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Saturday, June 20, 2015

Katie Watson on the Atrium Controversy and Censorship

I promised Katie Watson, editor and founder of Atrium, that I would publish anything she had to write about Atrium. I further promised that I would post what she sent on Bad Cripple without change. Below is word for word what Watson sent me. 


Dear Bill,

I’m surprised and disappointed you chose to make public a personal correspondence in which, out of respect for you and our years of positive professional interactions, I shared the confidential details of a difficult situation. But following your lead I will respond in a similarly public way – both to the topics you raise, and to more general questions about the current status of Atrium.

As you note, in my role as Editor and founder of Atrium, I refused to comply with an administrative desire to single out your essay. I did not agree that publishing it was a mistake and therefore refused to apologize, and I steadfastly defended your work and that of your guest editor. Instead of allowing your essay to be treated differently, I chose to temporarily take the entire Atrium back catalogue off-line until things could be sorted out. Your article was not the only topic on the table last summer— in a time of institutional change, complex interpersonal dynamics, and new fiscal austerity, Atrium’s future and several other large issues of great concern to our Program’s faculty and mission were also in question.

So I was sorry to learn from your blog for the first time that my email "horrified" you. I asked your thoughts about a potential temporary work-around because addressing all these difficult topics in turn was indeed a long process, and authors from earlier issues, as well as your guest editor, were understandably eager to have their work back up. But I knew it was also important to you that your essay was accessible through the Atrium website (not just Dreger’s), so I was looking for a way to honor all these feelings of urgency.

What you wrote on your blog (5/20/15) about “the denial of sexuality and disability” is powerful and incredibly important. That’s one reason I was glad my Program paid for you to fly to Chicago last February to speak about this topic in a forum open to the entire medical school after the negative administrative response to your essay. I thought the way you reclaimed a lost history and honestly shared the experiences and emotions you had as a teenager was a gift to all Atrium readers (myself included) who aren't part of that world. I never heard the term "pornographic" applied to your piece, but "the fight for sexual citizenship" is a wonderfully useful paradigm. Those from what might be termed "majority sexualities" can indulge in the luxury of silence, but self-preservation forces the discounted to speak up about sex in ways that are sometimes less than genteel, and for that I applaud you.

That said, I never heard anyone at Northwestern speak the objection you name. That doesn’t mean it might not have been a factor for some – discrimination by the educated is rarely open, and sex does seem to be a common denominator in recent academic controversies.

The concern I did hear was about the depiction of sex between clinicians and inpatients, so perhaps it’s helpful to name the theme of provider-patient sex as another way your story “unsettles conventional norms.” It is no justification for censorship, but some react to this topic with what I interpret as a kind of "incest horror." A taboo against provider-patient sex in the hospital provides clear role boundaries for those engaged in intimate care in closed shared spaces, and can protect both from exploitation. In your blog post you say, "obviously, sexual relations between patients and health care providers is inappropriate," but that sentiment is not clearly present in your essay. (I don't see this as an error; no essayist needs to dilute his or her point of view in an effort to inhabit every other perspective out there.) This may explain why I spent over an hour on the phone with a nurse who has made significant professional contributions to disability rights, and yet was shocked Atrium would publish a piece she viewed as both insulting and threatening to women in her profession. Several other women who aren't nurses told me they were afraid nurses might (and in their view, should) read it as degrading. In contrast, an acquaintance who is the former Dean of a Nursing School sent me an unsolicited email saying she thought the "Bad Girls" issue of Atrium was spectacular. When I asked her thoughts about your piece specifically, she replied, "[N]urses can be very touchy after all they've been subject to by way of stereotype. It gets in the way sometimes of 'hearing' larger points." Again, none of this should prompt suppression. Mixed reactions are the norm in academic work, and I was happy to have all these exchanges because they represent the diverse Atrium readership I've come to know and love.

