Boston Then and Now

I have decidedly mixed feelings about Boston. I vividly recall flying to Boston as a kid in large part because it was the first plane trip I took alone.  I do not recall much of the trip aside from the fact my sister lived in a really old house in Marblehead. The trip was significant because it ignited a lust for travel that has lasted a lifetime. I sourly recall the Boston Bruins breaking my heart many times as a Ranger fan. As a boy I tried very hard to convince myself that Brad Park was better than Bobby Orr--an effort that failed every time. Worse, my brother-in-law Mike  liked the Bruins and teased me a good bit every time they beat the Rangers and won a Stanley Cup. As an adult, I remember Boston for a few romantic trips I took with my now ex wife (I am not sure if this is a good or bad memory). What I remember the most about Boston is an over night trip I took two years ago when I,  along with many other disability activists, testified before the Massachusetts legislature's joint Committee on Public Health in opposition to H-1988 which would have legalized assisted suicide in the state. I wrote about this trip in December of 2013.  Link: http://badcripple.blogspot.com/2013/12/i-testified-in-boston-problematic-trip.html Much went wrong on this trip. My testimony was terrible--I am quite good at public speaking but really screwed up that day. I had plenty of excuses. I had a sleepless night, the room where testimony was given was hot, it snowed all day and I lost my gloves. The drive home was twice as long given the fact the roads were really slick with snow and ice. Add in the city of Boston does a terrible job removing snow from the sidewalks. Despite all this the city looked great.

 
Boston looks great today. But, there is always a but, I would prefer the snow and cold. Thanks to a deeply respected colleague who has housed me for an extended period of time  I have been able to enjoy the city. How I miss the vibrant nature of city life and all it entails. My beloved labrador Kate loves city life too. Lots of people and stimulation for her. What I have enjoyed the most is the Boston Common. The Common, not commons, looks quite different today.

The summer heat has radically altered my schedule. I wither in the heat. Wither is being kind. I suffer in the heat. I am at a high risk for heat stroke. I take heat warnings seriously. To adapt and avoid the heat this morning Kate and I headed out the door at 6AM. I was instantly taken back in time to when my son was a baby and I lived in the heart of Manhattan. Although I had lived in the city a long time I had never seen the city come alive. My son changed that upon delivery (pun intended). Delivery trucks abounded, men were power washing the sidewalks, trash was being picked up, portable toilets were being removed from the Boston Common, tree men were grooming the tress etc. All this was wondrous to Kate--especially the portable toilets. Her nose was seriously out of joint and had a thrilling morning. As I enjoyed the city coming to life I began to wonder. Is disability related access part of this norm? Despite lots of brick sidewalks the city of Boston is quite accessible. The subway, the T, is largely accessible unlike most cities across the USA. I have really enjoyed accessing the T. I have never used the subway or train on a regular basis. My colleague has been kind and patient as I learned the system. It is amazing what bipedal humans take for granted but here I digress.

As I have navigated the T I have been struck by the large number of people with a disability out and about. I have seen a great number of people using a wide array of wheelchairs and scooters. I have observed two guide dog teams that stuck out to me as both dogs were German shepherds.  I am not suggesting Boston is ideal in terms of access. Far from it, the city struggles badly during winter and lousy snow removal forces people with a disability to be house bound for long stretches of time. This is utterly unacceptable. And I return to wondering. Why is a lack of access acceptable? Why do the elevators in the T smell so bad the acidic smell of urine hurt my eyes and lungs? Of course this is a result of the homeless using the elevator as a safe toilet--another reality of city life unacceptable. What a world we live in and I wonder why Americans embrace capitalism;but I digress again.

One of the highlights of my visit will be meeting Lisa Iezzoni for the second time. She is a Boston based physician/scholar who is writing about how inaccessible hospital are to people with a disability and the resultant health disparities. Yes, hospitals remain grossly inaccessible both physically and culturally 25 years post ADA. This problem is ignored and to the best of my knowledge Iezzoni is the only person doing research on this subject matter. I find her writing far too polite. This is not a criticism. She publishes in first tier or prestigious journals and is providing the bed rock scholarship that can enable further work and subsequent activism to take place. What Lezzoni has accomplished to date is critically important. Bioethicists write about the coming "tsunami" of Baby Boomers who are aging into diverse disabilities. Our health care system is woefully unprepared for this population who will be accessing the health care system in vast numbers. What is clear in Lezzoni's work is what physicians and health care professionals are reluctant to acknowledge: health care disparities are rampant. A quick glance at the statistics for people with a disability, especially women with a disability, reveal routine screening such as mammograms and pap smears,  are far less likely to take place. The statistics in fact are quite grim. Link: http://content.healthaffairs.org/content/30/10/1947/T1.expansion.html

