Assisted Suicide and the Unarticulated Dangers

I am adamantly opposed to the legalization of assisted suicide. Opposing assisted suicide is not an easy fight. Groups such as Compassion and Choices dominate the mainstream media on end of life issues. Add in far too many Americans die badly and tragic stories about end of life abound (think Brittany Maynard) and the discussion about assisted suicide is highly emotional an often devoid of reason and logic. This is purposeful--gripping emotional stories sell news papers and generate television ratings. Fever pitch emotional responses to stories also enable people to avoid discussing the complexities associated with death. No one wants to talk about their inevitable death. A serious and sober discussion about the circumstances associated with one's death is very hard but necessary. I would suggest end of life should be an ongoing discussion held increasingly often as people age. The vast majority of people do not do this.

I have been thinking a lot about end of life issues. The viewpoint of the disability community in the broadest sense of the term is acknowledged by the medical establishment. Are our concerns taken seriously? I do not think so. I think many in the medical community scoff at us when a person such as myself states I fear hospitalization and health care providers. Dismissing the concerns of people with a disability is easy to do when one has been firmly in control of their personal and professional life. It is also easy to dismiss the stigma that disability generates and perceive people strictly within a medical model of disability. Health care professionals work in the hard sciences and deal with facts--how could bias exist? Oh, how bias, deadly bias, exists. I experienced this first hand in 2010 when a hospitalist vaguely suggested I need not take powerful life saving antibiotics and instead let nature takes its course. He added that I could be made very comfortable. Link: http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5905. This suggestion was made in the middle of the night while I was vomiting.

The memory of that night came roaring back yesterday when I read a deeply moving and disturbing post at an outstanding blog--Star in Her Eye maintained by Healther Kirn Lanier. Read about her at: http://heatherkirnlanier.com. More importantly read her blog Star in Her Eye. Link: https://starinhereye.wordpress.com. Star in her Eye is about Kirn Lanier's daughter Fiona who has "Wolf-Hirschhorn Syndrome". The love in Kirn Lanier's heart for her daughter leaps off the page. She is "mothering a special girl" and is an eloquent writer. Reading her blog though is tough stuff. The bias she has experienced raising her daughter--bias on the part of health care professionals charged with caring for her daughter Fiona--is gut wrenching. Her posts have left me laughing, angry, and enlightened. If you are looking for inspiration you will find it in Kirn Lanier's efforts to raise her daughter Fiona. I am not referring to so called "inspiration porn", that is utterly absent in all her posts.   Her blog is inspiring because she and her husband are raising her daughter in a way I deeply admire. In fact she and her husband remind me of my parents who, for over a decade of one medical crisis after another, fought to empower me so that I could get everything out of an atypical body.

Not all physicians share Kirn Lanier's goal. A recent post entitled "The Neurologist" sent a chill all the way down my spine (actually the chill went to down to T-3 and dissipated). Link: https://starinhereye.wordpress.com/2015/06/10/the-neurologist/. What should have been an ordinary check up and discussion of a seizure medication with a neurologist turned into an offer to euthanize Fiona. The tightly written post should be read in its entirety in order to grasp the nuances that unfolded with the "thin, long, seventy-something-year-old face [that] stayed neutral".  Think ordinary physician with decades of experience likely beloved by all. Clearly this man could not be perceived as a bigot or biased. The mere suggestion would be insulting and outrageous. After the neurologist told a tragic story to Kirn Lanier and her husband (Fiona was present as well) and temporarily left the room she recalled:

"What!" I said, shocked. "How did we get from seizure meds to euthanasia?"
"No idea," my husband said. "Now I wanna see where this thing is going."
I laughed, but it was a laugh stemming from the urge to cry, or an urge to do something beyond crying, which did not exist in my body, and so I laughed.

Kirn Lanier went on to write:

I wanted to shake my head so hard my cheeks would slap against my gums and afterward I'd find myself in a different doctor's office, where a different doctor didn't bring up the killing of disabled people, where a different doctor didn't liken my reluctance of a drug to an inquiry about killing one's kid...

What angered me after the neurologist's office that day, which happened maybe a year ago but hasn't left me yet: I'd venture to say very few parents of able-bodied kids have had to suffer through a doctor's story about euthanizing kids like their own. I'd venture to say most parents of able-bodied kids don't have any of their doctors bring up the legal and ethical question, "Should kids similar to your kid be killed?"