When the objection to your essay arose, I understood myself to be defending not just you and all past Atrium authors, but also future authors – all the challenging, illuminating voices just as wonderful as yours that I knew I wouldn’t be able to publish in the future if our Program’s larger issues weren’t resolved positively. So my view that the journal’s future and past were linked, and that this topic was also linked with my Program’s overall strength, accounts for part of the delay. It would be fair for you to say that the future of the journal that published your voice or program behind it is not your concern; that people with disabilities are tired of being asked to wait. But in my role as Editor, I thought it was my responsibility to take the time necessary to pursue all these goals together. For example, when the objection to your essay arose I was in the initial phase of assembling the next issue, which is reviewing proposals. (Atrium first invites proposals responding to theme, not full articles.) But before I could move forward with that step, the medical school required me to allow a Vetting Committee to review my editorial choices and veto them if they were perceived to conflict with other institutional interests. (It was not an academic Editorial Board, as has been incorrectly reported elsewhere.) A week after a disheartening meeting with this group, I learned Atrium’s print budget had been eliminated, and I cancelled that issue-in-progress.

The good news is that, over the course of nine years, Northwestern's medical school gave Atrium’s readers the gift of spending more than $200,000 (and a portion of my time/salary) so the Medical Humanities & Bioethics Program could produce, create, and distribute free of charge (in print to thousands and to more through our website) a publication which many tell me is a forum unique in our field and invaluable resource—and despite this financing of a non-peer reviewed publication, the school never tried to control any content until this essay. The bad news is that, in a time of change, my school stumbled. The question is whether we can right ourselves and move forward.

Months ago my Program Director gave me permission and authority to “take Atrium private”—that is, to personally sell it to another institution or journal publisher—if in my sole discretion that’s what I thought was best for the publication. He did this in recognition of our changed environment, our University’s broad protection of faculty member’s intellectual property, and out of respect for my role as creator and sustainer of the publication. (Atrium has no “editorial team,” as has been incorrectly reported elsewhere. I’m thankful for the wise, generous input I’ve always received when I’ve asked my colleagues for help, but formally speaking Atrium has been run by this one-person editorial staff since 2005, with the exception of two times that colleagues asked if they could guest edit an issue and I happily agreed (#10 Belling & Czerwiec; #12 Dreger). The wonky “every 9 months” publication schedule was because that’s as often as I could fit the work in on top of a full load of my own teaching and scholarship.)

But I have not yet acted on my option to take Atrium elsewhere because I think it’d be best for my Program to continue to be represented by, as you put it Bill, this “eclectic, high-quality academic journal known for pushing the edge.” I hope the medical school and University will come to agree, and we can return to Atrium’s prior practice of full academic freedom and zero editorial interference. That’s why I was willing to be what may have seemed from the outside as “unreasonably patient” with this process—because education, collaboration, and cooling off take time, and because the Atrium question is part of a larger fabric of institutional change that isn’t yet finished. I work with good people in both the medical school and the hospital, and I remain hopeful. But if I become convinced Atrium can no longer move forward with integrity here, I will drop the publication’s MH&B and NU affiliations and move it elsewhere, or I’ll throw a party for the terrific run it enjoyed and end it.

The years I spent as a public interest lawyer before becoming a professor have led me to see analogies between institutions like universities, academic hospitals, and the ACLU. The pursuit of multiple important goals sometimes causes internal conflicts of principle (eg some attorneys want to fight abortion clinic harassment and others want to defend picketers' First Amendment rights), and sometimes leads to tension with allies (eg a gay rights group is unhappy the ACLU has chosen police brutality as its lead issue in a given year), but over time it usually results in positive progress on all fronts. And sometimes good institutions make mistakes. Apologists excuse them. Gadflies punish them. Loyalists pursue restorative action to remedy them.

I'm truly sorry this has been an unpleasant experience for you, Bill. I wish you all the best in your future work, and I thank you again for your important contribution to Atrium.

Katie Watson, JD
Editor, Atrium
Assistant Professor, Medical Humanities & Bioethics Program

Northwestern University, Feinberg School of Medicine

Thursday, June 18, 2015

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: 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: More importantly read her blog Star in Her Eye. Link: 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: 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.

Tuesday, June 16, 2015


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: 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 (FIREwrote 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.”