenuous control of my bodily functions. Yet here I sit in Syracuse with a football game on the television as background noise and think my life is great. Low, like Hawking, has utterly failed to adapt. Two brilliant men lack any vision. They have failed to imagine what life could be and instead focused on death and suffering. This is deemed news worthy. So here I sit and shake my head in wonder. In Washington DC ADAPT is undertaking a number of protests. ADAPT is dominated by people with a disability who have an imagination and vision but lack adequate social supports. These people are the norm. They do not have a position at prestigious universities. They do not think about theoretical physics or infectious control systems. All people active in ADAPT want to do is live a good life. A life that includes a disability and to live social supports are required. It is in the best interests of all people that such social support exists.  Sadly, ADAPT will be ignored. I doubt the protests will even merit filler space in newspapers. In its place much time will be spent discussing how to die and under what circumstances death is preferable to life. When I see videos made by Hawking and Low I think back to 2010 when I was critically ill. I was isolated and truly miserable despite the great efforts of my family to provide support. It was a real low point in my life. I am in an opposite place now. I am happy--tremendously happy to be alive and productive. I am producing first rate scholarship and have many avenues to research to explore. To do this requires some imagination, effort and the ability to look at what is possible. This seems to involve a lot more than a so called "refrain".

Memories

My good friend and colleague Stephen Kuusisto wrote a post at his always thought provoking blog Planet of the Blind today titled The Scary Milk Man. http://kuusisto.typepad.com/planet_of_the_blind/  My first thought when I read his post was when did I get old. There are no more milk men. Yes, I am old. I vividly recall the milk man came to our house at least twice a week.  We even had a milk box outside our back door. The milk man drove a white truck and wore a short white coat. The milk came in glass bottles. I grew up drinking whole milk--none of the low fat stuff I see on super market shelves that passes for milk. The milk man sticks out in my mind for two reasons: first, our neighbor's dog loved to piss on the milk box. My parents would get so mad! Second, whole milk in bottles back then had a layer of fat on the top. I would ceaselessly argue with my sibling about who got the first pour from a bottle. As the youngest I think I always lost this battle. I recall being so mad a glob of milk fat was floating in my bowl of cereal.

Unlike me, Kuusisto's memories of the milk man are not so warm or Norman Rockwell like. Kuusisto writes that he was afraid of the  milk man. He feared the milk man was a physician. I get this. Imagine yourself a young boy with little vision. A white apparition is at the door ready to take you away. I get this in part because my life changed on a Sunday morning when I was 9 years old. I was a typical kid until that fateful day. All I recall is pain, gut wrenching pain. Thunderbolts of lightening hot pain shot up and down my legs like the most violent electrical storm one could imagine. Think searing pain. Red hot lava running up and down your legs at warp speed. Each step I took was agony. I was a drive little kid though. I wanted to watch Go Speed Racer Go before church. I made it to the bottom of the steps. By the time I got that far I could no longer feel my legs or stand. All I could feel was pain. The sort of pain that makes one think death is preferable. I screamed out in agony for my folks. It was a blood curdling wail. I must have scared them to death. I cannot imagine what they thought. The idea I yelled out in such pain makes me shiver--as a parent I can think of nothing worse than see your child in pain. It was on this mundane long ago Sunday my life radically changed. The next ten years would be filled with hospitalizations that would last for months on end. Multiple surgeries followed. Medical stability came in the form of paralysis ten years later--just before I was about head off to college.

Memory, especially my childhood memories, are a strange collage of disjointed events. My memories are dominated by various hospitalizations. I vividly recall the good and bad of growing up with other morbidly sick children. Frankly, I am amazed I survived intact. For this, I have my parents, Arnold Gold, my pediatric neurologist,  and the dedicated nurses and therapists to thank.  While I suffered, and I mean I truly physically suffered, I was not damaged by the experience. Of course I recall the pain but at the same time I recall life changing events. For example, when I was 10 years old I recall looking out the window of Babies 11 in the Washington Heights area where the sickest of the sick kids were placed on a ward of 16. The big window in the center of the ward over looked the San Juan theater on Broadway. I remember in the winter watching poor homeless men walking in the theater desperate to get warm. I knew all I had assumed about life was wrong. Poor people existed. People lived on the street. Some of my peers on the ward told me about their dysfunctional lives. Some told me their parents had beat them. I met inner city back kids that had been shot. I felt their anger. It was a shock. I understood bias for the first time.  I saw kids, very sick kids who would not celebrate their 18th birthday, abandoned by their parents. In looking back I would not trade what I experienced for all the money in the world. I was fundamentally changed for the better. I am who I am because of what I endured.