In the parking lot Kirn Lanier and her husband decided to never return to the neurologist. I admire this decisive decision. I saw my parents do the same with my input as a kid. The key word in the quotes above is suffer. When I read about Fiona and other children and adults with a disability I do not think these people have a life dominated by suffering. Is life with a disability easy? Of course not. Would most people prefer to live without a disability? Likely yes, and as I joke with friends, I cannot recommend paralysis. But suffer? No. Perhaps we people with disability suffer differently than others with a typical non disabled body. Yet, suffer? That is very far down my list when I contemplate my life. However, disability and suffering, for some health care professionals, cannot be separated and go hand in hand. What some medical professionals see is pathology. They see all that cannot not be done when compared to an ordinary body. In this comparison test people with a disability will always fail. Far too few people see what a person with a bodily or cognitive deficit can do. Disability in the broadest sense of the term give and takes. Positives and negatives exist. Oh, how I love to ski or bike or kayak. I love the rhythm of pushing my wheelchair up hill and once at the crest cruise down and feel the wind in my face. Is this any different from what bipedal people experience? I think not.

Suffering enters my life when I meet people who think death is preferable to a life with a disability. These people, like the neurologist that Kirn Lanier spoke with, people that accost me, utilitarian philosophers all think disability and suffering are tied together like two peas in a pod. This assumption scares me to my very core. I read Kirn Lanier's post and realize fear is a healthy emotion. Indeed, my fear could save my life when accessing helath care. I fear the medical professional who is so kind and all knowing that out of the goodness of his/her soul will end my suffering. I often shake my head in wonder that so many people do not get disability. I do not understand why people are in a rush to die and avoid losing control over death. The likelihood we will be in total control over our death is a rarity, not the norm. People do not die in physical pain thanks to significant advances in medical care. So why is assisted suicide often in the news and why are such laws being passed? In my opinion people that support and vote for such legislation have not put much thought into the issue beyond control over your death is common sense.  Another variable is many people enjoy decades of good health and lack experience in a health care setting. This is why people with a disability voices, narratives if you will, are so important. We routinely interact with health care professionals. Most of us have seen the very best that medical care has to offer and some of the worst. We people with a disability are seasoned veterans in terms of health care. Hence rather than have our concerns dismissed we should hold a central place in the discussions about end of life issues. The fact is if you live long enough it is highly likely you will acquire a disability. That disability need not be feared. It is a part of life. Disability has in some ways enhanced my life in that is has insured I lead a different life. I have learned so much from encountering disability based bigotry. I am far stronger person, more sure of myself, and willing to advocate for all others who are disenfranchised.  Like I noted, disability gives and takes. Given this what we need is not assisted suicide legislation but the amelioration of disability based push for death. No parents, especially parents like Kirn Lanier and her husband, should be subjected to a doctor that suggests euthanasia for a child with a non terminal condition; and more selfishly nor should I.

FIRE!

For those interested, my essay in Atrium Bad Girls issue edited by Alice Dreger continues to have a  ripple effect. Today FIRE weighed in with a press statement. Please note the issue of branding. Hospitals, rehabilitation centers, and other large institutions have embraced the "brand" in the last decade or more. One does not go to rehabilitation centers one can go to rejuvination centers. Yes rehabilitation can be called rejuvenation just as nursing homes are now"branded" as long term rehabilitation centers. Branding is nothing more than a slick advertising. Oh, how I wonder what my father would think of this as he spent his entire career in advertising. Part of this advertising is to produce glossy magazines that sell the hospital, a specialization in a particular type of surgery, or a focus in rehabilitation. If you are thinking inspiration you are spot on correct. The story in bold print, replete with high quality photographs that  proclaim "Paralyzed at 18 Now Walking Two Years Later".  You get the idea--miracles do happen--but you must come to our facility. That is what Atrium can be turned into. At this point branding has completely saturated the rehabilitation culture. An essay like mine that illustrates rehabilitation is first and foremost gritty hard work. I often joke I want to name a rehabilitation center "Shit and Piss" for once you control or have a handle on those two bodily functions anything is possible. This is not a brand people embrace. It is my hope Atrium will remain what it has always been: an eclectic high quality academic journal known for pushing the edge. Let's hope Northwestern gets a better grasp on academic freedom.

Link: https://www.thefire.org/northwestern-risks-academic-freedom-again-by-censoring-bioethics-journal-with-bad-girls-theme/ Below is a part of the statement. Use link to read the below in its entirety.



Northwestern Risks Academic Freedom (Again) by Censoring Bioethics Journal with ‘Bad Girls’ Theme 

June 16, 2015

CHICAGO, June 16, 2015—Academic freedom is apparently no longer a part of Northwestern University’s “brand.” For over 14 months, administrators at Northwestern’s Feinberg School of Medicine (FSM) censored Atrium—a faculty-produced bioethics journal—because an issue featured content with a “Bad Girls” theme deemed too salacious for the university’s image. Northwestern is now requiring that future journal content be reviewed by university administrators prior to its publication.

This is the second time in less than a month that Northwestern finds itself at the center of an academic freedom controversy over issues of sex and gender. The Foundation for Individual Rights in Education (FIRE) wrote to Northwestern on May 26, calling on the university to honor its promises of academic freedom and cease its repeated intrusions on Atrium’s editorial independence. The university has yet to respond.

