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Friday, October 4, 2013

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:

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:

Thursday, October 3, 2013

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: 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? ( Caplan, the go to bioethicist for every news outlet in the country supported the surgery in a recent op-ed. See: .
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: 
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. 

Sunday, September 29, 2013

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".