Feminism and Disability Collide

I read the below, Feminists Are Not Responsible For Educating Men, and cannot get these words out of my mind. See http://cwinterfox.wordpress.com

As a vocal feminist with many intelligent, lovely male friends, I’m often met with indignance when I choose not to engage with them about feminism. Surely if I reallycared about changing our culture of discrimination and inequality, I should be trying to educate men? Isn’t that an activist’s job? Shouldn’t feminists be grateful when men want to bounce questions off us, because it shows that they are at least trying to understand?

It’s both exhausting and diversionary being expected to hash out the basics with men who haven’t bothered to think about their own privilege before. Men are not entitled to expect feminists to educate them. Real change will only happen when men accept that the burden of education is on them, not on women.

The post concludes:

If you are in a group that has the structural advantage of wages, safety, health and education – when you’ve basically already won the life lottery just by showing up – it is your responsibility to educate yourself. And really, don’t tell women to be nice. We’re angry. We have every reason to be. Frankly, you should be too.

There are days I am tired of doing disability based education and awareness. It is in fact exhausting at times. I have been at it for 35 years. When is the typical bipedal person going to finally get it. I am a human being that just happens to be paralyzed. The barriers that exist are socially constructed. So I like it when someone else reaffirms it is okay not be nice all the time. It is okay to be angry. And ignorance is no excuse for bigotry. Get educated people! 

Wheelchair Industry: A History Lesson and Defeating Reality

My wheelchair frame is old. I am guessing it is at least 20 years old. As of today, I have two wheelchair frames. A third frame was retired a few years ago. The frames have worked wonderfully for me. The frames have one drawback:  they are heavy. Really heavy. This was never an issue. I wanted a wheelchair that suited my lifestyle. It had to take abuse and operate flawlessly in all weather conditions. Routine problems such as flat tires had to be easy to repair. It needed parts I could find them at any hardware or bike store in the world. I regularly change the upholstery and tires. Every five years or so I have the frame powder coated.  Major problems had to be possible to resolve. For example, many years ago Northwest Airlines cracked the frame. I vigorously complained and insisted the frame be repaired. Hours later I had it welded back together in an obscure jet hanger in Detroit. While the frame was repaired I had a nice chat with a mechanic who told me the airline routinely breaks even the hardiest products in its cargo holds. 

In recent years my life style has changed. I am settling into middles age. Sigh. I do not travel as much and when I do it is from one airport hub to another. I am active but in a middle aged way. I do not take stupid risks assuming all will be well. More to the point, my wheelchair is heavy and is at this point verging on too heavy. In short, I need a I need a new wheelchair. I have been searching for a good wheelchair for the last two years. My search has reminded me why I despise wheelchair manufacturers. One can purchase a slew of inferior wheelchairs for thousands of dollars. My needs are simple: I want a wheelchair that is light and tough. I want excellent wheels and the best hubs money can buy. This presents a multitude of problems. Wheelchairs are not made to last more than a few years. The wheelchair industry is dominated by one company--Quickie. The Quickie corporate entity Sunrise Medical is the modern day equivalent of Everest & Jennings that once enjoyed a monopoly on wheelchair manufacturing. The mere mention of E&J decades after they went out of business still prompts me to utter a string of curse words. E&J was despicable company. Sunrise Medical is not much different. I see lots of Quickie wheelchairs in various states of disrepair. I am not at all impressed. They have a lego approach to wheelchair building. They use the same parts on all the wheelchairs manufactured. The designs are periodically changed but there is one constant: they are poorly designed and fall apart after a few years of use. I would rather crawl than buy a Quickie wheelchair. 

Plenty of small companies manufacture wheelchairs. They eek out an existence in the shadow of the giant Sunrise Medical. Some small companies make a profit and cater to specific clients. The current climate in the wheelchair industry reminds me of the late 1970s and early 1980s when the E&J monopoly was busted by the Department of Justice. Every paralyzed person I knew back then despised E&J. If my memory is correct my first few wheelchairs were  E&J Stainless steel sport. These wheelchairs weighed about 50 pounds and screamed danger, sick person present. Worse, these wheelchairs were designed to be used indoors by an elderly person and could not be purchased without a physician’s approval. E&J wheelchairs were substandard at best. E&J wheelchairs had not changed for decades. Wheelchairs were literally a cash cow. E&J knowingly and willfully stymied any attempt at innovation.  One could fold an E&J wheelchair but the frame was very weak. When a frame cracked, as they routinely did, E&J considered going up or down a curb and many other routine activities "abusive". I went through a lot of wheelchairs. Worse, the people that worked for E&J were condescending and rude. Thanks to the Department of Justice, social and legal advances, and decades of angry customers a revolution took place in wheelchair manufacturing. The rigid frame was invented. Power wheelchairs were also invented at this time but that is a very different story. 