“The ability to explore controversial subjects lies at the heart of academic freedom,” said Peter Bonilla, Director of FIRE’s Individual Rights Defense Program. “Northwestern cannot promise ‘full freedom in research and in the publication of the results’ while limiting that freedom to protect its ‘brand.’ A university’s brand should be the unfettered search for truth, not politically motivated censorship.”

What Does Accessible Mean? Not Much

I like where I live. The town I reside in is largely inaccessible and town power brokers detest the push for wheelchair access. I have heard many local people state that town buildings are more important than people. What I like is what everyone likes--the town is picture perfect and its location on a lake make it a great place to live and work. There are also great parks nearby and I am not too far from Syracuse campus. The draw is understandable. Yet I am thinking about moving. Why move?  Flooding is an issue that must be addressed. It has been three months of repeated spring flooding that will be addressed July. For now, my floor remains a concrete slab. The fridge is terrible and I have lost a lot of good food as it does not stay consistently cold enough. Three of the four burners on the cook top do not work properly. There is no oven beyond my toaster oven. There is no washer dryer (the local laundromat is expensive and a social adventure). The drive way is very steep. I get a serious work out getting in and out of my wheelchair. In terms of my day to day existence, where I live is a logistical challenge.

I have been looking around for a new place. This search is frustrating. Living in down town Syracuse or within walking distance of the university is not an option. Houses in the area are old and not remotely accessible. The larger homes near campus have been cut up into small rental units. Students abound as do the elderly. For practical reasons I get why many people who use a wheelchair would not live in this area. It is bitterly cold in the winter I am in the snow belt. It is also too expensive to live in most nice areas. The slums of Syracuse are dangerous. Crime and poverty abound. What draws me here? The university. I am also drawn to the winter weather. I love the cold and snow. I love the long harsh winters.  Central New York is gorgeous and the locally grown food is spectacular.  Corn season is a joy and small farms abound.

Back to my search for a new place. I have looked on line and taken to the road. I have looked at dozens of places. Almost all rental units are inaccessible in one form or another. I have gotten good at filtering out the grossly inaccessible rentals. Google maps is a time saver of epic proportions. I now reduce my search to units listed as "wheelchair accessible". This eliminates about 97% of rentals. I have quickly learned that even those listed as "wheelchair accessible" are not in fact accessible at all. Most of these units have what I would call "old people access". The assumption is a person has limited mobility. I visited such a unit the other day and had a remarkable conversation I cannot get out of my head.

Here is the "wheelchair accessible" unit.

Based on my experience, this is the norm when an apartment is listed as "wheelchair accessible". When I balked and stated the entrance was far from wheelchair accessible the person I met was perplexed. He said "Just walk up the steps and I will carry the wheelchair for you". I replied "I cannot walk at all". The man appeared stunned. In recent years I have heard variations of his reply. Once the man regained his composure he asked: "Can't you walk just a little bit". I replied "no". I could see this man was thinking hard. "Well", he said. "I think we can find someone to carry you in and out when you need to of out". Now I am stunned. I state "That will will not work and is against the law".  He mumbles something about lawyers and asked me if  I was new to the area? I reply "no". He looked even more perplexed. "You must be new to the area. You could not live here in the winter." I replied "I have lived through two Syracuse winters without problems". He now looks around as though he is being pranked. He tells me "That is not possible. No one using a wheelchair and unable to walk could survive the winter". I thank him for his time, assert the entrance is not accessible, and it should not be listed as such. I then wished him well. He stared at me in disbelief as I got into my car.

The above exchange was out of the norm.  However, it did highlight a few things for me. First, establishing a sociopolitical link with elderly people is impossible or will at best take decades to form. The elderly fear disability and many struggle with adapting to long term deficits. The elderly do not embrace disability as an identity or perceived themselves to be an oppressed minority group. Their standards for access assume a limited degree of mobility exists. The lack of mobility is linked to a lower quality of life. Second, few rental agencies or people privately renting out an apartment know a thing about access. Many so called "wheelchair accessible" units are not remotely accessible. Many rentals advertise an "accessible room" or "grand parent suite". This usually entails a basement room accessed from the back yard and is as a result accessible in the summer. There is no accessible bathroom or kitchen. Again, the assumption is the elderly person has some mobility and will only visit for short periods of time. Third, people are clueless as to what is accessible is. Thanks to the media one and all assume any adaptations costs a fortune. Ignorance abounds and accessible is solved by creating handicapped parking with the blue wheelchair logo. Yes, access can be resolved with some blue paint and a sign. No one it seems thinks beyond the paring lot. Fourth, disability is individualized. The lack of access is dealt with on a case by case basis. People with a disability are not an oppressed minority group but rather a problem. When I frame disability as a matter of civil rights most people with no experience with disability get angry or tell me I am an extremist.