I have been thinking a lot about my experiences because I have been working on a long range project. For the last several months I have been tracking down the family members of the people Jack Kevorkian killed. Kevorkian has an unknown but impressive body count--about 130 people. I use the term body count in deference to Stephen Drake and Diane Coleman, founders of Not Dead Yet.  I also prefer the term body count to victim or killed as it indicates Kevorkian became a cultural icon in the 1990s. The research I am doing is depressing. Kevorkian preyed on the weak and disenfranchised. Many people Kevorkian killed were women. Most of the people listed on Kevorkian's body count were  not terminally ill. What I have found is the myriad of ways life can go wrong. This makes me wonder. Why did I not buckle from a decade of hospitalizations? How did my parents cope? How did they make me feel good about myself and at the same time care for my siblings? Why am I relatively free of psychological trauma? I think about this at night. Why did I live and others die?

The mind is a mysterious thing. I wrote I am relatively free of psychological trauma. One exception exists. If I am in an elevator and I see a button SB lit up I break out in a cold sweat and my heart races. The response is primal, a sensation I have absolutely no control over. This is deeply disturbing as a rush of terrible memories lights up in my brain--the sort of memories too terrible to detail, the darkest of places I wish I could forget. As a boy I learned if I was being transported to the SB level of the neurological institute I was in for misery. SB was akin to death and hell on earth. I was a brave kid. I sucked up the idea of suffering in silence. I was a good Catholic boy. I thought of Christ on the crucifix who suffered and died for our sins. I embraced American rugged individualism. I would be strong and silent. I reasoned I was tough. I wanted my parents to be proud of me. I could take it and more to the point what good would crying do?  No one wants to be around a teary eyed kid. Maybe I reasoned if I took the pain in silence the painful test I had to endure would end quicker. I may have been a child but considered myself to be manly. The worse the pain felt the more silent and stoic I became.

Survival comes at a cost. For Kuusisto, he fears the milk man. I fear the SB button. We crippled people endure. Some of us swagger. Kuusisto swaggers as a poet. I swagger too. Apparently I am swaggering as a bioethicist these days for when I am introduced as a bioethicist I cringe. My identity is wrapped up in anthropology and disability based scholarship and activism. I am proud to be an anthropologist. I am not proud of bioethics. Bioethics has a checkered history, a disgraceful history if one considers what has been done in the best interests of the crippled. I do not want to be associated with scholars such as Peter Singer and Julian Savulescu who are the first many think of when the field of bioethics is mentioned. Yet here I am teaching bioethics and disability theory to honors students at Syracuse University. And truth be told I am loving every second of my teaching experience. So I wonder am I making a difference? Am I undermining the many wrong preconceived notions about disability? Can I, as flawed as any other scholar, make a difference? Will I be able to teach my student how to swagger and be empowered? Will my scholarship sway others? Can I undermine the utilitarianism of Peter Singer? Can I prevent a man like Jack Kevorkian from amassing a body count of disenfranchised people with a disability? Sorry, I know I am rambling.  Kuusisto's post today has my brain firing on all cylinders.

A Little Saturday Morning Levity

I was up well before light today. In fact I was done with my tea and had cleaned the kitchen before there was any semblance of light. I would like to point out for those who are not morning people that I am a polite morning person. I am quiet as a church mouse. I regale in my alone time and every good idea I have ever had has popped into my brain before 8AM.

I tend to be a serious person. In fact my son thinks I am without humor--a Data like being.  If you do not know who Data is look up the TV series Star Trek. So in an effort to be funny I suggest you watch the following spoof. It reminded me of the dreadful articles the NY Post published about fake service dogs.

Stephen Hawking on Assisted Suicide

A documentary is going to be released about the life of Stephen Hawking. In an interview that  I assume was designed to spark interest and publicity Hawking lends his support to assisted suicide. A brief clip of Hawking is being widely discussed on-line and in the media. Hawking is without question a cultural icon. He has appeared on Star Trek and the Simpsons. He wrote an international best seller, A Brief History of Time, and is often referred to as one of the smartest people in the world.  I will freely admit I do not understand what he writes about. Black holes and the cosmos are well beyond my interests and ability. I tried to read A Brief History of Time. I never got past page 25. 

I have paid close attention to what Hawking has to say about disability.  In this regard, Hawking has little to offer. I find his social commentary about disability or anything else for that matter within the realm of the social sciences decidedly unimpressive. In the brief clip available Hawking supports the "right to die" but only if the person involved is part of the decision making process. Here is the quote the media will undoubtedly focus on: 

"I think those who have a terminal illness and are in great pain should have the right to choose to end their lives, and those who help them should be free from prosecution... There must be safeguards that the person concerned genuinely wants to end their life and are not being pressurized into it or have it done without their knowledge and consent as would have been the case with me."