Rigid frame wheelchairs originated in California. People with a SCI for the first time in history were not only surviving but thriving. The Vietnam War certainly was a major variable as was the fact spinal cord injury was the signature would of that war. A critical mass of pissed off paralyzed people had been obtained. With nowhere to turn paralyzed men and women started to experiment.  Lots of people began to make wheelchairs that were sturdy and could withstand the rigors of a typical life. People began to borrow ideas from the aviation, motor cycle, and bicycle industry. Fabricators got involved as did various industrial designers. Within a few years rigid framed wheelchairs developed a cult like following. People had heard about the rigid frames and the cool factor was off the chart. Keep in mind back then there was no such thing as the internet.  Adaptive sports consisted of wheelchair basketball. Wheelchair basketball and tennis wheelchairs did not exist. Sit skis did not exist. No one thought of making a well designed wheelchair for a specific sport or purpose. Paralysis, people assumed, precluded involvement in sports and an active life.   

Rigid frame wheelchairs were not mass produced in the late 1970s and early 1980s. They were made one by one. They were made largely by paralyzed people in their garages. Some were made by physical or recreational therapists who became friends with paralyzed people. The people that made rigid frame wheelchairs also sold and marketed their product. The market was friends and friends of friends. It was not unusual circa 1980 in California for a person to show up at the door of a person that made rigid frame wheelchairs and ask for one to be made.  Why were people so excited? Rigid frame wheelchairs do not break. Welds held up under rigorous use. A host of colors were available for the first time. Wheels and hubs were of high quality. Quick release hubs were utilized. All this is commonplace today but back in the day this blew people’s mind. It blew my mind. A wheelchair that did not break, came in any color I wanted, and could last a long time. 

Dozens of companies popped up. Bob Vogel has written about the origins of the rigid frame in California. Graham Pullin touches upon the subject in in his book Design Meets Disability. At first glance, a wheelchair appears to be simple. Four wheels and a seat. The fact is making a durable, tough, and light weight wheelchair is exceedingly complex and requires technological sophistication in multiple fields. Radical innovation is also not easy to see. Instead, radical innovation is felt by the user. Such innovation is costly and dependent upon the durable medical goods industry. Another significant variable is wheelchairs are manufactured for what health insurance companies are willing to cover. The same problem exists in adaptive sports. Hand cycles, sit skis, basketball and tennis wheelchairs are made to meet the needs of adaptive sport programs not the athletes themselves. The result is a limited number of spectacular and empowering products have recently emerged that no one can afford.  

Last summer I tried the Panthera X. The wheelchair in my estimation is the first radical leap forward in wheelchair design since 1980. The wheelchair is deceptively simple. It is an elegant design that took years and millions of dollars to create. The Panthera X is marketed as the lightest rigid frame wheelchair in the world. I took it for a quick spin around a parking lot and was flabbergasted. The wheelchair weighs 9.7 pounds and the frame is made of carbon fiber. The down side is the price. It costs in excess of $10,000. All its parts are proprietary. Thus if any part of the wheelchair breaks life will come to a sudden and dramatic halt. A person needs to shell out $10,000 and have an operational wheelchair in reserve. The Panthera X wheelchair cannot be insured. I would have serious concerns about getting on an airplane with an uninsured $10,000 wheelchair. This makes no sense. You can insure a car and a cell phone but you cannot insure a wheelchair. And more to the point, how many people can shell out this sort of money when70% of people who are disabled are unemployed. But what the heck--the cool factor is off the chart. 

Let's put this in perspective. The above massively cool life altering Panthera X wheelchair costs in excess of $10,000. The Nissan Versa 1.6 costs $9,999 brand new.

A car costs as much as a manual wheelchair? Really? Do not get me wrong. The Panthera X is an amazing wheelchair. I am sure about 1,000 people in the United States are going to be thrilled with this wheelchair. That leaves several million other paralyzed people that will move on with inferior short lived wheelchairs made by Quickie. This makes no sense. But I have a dream. In order to empower paralyzed people here is what I think should be done. If appropriate purchase a Panthera X for a paralyzed person. Give a person 6 months of intense rehabilitation. Give a person his choice of a handcycle or sit ski. Give this person two years worth of lessons at adaptive sports centers. Send this person to college or place them in a work study program. Have a job placement office at the rehabilitation center. Finally give this person a life time supply of wheelchair cushions and urological supplies. Sound expensive? You bet. And there is not a doubt in my mind this would save hundreds of millions of dollars. Imagine if it reduced the unemployment rate among people with a disability from 70% to 20% That would mean 80% of people with a disability would be working and paying tax. There would be a demand for accessible housing and transportation. The world would be a better place. Lives would be saved. And sadly I am dreaming. It ain't never gonna happen.     