I doubt I will move. The more I look at other places where I live is looks better by the day. What gets me is the ignorance. I want to know why, 25 years post ADA, people do not know and complain about barriers to housing, mass transportation and employment. What do our secondary schools teach about disability? My gut reaction is not much of anything. I fear what kids and adults soak up culturally is that disability is bad if not a tragedy. Segregation in the form of education, transportation, and housing is acceptable. Special education kids get shunted off to the special short bus and educated in resource rooms. Adults think equal access is too costly and ugly. Budgets are limited and we must do what is best for the largest number of students. Oh, I have heard this a million times. The net result is in area like Syracuse wheelchair access is an after thought. If someone does ask about access we, out of the goodness of our souls, will provide that highly unusual individual with a means of entry or inclusion--provided it does not cost too much. The net result 25 years after the ADA was passed into law is that 97% of housing in the Syracuse area is not accessible. I have damn good reason to be angry and I object. The current lack of housing options is unacceptable.  I just wish others, bipedal others, cared. A few do of course but not many.

On Liminality

I have not been posting as much as I once did. This is due to the fact in recent months I have been weary. I am weary of being different. The social response to my existence is rarely if ever positive. My body is well out of the norm. I have a profound and sweeping scoliosis. I have long hair I keep in a pony tail. I have a tattoo. I am almost always the only person present that uses a wheelchair. Strangers say incredibly stupid and nasty things to me on a regular basis. Christians want to save my soul or assert I am being punished for mortal sins my parents committed. I have even been deemed the anti-Christ more than once. Health food junkies insist I could be cured if I took a rare vitamin mixture only they know of. Some of these people will whisper in my ear "I promise it works. I was once crippled too". Gym rats insist they have an exercise routine that will spark my muscle memory and get me walking again. These social responses to my presence, especially to my body, bother me. I am not a target of opportunity but rather a human being. I am rarely treated with respect. My presence for many is a shock. I get praised for doing the mundane. Perhaps the intent of strangers is good (I highly doubt this) but I do not want to hear it. In my estimation the strangers that accost me are not charitable or kind. Their intent is to separate me from the heard of humanity. Once separated I am left for the wolves.  The wolves come in the form of men like Peter Singer and Jeff McMcMahn who think severely disabled infants or people who experience a high level spinal cord injury should be allowed to die. The wolves also include multiple groups that support assisted suicide legislation.

The wolves are everywhere. I am surrounded by packs of wolves and I worry for others like me. Wolves do not think I share the same civil rights as others--others meaning all those with a typical body. Bodies that are clearly not physically disabled in some way. Having a different body in the words of Robert Murphy, author of the Body Silent results in estrangement.  Post disability life he wrote left him "somewhat apart from American culture, making me in many ways a stranger. And with this estrangement has come a greater urge to penetrate the veneer of cultural differences and reach an understanding of the underlying unity of all human experience".  I read these words in 1987, nine years after being paralyzed. These words and the Body Silent changed my life. I was not the problem--a revelation to me at the time. I was, as were all people with a disability, liminal members society. We were betwixt and between in the estimation of Visitor Turner. Murphy noted that "The long-term physically impaired are neither sick nor well, neither dead nor alive, neither out of society nor wholly in it. They are human beings but their bodies are warped or malfunctioning, leaving their full humanity in doubt. They are not ill, for illness is transitional to wither death of recovery... The sick person lives in a sate of social suspension until her or she gets better.  The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people.

Society has changed since Murphy wrote about liminality and disability. In the 1980s people with a disability were indeed liminal members of society. We had no place. We had no rights. Our presence was an odious burden. We were barred from public schools and most universities. Our mere presence too upsetting for others, especially children (as a morbidly sick boy my siblings were never  allowed to visit me in the hospital). Fast forward to 2015. I believe we are no longer liminal members of society. We are something much worse. We are targets of opportunity. Our existence is fodder for philosophical discussion--paging Peter Singer and other utilitarian philosophers who are all too happy  to speculate if our lives are life worth living. I would contend liminality and disability have changed in that we are too numerous and expensive. We are no longer a statistical anomaly. As such, we represent a serious drain on health care dollars and the social safety net. Every request for support however large or small is met with skepticism.  We are kept on the razor edge of social and financial oblivion. If we fall off the face of the earth we will not be missed. In 2006 Alice Dreger has described what I would call liminality for the modern age: "Liminal", from "limen", "the threshold of a physiological or psychological response". And this is how you know you've found someone in a liminal state: you feel in yourself in that physiological and psychological response. The heightened visual sense, the whirring gears in your head, the lava flow in your guy. You know they are on the limit because you are suddenly there with them. All a-twitter. Oh how I feel this often. A seemingly nice person engages me and I know they will drop a degrading word bomb such as "It is so good to see you out".  The hairs on the back of my neck go up, my heart races, and I cannot disengage fast enough. Sometimes I am successful but not always. What I do know is that a demeaning effort is often used to denigrate my very existence. It is part social dominance with a dose of liminality. My existence is acknowledged and quickly determined to have no redeeming value. I have struggled with this since I was 18 years old. I have not had a place in society for my entire adult life. Worse, the last forty years of legislation designed to empower people with a disability is resented in a myriad of ways. The ADA, for example, has been met with stiff opposition and deemed an unfunded Federal mandate. I think liminality circa 1987 that Murphy eloquently utilized as a means of social analysis and critique was safe and insightful. Today, I am just fearful. Fearful of kind, caring others who will make the decision my life has no value and out of the goodness of their souls end my suffering or ship me off to a place out of sight and out of mind. If one thinks I am being alarmist I suggest a trip to the library and read some disability history. The past is grim as is the present.

