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Friday, May 22, 2015

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.

Wednesday, May 20, 2015

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:
 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:  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:  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"  

            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.