The Paralyzed Bride Draws My Ire

The Huffington Post published an article about a week ago by Rachelle Friedman, “Paralyzed Bride Speaks  Out: More than Equality, We Want a Cure”. See: http://www.huffingtonpost.com/2013/10/04/racrachelle-friedmanhelle-friedman_n_4044820.html   I have never met Friedman. Based on what I have read about her life post spinal cord injury I am decidedly unimpressed. Any article I have read by Friedman or about her life has a singular focus: the drama and supposed  tragedy or her injury (she was injured at her bachelorette party and is a C-6 quadriplegic). The photographs that accompany articles by Friedman and those about her often show her in a wedding gown. This image as well as the below is designed to prompt an emotional reaction--specifically pity. The plucky and attractive woman paralyzed and confined to a wheelchair. Cue the emotional music and send in your donation to some stem cell research center. 

Friedman has appeared on the Today Show, CNN, MSNBC, VH1 and has written about her post SCI life in the Huffington Post and some other news outlets. I do not like to comment on recently paralyzed people. It often takes years to physically and mentally adjust to paralysis. Another variable is the cure industry that dominates the sort of rehabilitation a paralyzed person receives. Many rehabilitation centers focus on the hazy idea of  cure as much on the needed skills to adapt to life post SCI.  Add in most rehabilitation stays are shockingly short  thanks to the insurance industry and the majority of newly minted crippled people are set up to fail or at the very least struggle mightily. By fail I mean end up readmitted to the hospital and subsequently shut into an institution (nursing home) or inaccessible home.  The primary reason I have refrained from commenting is that whenever I take a paralyzed person to task the inevitable comments that follow will be many and nasty. I also know I will be deemed bitter and hostile. Thus for those looking for a rosy assessment of Friedman stop reading now. For those that are interested in the social significance of paralysis I think I have something to offer that is not available anywhere but within the vibrant cyber world of disability rights blogging and disability studies. The mainstream press is not ready for a man like me. 

Friedman’s articles in the Huffington Post are fluffy and devoid of substance. She consistently focuses on a cure for spinal cord injury. Paralysis is bad and an individual tragedy. This  simplistic story line makes for catchy headlines, sells  newspapers and generates good television ratings. Friedman is an archetype that warms the souls of bipedal people who know nothing about disability--aside from the fact they too could become paralyzed. I just groan when I see a person like Friedman and the many like her the media embraces.  Come on, who does not like an old fashion tear jerking story? The narrative is dependent upon a tragic and preferably young and attractive figure, male or female. In Friedman’s case she is the beautiful young woman struck down and paralyzed mere weeks before her marriage. Hand out the tissues for the tears are sure to start flowing. What gets me is this works! It has worked for decades. People lap up this narrative like nectar of the gods. 

What does Friedman have to offer the bipedal masses? Trite observations such as: “Think about what you do have and not what you don’t have. Remember what’s really important. Well, it is what it is. Realize everything is relative. Have a sense of humor”. Friedman is asked to articulate these gems for one reason: her life is a tragedy and she is an object of pity. This, as I have said, is an old story--a story I would normally be happy to ignore. But one observation by Friedman got me. I keep thinking about just how wrong it is.  What exactly did she write that has warranted a post? Friedman wrote that she wanted others to know one can be happy and competent post SCI. This is "insight" is not enough though. Adapting to life post SCI has a down side and she speculates:

“Is it possible that showing such positivity could mask our daily hardships to the point that the urgency for a cure is diminished? Don’t get me wrong, its important society knows that we are more able than most would imagine.  But it sometimes feels like it is the only message we’re getting out. What about a desire for cure?   

And here comes the kicker, this is what sent me over the edge. 

I personally want society to know that 99 percent of us don’t feel that way. That we want a cure now and we want it now.