All alone

I spent the early part of this week with a diverse group of scholars and emergency preparedness workers discussing the aftermath of Hurricane Sandy. The meeting is part of a large group of scholars who got a Sea Grant. It was truly an engaging experience and a welcomed departure from typical scholarly conferences. Our research was about why did people with a disability decide to ride out the storm. The concise answer is there was nowhere to go. Many of the NYC shelters were not accessible and people were turned away. In truth though, most people could not afford leave flood zones. Driving west away from the storm and staying in a motel was beyond their economic means. Some had no access to personal transportation in the form of a bus, van or car. Let me be very clear and reiterate--people had no where to go for a myriad of reasons. There were solid logistical reasons people with a disability rode out the storm. This fact has been conveniently overlooked and a few "experts" deemed people with a disability as non compliant. Technically this is correct. But take thought process one step further. Exactly how how were people with a disability supposed to leave flood zones? Were people with a disability part of the evacuation plan? In a word, no. This failure raised a fundamental question: do people with a disability have the right to be rescued. I would maintain and the court maintains the answer to this question is yes. See the Yale Law Journal article "The Right To Be Rescued: Disability Justice in an Age of Disaster". Link: http://www.yalelawjournal.org/article/the-right-to-be-rescued

Since I got home, I have spent much time thinking about the difference between the law and reality.  I  know when I enter a plane for instance the FAA has a protocol for getting me on and off the plane in the event of a disaster. I once kept abreast of such regulations but no longer do so. The odds of me surviving  a plane crash are too remote to worry about. More to the point, the reality is in the event of a crash I am going to be the very last human off the plane. Think about it: I can save myself from certain death or I can stop and try and figure out a way to help the crippled guy that cannot walk even a little bit get off a burning jet. Ah, mass transportation--no experience is better at reminding me my existence is not valued. Another example between reality and the law. Bus operators are required by law to test the wheelchair lift before a bus is put in service. Most bus drivers that know how to use a lift are unaware of this law.  The reality is buses are out and in service under the assumption the lift will not be used. The worst offenders in terms of non operational lifts are hotels. All higher end hotels typically have a shuttle service--typically a small bus or van. The wheelchair lift is not often used. In fact I have been told many times the lift has not worked in months and in some cases years. 

Clearly, a disconnect exists. The law is on the side of people with a disability but few follow the law. Indeed, the law is perceived to be an unfunded federal mandate and as such is an onerous and unnecessary burden. How do I know this? People tell me this often.

 Back to Sandy. We were in the most general sense of the term were not prepared for Sandy.  I sincerely doubt any person familiar with Sandy will question our preparedness was not adequate. The next time we get such a storm I am convinced we will be better prepared. But what I have been wondering about is the lasting legacy of the storm. How do people with a disability feel? I am not referring to how people with disability feel about Sandy and how inadequate support was at the time. How do people feel now? Now as in today. Various federal agencies covered the cost of housing for all survivors whose home were destroyed for 12 to 18 months. Most people with a disability post Sandy experienced multiple barriers social and practical. Below is a perfect example:

One year post Sandy I hold these truths to be self-evident: that, no men are equal. The weak and infirm hold up the line, are disrespected, left behind, trampled. He who is different must endeavor to be the same and keep up, or be dismissed and exterminated by broken, out-dated systems. Agencies and Programs for helping, are businesses and figureheads, not facilitators. There is no help for those who fall down. If your life was a pillar of good works, no one cares. Individuals do not exist in systems. Every person could fall down from a freak of nature, through no fault of his own and be dismissed, forgotten, smother in the shifting sands of broken systems. You are on your own. If you give your power away to barbarians, you lose your ability to take care of yourself, to revive. Link:http://disabledduringdisaster.com

 If you are not a cog, do not fit within the system problems abound. Do not deviate from the norm.  Do not request a "reasonable accommodation". Do not ask for more time to take a test. Do not ask about a wheelchair accessible room or the rent a car with hand controls. Do not try to get weighed on an accessible scale. It does not work and has not worked in years. Do not use a wheelchair lift. Do not be elderly and struggle with bills and change. Those behind you on line will huff and puff in annoyance. You must walk on a plane. If you need help you will slow down others. As in the above quote, "no men are equal". Hip hip hurray! The ADA says I am equal under the eyes of the law. That is not my reality. I am a man estranged from society and weary of others who have the power to decide what is and is not appropriate. We do not need an entrance at the front of the building. People who use a wheelchair can enter through the kitchen behind the dumpster. News flash: my sense of smell works fine and a commercial kitchen is a dangerous hectic environment. Oh, how the above resonated. "You are on your own". Oh how true. You are an individual not a part of the largest minority group in the country. You are alone. A mere individual and an unwanted one at that. Oh, we are so sorry there is no access. Sorry does not begin to cover it. 