The lack of access to health care I would argue is the most important public health care problem this nation has ever faced. Frankly, getting in the door of a practicing physician by itself is deeply problematic. This is not an isolated or regional problem and is in fact a growing problem. The reasons for this refusal is not what physicians claim--it is too expensive to make their offices accessible. Most offices simply state the office is not accessible nor can they suggest a physician or office that is accessible. I have been down this road many times.  I find this distressing because of the ignorance involved. At issue is civil rights. My civil rights are being violated a central point very few grasp.  Getting through the gate keepers is virtually impossible and appears to me to be the typical policy of most physician offices. The Boston Globe wrote about this two years ago as have many other newspapers.

More than one in six Boston doctors offices refused to schedule appointments for callers posing as disabled patients in wheelchairs, researchers at Baystate Medical Center reported Monday in a study of specialty practices that highlights obstacles to routine medical care.
Legal specialists say the practice violates a federal law requiring that people with disabilities have access to appropriate care.
Callers turned away by physicians in Boston and three other cities were mostly told the offices lacked an exam table that could be raised and lowered or a lift for transferring a patient out of their wheelchair. In some cases, practices were located in buildings inaccessible to people in wheelchairs.
Gynecologists in the four cities had the highest rate of inaccessible practices, with 44 percent informing patients that they needed to seek a specialist elsewhere. The findings were published in the Annals of Internal Medicine.
“Many doctors may not be aware that they need to see patients with disabilities,” said study leader Dr. Tara Lagu, an academic hospitalist at Baystate in Springfield and an assistant professor at Tufts University School of Medicine. “I’m shocked every time I hear from patients in wheelchairs that they can’t get an appointment with a urologist or gynecologist or that the doctor wants them to come in an ambulance for transfer to an exam table by an emergency medical technician.”
https://www.bostonglobe.com/lifestyle/health-wellness/2013/03/18/boston-specialist-physicians-can-accommodate-disabled-patients/jl0X744wsMoZVSUiGU4JIK/story.html

Here I relentlessly return to my observation about Boston as a city coming alive well before business hours begin. Why is wheelchair access and so called "reasonable accommodations" for all people with a disability not the norm? Why is not a central part of a hospital as an institution coming alive.  I would suggest the most basic reason for a lack of access is simple--we people with a disability are not in positions of power. We are not present when decisions that can profoundly alter our life are made. Hence I harken back to the slogan "nothing about us without us". As I age and need to access health care on occasion the more I find the slogan "nothing about us without us" all too apt. This is without question not a medical concern but rather a social problem. Not much has changed since Robert Murphy made the very same point in his book the Body Silent.

Who Rode Out the Storm and Why

 In the event of a disaster I have no doubt the lives of people with a disability hold little value. I think about this every time I access mass transportation. I silently acknowledge that should something go disastrously wrong not a soul will help me. There is no calvary for people with a disability. We are expendable. Based on research conducted over the last year there is no doubt in my mind FEMA and other federal or state organizations place people with a disability at the bottom of the priority list. Multiple practical and social reasons exist for this devaluation. Disaster studies make for scary reading especially if you have a disability. We will be the last, and I mean the very last, people saved. Pets have a better chance at survival and rescue during a disaster.

The last sentence above is not hyperbole. It reflects the experience of people with a disability during Hurricane Sandy, a storm that swept up the east coast and caused a stunning amount of damage. For me the lasting legacy of Sandy is one of human rights. The question to emerge from Sandy is sub basic: do people with a disability have the right to be rescued in event of a disaster. I would answer in the affirmative. I expect to be saved if a disaster occurs yet I know this will not happen. This is the gulf between the law and life as we people with a disability experience it. The mere fact the right to be rescued is a question indicates how devalued the lives are those with a disability.  In "The Right to be Rescued: Disability Justice in an Age of Disaster"  Adrien Weibgen wrote:

disasters are socially constructed. How we choose to respond to the urgent human needs that arise from large-scale weather events determines the degree to which these events become “disasters.” As disasters become more frequent, social inequalities will be thrown into sharper relief, and the consequences of such inequalities will become increasingly dire. Communities will be forced to grapple with two essential questions: in preparing for disasters, how “ready” is ready enough, and to what degree should identity and social status determine who is put in danger, left in misery, and left to die? Link: http://www.yalelawjournal.org/article/the-right-to-be-rescued