The reference to "the case with me" refers to when he had pneumonia in 1985. He was put on a vent and recalls his wife could have turned off the "life support machine". It is pronouncements such as these that make me wonder just how much thought if any he has given to the social circumstances of people with a disability. Hawking is obviously a historic figure in theoretical physics. He is also the most widely recognized man in the world with a serious disability. As such, his words carry great weight. Sadly, his observations about disability and assisted suicide are in my estimation the words of a very privileged man who has led a privileged life.  For decades he has lived the life of a greatly admired intellectual. His concerns and life are limited to the cosmos. Thus when he speaks about disability I often groan inwardly. Even a brilliant man has flaws. For instance he stated:

If one is disabled, one should concentrate on the things one can do and not regret the things one cannot do. In fact, my disability has been a help in a way, it has freed me from teaching or sitting on boring committees and given me more time to think and do research.Theoretical physics is one of the few fields in which being disabled is no handicap - it is all in the mind.
For Hawking, life is indeed all in the mind. I do not get a sense he has any contact or interest in other people with a disability. I do not think he has any interest in disability rights. This is of course beyond criticism. He can do whatever he likes with his life. The same can be sad for me. But when I read that his disability freed him from teaching or boring academic meetings I shake my head. Talk about being part of the Ivory Tower! Not many academics live in this rarified realm. I am equally sure he is very confident safe guards will protect people who might be pushed or encouraged to end their life. I do not share this optimism. I live in a world where disability based bias is rampant. I live in a world that remains largely inaccessible. I live in a world where health care providers express great angst about the cost of making facilities and private practices accessible. I live in a world of tight budgets and too often see the first line item cut pertains to equal access. At the age of 71, I have no hope Hawking will turn his superior intellect to the sort of real world worries other people with a disability occupy themselves with. In fact, when I watched the short clip of Hawking I recalled an anecdote I read about Dwight Eisenhower. When Eisenhower retired he realized he had not answered or picked up a phone in decades. Apparently generals and presidents do not answer the phone or make phone calls. Eisenhower  was supposedly startled the first time he had to make a phone call on his own. He had forgotten what a dial tone sounded like and had to ask his wife for help. Hawking is a man of such privilege. When Hawking talks of the cosmos he is the man. When Hawking talks about disability or assisted suicide he is a mere mortal. As flawed as me and any other human.

Barry Corbet: A Long Overdue Appreciation

I deeply admired Barry Corbet. His writing appealed to me for a variety of reasons. He published essays in an eclectic collection of magazines and was quick to grasp the importance of the internet. He always made astute observations but what really drew me in was the fact there was a subliminal fuck you attitude in his work. He was smart. He was an accomplished outdoorsman and athlete pre and post SCI. He had a healthy ego. He knew how to have fun. He had a distinguished career as a mountain climber. All this was on display for one that read his work carefully. His personality was imprinted  on the pages of New Mobility during his tenure as editor. Speaking of which, in the most recent issue New Mobility has an article by Broughton Coburn. The article is based on a longer essay in  Dartmouth Alumni Magazine.  See: http://now.dartmouth.edu/2013/07/the-remarkable-life-and-uncommon-courage-of-barry-corbet-58/ 

By far my favorite article Barry Corbet wrote was published by the AARP. It concerned his admission to a nursing home after shoulder surgery. It was was chilling and insightful on par with Erving Goffman's classic text Asylums. What I vividly recall about the essay in question was the understated and insightful observations about institutional life. For example, I found this passage and was struck by its balanced observations: 

For 35 years riding a wheelchair has been a distinguishing mark of my identity. In the group photos the wheelchair is what makes me easy to spot. Not here. Here my persona is preempted by all these stupendously old women—there are very few men in the long-term care sections—who create gridlock in the dining room and accidentally lock wheels passing one another in the halls. Practically everyone’s in a wheelchair, but I’m the only one not new to wheels. Wheelchairs are engines of liberation to me. They enable me to go where I want, when I want. This place reminds me why nondisabled people think they are tragic. In the custodial sections residents are propped up and seat-belted in their chairs, left with nothing to do but the impossible task of getting comfortable on old, unupholstered bones. Their heads hang down and they wait, their chairs no more than movable restraints.