Sports Illustrated and ALS as Inspiration

In journalism, the weakest writers in my opinion can be sports reporters. The back page of tabloids are dedicated to sports and are too often filled with poorly written articles devoid of substance. There are no Red Smiths active today. Smith was one of the most widely read sports reporters for fifty years and won a Pulitzer prize for distinguished commentary in 1976. Fast forward to the present and I often cringe when I read mainstream journalism dedicated to sports. I read a particularly bad article in Sports Illustrated by Jeff Bradely. He wrote “Super Bowl Winning Ravens LB O.J. Brigance  Embraces his ALS Fight”. I knew the article would be bad after reading the title. The military metaphor sets up an unhealthy dichotomy that Susan Sontag wrote about long ago in Illness as a Metaphor. Those that win their “battle” with cancer are heroes. They are lauded as survivors. Those that are defeated by cancer are losers. They were not strong enough to win. They are weak. They did no try hard enough. They should have found an obscure cure because that is what winners do.  Obviously Mr. Bradely has not read Sontag’s work.

It is apparent Bradley has accepted the idea that anyone with ALS that is on a vent and works is a person to be lauded. Bradely wrote: “its not often that Brigance, a Super Bowl winning linebacker for the Baltimore Ravens who was diagnosed with ALS, isn’t smiling. Even as he’s lost the ability to walk and speak over the last eight years, Brigance, 45, seems to have never stopped smiling. He shows up to work five days a week as the Ravens senior advisor for player engagement, showing all those around him what it means to push on”.

Even for sports reporting this is over the top. Contrast this Super Crip like existence with a man who has a typical body. How many men 45 years old are applauded for showing up to work five days a week. Oh, how inspirational! Better yet, Brigance is smiling all the time! Oh my, be still my heart. A crippled man is happy, works hard and is married. This sounds pretty ordinary to me.

Another smiling passage from Bradely:

“Brigane’s courage is on display a the Ravens complex each day he shows up to work. For as much as ALS has taken away from the man who made the very first tackle in Super Bowl XXXV—a blow out win over the Giants Brigance seems to never stop smiling. Ray Lewis, the Ravens former defensive leader and a man who took pride in his ability to motivate others, did not shy away from using Brigance as an example of extreme mental toughness.”

Again, would a bipedal man be characterized as having “extreme mental toughness” for simply working? Not a chance. It would be a demeaning characterization. Yet it is okay to give praise to a person with a disability who is doing the ordinary. Brigance is also modest. “In his typical self-effacing way, Brigance downplays the role he plays with the Raven”. No article is complete about a man with a disability until he is deemed inspirational. In Ghandi like fashion Brigance dismisses his inspirational existence and states that it is his wife of 22 years who is inspirational.

Please do not take my words as criticism of Brigance. He is an ordinary man who happens to have ALS.  An ALS diagnosis is devastating because most people die within two to five years. Brigance is luckily an exception  though I am sure he does not feel lucky. He appears to be well aware that he has profound advantages over others with ALS. Brigance is quoted as stating:

My first realization was the platform I had been given as a professional athlete could be very advantageous to raising awareness about ALS. Secondly, I discovered the exorbitant costs to live with ALS, even if one would choose to take life prolonging measures, such as going on a ventilator. That is when we decided to raise money to help PALS (people living with ALS) and their families to purchase the durable equipment and services to help with day to day living with ALS. We have awarded communication devices, wheelchairs, home generators, built ramps and provided home nursing care. All with the purpose of helping PALS have the very best quality of life possible. I am very proud of what we have accomplished, however there are so many others who need help. That is why we will continue to seek support from everybody we can touch to address the need.

This is where I get frustrated. Bradely’s article appeared in Sports Illustrated—a magazine that is widely known and respected. Yet he does not in any way delve into the inequalities in accessing the required medical equipment that makes life possible with ALS. Why do people go into deep debt, especially after they start using a vent? Are those without financial resources given the same options as those privileged such as Brigance? I doubt it. More to the point, why does health insurance not cover all the medical needs of those with ALS and a host of other degenerative neurological conditions. I commend Brigance for his level of awareness and dedication to helping others with ALS.  I merely wish more people would ask the basic question why.  Why do people with severe disabilities go into debt? Even more sobering, do some people with ALS choose to die and not go on a vent because they will be an economic burden on the family.