I could humorously note I have been suddenly thrust  into the 1% Okay, that is not a constructive sentence. A cure for SCI is a laudable goal. I have stated this repeatedly. I simply have no interest in a cure. Not a single paralyzed person I know has expressed an interest in a cure. Like the vast majority of paralyzed people I am too busy trying to be ordinary. Ordinary in the sense I live a rich and full life. I work, teach, get together with friends, write about subjects I care deeply about, love my family (and my gorgeous dog Kate), enjoy fall sunsets, cook what appeals to me... None of this is impressive. In fact it is very ordinary. But I am not ordinary. I am paralyzed. I use a wheelchair and disability based social bias exists. Bigotry based on physical difference is rampant. While no person will call me a “worthless eater” as the Nazi’s did long ago that does does not mean significant barriers have been eliminated. About 70% of people with a disability are unemployed and live at or below the poverty line. This figure has not changed significantly despite the fact 40 years of progressive legislation designed to empower people with a disability has been passed into law. Most people with a disability remain socially isolated. Most struggle to access basic health care. The fundamental inequities associated with disability are simply not part of the national discussion when it comes to health care, employment, and equal housing. We are in every conceivable way disenfranchised. 

When I read any article by Friedman I shake my head. Surely I think she will get it at some point. Well, those that don't get it are embraced by the media. Those with a disability that frame their existence as a tragedy are lauded. I, on the other hand, am dismissed as a crank--a bitter man miserable about his lot in life. I find this sad and deeply problematics. I want to be an agent for social change but mainstream America is not buying what I am selling. As a result, I feel a major disconnect between Friedman's life and mine. After I was paralyzed it did not take me long to realize that disability is primarily a social disease. Robert Murphy wrote this in 1987. I was relatively new to paralysis and Murphy blew my mind. In the Body Silent he articulated what I had been feeling for almost a decade. I was the same person I was before I was paralyzed but I sure as hell was not being treated with anything close to the respect I once thoughtlessly enjoyed. So I read Friedman and I am mystified. Does she and her type, recent post SCI that cannot envision anything beyond a medical model of disability, really individualize her paralysis? Do 99% of her peers really want a cure--a cure now god damn it?  I find it impossible not to question why, to quote Friedman, “there are so many stories of wheelchair users overcoming the odds”. Exactly what is being overcome? I learned long ago the physical aspect of paralysis required out of the box thinking. With a little thought a paralyzed person can avoid the vast majority of complications associated with SCI. Evolutionary theorists call this human adaptation and we humans have been adapting for millions of years. The so called overcoming involves needless social barriers. A point missed by far too many. 

The idea that the mainstream press focuses almost exclusively on how people overcome their disability is laughable. Such stories are indeed repeatedly trotted out in newspapers and television programs. They are all the same. Disability is a tragedy that can be overcome through hard work and effort.  This is exactly what people want to read. These stories require no thought and in fact make typical (non disabled people) feel good about their life. The thinking is as follows: in 500 words or in a three minute video clip one concludes disability is bad, I am glad I have not acquired a disability, and that single individual overcame a disability. Some may speculate if one person can overcome his or her disability so should every other person. Those that do not overcome disability are failures or simply lazy. This line of thinking is utterly devoid of substance and undermines the premise of the ADA--the gross and commonplace civil rights violations. 

There is a single point of agreement I share with Friedman. She thinks that when it comes to disability the general public is clueless. This is undoubtedly correct. But Friedman fails to ask the all important question why. Why does the general public fail to understand the “hardships” associated with disability? People see a paralyzed person and think the inability to walk is terrible. The inability to walk is the least important issue a paralyzed person must deal with. The basic physical problem is the refusal to negotiate difference and the way we paralyzed people navigate the world. People revere steps and bemoan the inclusion of ramps as ugly or worse yet the cost associated with wheelchair access in the form of elevators and wheelchair lifts. A waste of limited resources for a few individuals--I would be a wealthy man if I had a dime for every time I heard someone say this. Almost 25 years after the ADA was passed into law barriers to inclusion still exist--both physical and social. Yes, progress has been made but that change has been done begrudgingly and is not valued. Many bitterly complain the ADA is “an unfunded federal mandate”.  This statement reveals just how ignorant people are. The ADA is first and foremost civil rights legislation. It is an “onerous burden” and “unfunded mandate” because no value is placed on the inclusion of people with a disability. This is a human rights violation that gets no press. 

I am not the only person that has taken Friedman to task. Emily Ladau at Words I Wheel By wrote  “Why Curing Disability Should Not Outweigh Equality”. See:  http://emilyladau.wordpress.com/2013/10/07/curing-disability-should-not-outweigh-equality/ I urge people to go to this blog post and read not only this entry but the long comment thread. Another blog worth reading is That Crazy Cripple Chick. Please read "Screw A Cure, I want Equality: A Letter to Rachelle Friedman". See: http://thatcrazycrippledchick.blogspot.com/2013/10/screw-cure-i-want-equality-letter-to.html Frankly, I think these posts are too kind. I think Friedman needs to do a lot more thinking and reading. At the top of her list should be the extensive literature in disability rights.

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.