Stillness. For a man of action and powerful intellect the stillness and lack of stimulation must have been soul crushing. Another article Barry Corbet wrote has been on my mind. Here I refer to "The Conquest of the Ordinary". See: http://barrycorbet.com/john-young-lecture.html This Thursday I will be giving a talk to medical students at UpState Medical School. I find these opportunities to speak to young men and women embarking on a medical career fascinating. My experience as a morbidly sick kid from 1969 to 1979 fits firmly within the realm of medical history. Obviously, revolutionary change in medical technology has taken place. There have been equally profound changes socially and practically. Rehabilitation today for people post SCI is short--mere weeks. Much time is spent on "recovery". In the olden days "recovery" was hard core and meant something radically different. What was instilled in us was an intense form independence. To ask for help was strictly forbidden. No one spoke about recovery. If the word was used it meant a well fitting wheelchair, the ability to do every transfer one could imagine, getting from the floor back into a wheelchair, driving, and every activity of daily living. Yes, much time was spent on ADLs. What I recall the most during rehab ws fear. I was 18 years old and hell bent on going to college. Denizens of rehabilitation were a strange mix of humanity. Older folks dominated most of whom had a stroke. I recall a paralyzed neurosurgeon who was in car wreck. He was a miserable and nasty man. I vividly recall a blackman my age who had been shot. He was smart and hardened. He wanted to be a drug dealer as soon as he was released. We had nothing in common and yet got a long and liked each other. I hated the way the old folks would fawn over me and say that my peer "was from a different culture". Never had I seen such obvious bigotry.

All of us in rehabilitation shared one thing: we worked hard. I suspect all of us were driven by fear. Old folks did not want to end up in a nursing home. I wanted to go to college. Our days were booked from early morning to early supper. Therapy was non stop. At the end of the day we were exhausted--bone weary. We had a lot of time to kill at night. And like many people under great stress we acted out. We drank a lot. We smoked pot. We took drugs--legal and illegal. We had sex (gasp). We pushed staff members to the limits both good and bad. Some staff member could not take us and quit. I get this. We were a rough crowd. Others fell in love and got married. It was all very primal and unique. The best way I can describe the social and physical environment was a mix of hard core neurological rehabilitation and research, a party hardy college campus, military boot camp, and the wards were akin to Animal House like fraternity. 

Rehabilitation today is mechanized and isolated. Many rehabilitation centers are in lovely but remote areas. A system exists. People are streamlined through a shockingly brief stay. There is an utter lack of disability culture. In fact if a culture of disability exists it is the creation of cure junkies. This is not a bad thing but rather very different. What is missing is the lack of connection with the larger world of disability. Yes, guest speakers with a disability visit. But those invited are for instance parlympians. Again this is good but unrealistic. Newly minted crippled people are isolated and have no roll models. They are just not exposed to typical post SCI lives.  They do not know a vibrant disability culture exists. They have no clue, none, disability rights and civil rights are one in the same. They have no idea about the history of disability or that the vibrant field of disability studies examines our past and present.  This is sad. And thus Corbet's essay circa 2001 is remarkable more than a decade later. He wrote: 

We've patched together our lives after years of disability, and now we're patching together our culture after decades of fragmentation.  We've reinvented ourselves personally, and now we're doing it collectively.We need your help.  Newly injured people aren't being reborn into a vacuum; they need to know that.  They won't want to belong at first -- you can't really argue that disability is just what they always wanted -- but that changes.  Please -- direct your patients to our culture, make them aware of it.Teach us to fight our isolation.  We need to maintain our connections.  It's hard for a lot of us to travel to see friends.  If we don't go to work every day, we don't see new people.  Our working friends are usually free in the evening, but some of us can't socialize then:  We fight chronic pain or we don't have transportation or we spend our evenings doing two-hour bowel programs.Teach us not to go gently.  Teach us to fight the loss of every old friend and lover.  To call, e-mail, write.  To be available.  Teach us to observe the occasions, to nourish the memories.  A lifetime of relationships is one of life's best rewards; losing them is one of its worst mistakes.  It's not always a simple matter to connect your patients to their culture, but there is one easy way.Expose them to the disability press. 

The disability press today can be characterized in a variety of ways. It could be the collective blogs and websites produced by people with a disability. It could be disability studies departments nationwide. It could be adaptive sport programs located at many ski resorts. It could be Syracuse University Disability Culture Center.  It could be independent living centers that dot the landscape. After reading many of Corbet's essays over the last few days combined with new job enthusiasm at Syracuse University I am energized. I get up well before dawn these days. I am writing a lot. I am socializing. I am advocating for disability inclusion at the ASBH. I am about to take on utilitarian philosophers in November when I talk at Yale University. I am enthused by my students in the honors program at Syracuse. In short, like Corbet I am drawn to disability culture. I just wish newly minted cripples knew about the world in which I navigate.