Disability, Sexuality and the Censorship of Atrium

For the last 37 years, I have routinely been asked, “Can you have sex?”  I have thought a great deal about why bipedal people feel free to ask me if I can have sex.  There is no doubt that, as a paralyzed man, my body is perceived as freakish. Despite 40 years of progressive legislation designed to empower people with a disability, negative stereotypes stubbornly cling to people with a disability.  One of those stereotypes involves sexuality. People with a disability are viewed as having spoiled identities and bodies.  We are perceived to be inferior, physically deviant, and asexual. Despite the development of a substantial literature on sex and disability, not much has changed since Tom Shakespeare published “The Sexual Politics of Disability” twenty years ago. Disability and sexuality are still treated as incongruous, if not mutually exclusive.  

The intersection of disability and sexuality is not my area of specialization. Indeed, I rarely write about sex. I have always preferred to have sex than to write about it.  The intersection of disability and sexuality has been at the forefront of my mind recently, however, because last year a controversy erupted over the publication of an essay I wrote in Atrium, The Report of the Northwestern Medical Humanities and Bioethics Program. In my essay, entitled “Head Nurses,” I wrote about  the bad girls of rehabilitation identified as the “dick police” and “head nurses.”

The “dick police” were young nurses who taught men how to catheterize themselves. “Head nurses” were young women who performed oral sex on certain hard working patients, if they so desired. Shortly before leaving rehabilitation, I received a visit from a “head nurse” who performed oral sex.  I received that visit because we were close, and because she knew that, despite repeated requests, I had been given no information about sex post injury.     

My essay appeared in a special issue of Atrium, the theme of which was “Bad Girls,” guest-edited by Alice Dreger, a historian of anatomy. Prior to publication, I worried that my essay might upset people with limited knowledge of the gritty reality that people with a disability routinely experience.  I forged ahead, though, because, as I wrote in the essay: “my experience constitutes a lost part of medical history.”

What I never imagined was that my essay would prompt an act of blatant  censorship by Northwestern University. Shortly after the “Bad Girls” issue was released, Northwestern University Feinberg School of Medicine Dean and Vice President of Medical Affairs Eric Neilson objected to the publication of my essay. Absurdly, my essay was characterized as “pornographic.”  In response to this criticism, Atrium’s editor-in-chief, Katie Watson, a faculty member in the Northwestern Medical Humanities and Bioethics Program, decided to take the entire journal off line. She told Dreger that she would not allow just one issue to be singled out for “special” treatment.

But Watson made no public announcement that Atrium had been taken off line. Now, 14 months later,  Atrium is back online as of May 19, 2015.  This is an important though belated action and in no way diminishes the fact the Bad Girls issue of Atrium was censored for over a year. During the 14 moths Atrium was censored Alice Dreger, who repeatedly objected to the censorship, made the whole “Bad Girls” issue available at her personal website: http://alicedreger.com/Bad_Girls

 I will return to the core issue of censorship shortly, but first some additional background is necessary. Prior to publication, I asked people I respect to provide comments.   A good friend and a long-time-paralyzed guy like me read a draft of my essay. When done, he burst out laughing and told me, “I think some people are going to freak.” More than one colleague read  a draft of my essay and commented “Are you sure you want to publish this? Parts of this are troubling.”  I clearly underestimated the fierce response my essay would prompt. In retrospect I should have discussed the history of nursing and feminism. I did not do so because I felt it was beyond the scope of my essay.

While most people liked what I wrote, a small number of scholars sent me scathing email. Two Catholic bioethicists deemed me a misogynist and a liar. They published a blog called “Blowing Up Bioethics: A Response to Atrium’s Bad Girls and Head Nurses.”  Link: http://www.bioethics.net/2014/04/blowing-up-bioethics-a-response-to-atriums-bad-girls-and-head-nurses/  In this essay, they charged that “the Head Nurses article perpetuates views of women, sexuality, and professionalism that best serve male power, rather than the power of women.” They argued that “the ‘bad girl’ theme of the Atrium issue allowed for an article that imported expectations of female subservience.”

Initially, I was taken aback by this gross mischaracterization of my essay, but the more I pondered the vehemence of their reaction, the more I thought of an article I had recently read in the Atlantic entitled “Disabled and Fighting for a Sex Life” by Katharine Quarmby. Link: http://www.theatlantic.com/health/archive/2015/03/sex-and-disability/386866/  Quarmby maintained: “Disabled people’s sexuality has been suppressed, exploited and, at times, destroyed over many centuries. It has been seen as suspect, set apart, and different from the sexuality of non-disabled people.”  Because I had honestly related my experience in “Head Nurses,” I was charged with being a threat because I refused to set aside my sexuality and  candidly acknowledged my sexual desire and pleasure. In so doing, I not only asserted my humanity, but undermined the myth that people with disabilities, especially paralyzed men, are asexual or unable to satisfy their sexual needs.

My essay is not “a worn-out and objectifying trope” but a forthright step in a decades’ long effort to reject the negative assumptions about disability and sexuality. Progress has been made, but as Shakespeare demonstrated twenty years ago, the interaction of disability and sexuality is tied to some powerful and negative metaphors. The trope we should be rejecting is not the allegedly “pornographic” and “misogynistic” oral sex that in fact took place in a hospital decades ago between two consenting and mutually-affectionate adults, but rather the trope found in D. H. Lawrence’s Lady Chatterly’s Lover, in which Lady Chatterly can  be satisfied only by a virile gamekeeper because her husband was paralyzed in the war.

The physical, emotional, and social abuse of persons with disabilities, and the denial of our sexuality, form a disgraceful and disturbing history that is not well known.  Few know about “the ugly laws” that restricted the movement and social integration of persons with disabilities, and even fewer know about the devastating consequences of the Eugenics movement that legalized the forced sterilization of persons with disabilities.  It was not until the 1960s, when disabled veterans returned paralyzed from the Vietnam War, that the general public was exposed to the idea of disability rights.   Building on 40 years of legislation designed to empower people with a disability, I was among the first generation of people in the late 1970s with a disability who expected to resume a typical life post disabling injury. That typical life included sex, family, education, and employment.

Tuppy Owens, a sex therapist and author of Supporting Disabled People with Their Sexual Lives, believes that people with a disability must fight for their “sexual citizenship.”  But sexual politics is not yet a significant part of the disability rights movement. It should be.  The fact is that people with disabilities encounter discrimination on multiple fronts, and that includes barriers against being empowered to explore their sexuality. Taking down the “Bad Girls” issue of Atrium, and treating my essay as if it was pornographic or misogynist, is an act of censorship that reinforces the social isolation of persons with disabilities and falsely affirms the inability of persons with disabilities to establish intimate relationships.  It is an act that is completely incompatible with the truth and with the central tenets of academic freedom. Although the censorship ended after 14 months it remains a shameful act that should embarrass those at Northwestern University who purport to value that freedom.

            In terms of sexuality, not much has changed with regard to the sexual options open to people with disabilities.  The denial of one’s sexual identity and of the physical pleasure sex provides is potentially devastating to any individual. My essay “Head Nurse” unsettles conventional social norms. I, as a paralyzed man, am not supposed to be sexual, and I certainly am not expected to acknowledge receiving sexual pleasure in the form of oral sex. To deny the realities I wrote about in my essay is to deny the truth – and it is a truth people should know.

Katie Watson, in an email of April 2, referred to the controversy my essay created as the “Atrium drama.” But there is more than just the denial of sexuality and disability at play here. In recent years, university medical centers, like the one at Northwestern, have too often been consumed by corporate branding. Their self-presentation focuses less on the realities of patient care than on the projection of feel-good stories meant to attract well-insured and paying customers.

Watson admitted that this concern with “branding” played a significant role in Neilson’s reaction to my essay:

Our administration views Atrium as a “Northwestern Medicine” publication. I disagree with that characterization (it’s a med school publication) but just as the “Bad Girls” issue came out the med school & hospital entered a branding agreement to have a single identity that raised new sensitivities. As a result, they were very worried that publication of your article in what was newly considered a NM publication might suggest our institution/hospital does not value nurses, or that it condoned sexual relationships between patients and providers in the hospital. I strongly disagreed with their assessment, and I took every single back issue of Atrium down in an act of solidarity, because I refused to single out any one author or issue.

Watson went on to explain Atrium could not go on as it once did. Watson felt bad and asked for a favor:

Until this ridiculous situation is remedied, when people click on your article title (I’m reconfiguring format so articles can be accessed individually) would it be okay with you if they got a message with your email saying to contact the author directly for a copy?  (And we’d send you a pdf of your article individually if you don’t already have that.) This goes without saying, but as a private citizen with free speech rights protected by the First Amendment you can respond to those requests however you like.

I was horrified by Katie’s message.  This was censorship at the bequest of a desire to brand a hospital. I replied:

Thank you so much for your explanation re. Atrium. Needless to say, and for the same reasons that you state, this is unacceptable. However, to help you out of your bind, I will agree with your "solution" as a tentative step while formal measures are taken to protest the University's censorship of my article. But I have one important qualification: Where my article would ordinarily appear, in addition to the reference to my email, the site must state: "This article has officially been censored by Northwestern University. Therefore, anyone wishing to read it should email me at wjpeace9@gmail.com"  

            My experience with Atrium and the censorship of my essay and other scholars who made contributions to the issue edited by Dreger makes me long for the old days. As I wrote in my Atrium essay, “I am not suggesting we return to our primitive past,” but when corporate branding distorts and hides the truth it presents far more problematic ethical conundrums than my decades’ old experience.  Obviously, sexual relations between patients and health care professionals is inappropriate.  I accept this as a given. What I object to even more, though, are poseurs in white coats who are dedicated to branding medical institutions by censoring legitimate scholarship and attempting to erase the lives and experiences that they deem embarrassing.