Who is left to die? Who will suffer? These decisions are made in the heat of the moment and too date have not been adequately addressed. This has led disaster planers to ask how can we do better. How can we rescue people with a disability in the event of a disaster. This represents a significant shift in disaster management. We are not blaming people with a disability for riding out storms. The fact is there is no place to go. Shelters in New York City were largely inaccessible.  Add in the majority of people with a disability live on the margins of social and economic oblivion and it is hardly a surpise most chose to ride out the storm.

What is desperately needed is what does riding out the storm entail? This is poorly understood and tapping into the reasoning of people has proved illusive to researchers. Thus I am imploring those who rode out the storm to take the survey below. Time is tight so I implore people to take the survey as soon as humanly possible. Link below

https://www.surveymonkey.com/r/?sm=TlGD2FwTeFYWkmvpwy3zSYOsAmnps5dWfzS56xrmavw%3d

July 4th is Not For All

National holidays will always resonate with me.  July 4th, Memorial Day, Thanksgiving, Christmas, and President's Day etc. all prompt the same memory--severe illness and hospitalization. Name a National Holiday and I can recall being extremely sick. Growing up my siblings teased me about my penchant to get sick at the worst possible time. I did not do this one or twice. I did it a lot. So pardon me for not getting over excited about July 4th or any other day we as a nation celebrate. I also heard too many horrific and overly nationalistic speeches when my son and I were involved in the Boy Scouts. The end result is I get pretty cranky in the days leading up to July 4. This year my mood is especially grim because on July 26 the ADA will celebrate its 25th anniversary. As I looked out my window in the pre dawn light I thought about the ADA. Why do people with a disability remain unequal?  Why do I feel so estranged from other? 

I pondered the above for quite some time. Then I read Stephen Kuusisto's blog post "Disability at the 4th of July". Link: http://stephenkuusisto.com/2015/07/03/disability-at-the-4th-of-july/ Kuusisto recalled the many people with power that vigorously opposed the ADA. He wrote: 


Yes, the ADA is now grown up. Her longevity is remarkable because boy oh boy, did she ever have some enemies, especially when she was just a kid. (Remember Clint Eastwood? How about Antonin Scalia?) Yes, there was a considerable cast of characters (who we can also call a person) who ardently wished to kill ADA in her cradle. I, for instance, have a great memory. I recall Tom Delay saying on the floor of the US Senate in 1990:  “The cost to the nation and the economy is going to be dramatic. This goes way beyond the bounds of reason.” Or how about noisome blab from the National Review:  “Under the guise of civil rights for the disabled, the Senate had passed a disaster for U.S. business.” ADA’s enemies proposed that euthanizing the child was really for the best. Notice the use of the phrase under the guise of civil rights, as though equal opportunity and civic life are, after all, really, just a fiction, or, to put it more succinctly, they’re a true story only for some. Perhaps the most vigorous opponent of ADA was (and remains) the Chamber of Commerce, which even today, bloviates that accessibility guidelines kill small businesses. (In order to believe this, its crucial to think that “the disabled” are insufficient customers, who live alone, who have no families and spouses and children who also shop.) 

Kuusisto is too kind to those that opposed the ADA. Tom Delay was a bigot. Clint Eastwood, also a bigot, went on the make Million Dollar Baby, the most widely watched disability snuff film.  I love the line above "ADA's enemies proposed euthanizing the child was really for the best".  Today, with prenatal testing people with Down Syndrome and Spina Bifida are simply not born--no need for euthanasia; though we must try to pass assisted suicide legislation just in case we live too long and, gasp, acquire a disability. Simply put, the ADA did not destroy small or large businesses. The real trouble is indeed the Chamber of Commerce. It is my neighbor. It is your colleagues at work. It is the carpenter, tailor, sales person who helped you pick out an item clothing, your boss, a bus driver etc. The reason the ADA has failed culturally is simple and complex at the same time but shares one thing in common: ignorance, willing ignorance.  Major Owens, a Democrat who served from 1987 to 2003 in the U.S. House of Representatives, noted: 

There's a kind of sick security some people get out of keeping away from people with disabilities. They are running away from any situation that's not totally pure and all-American and that requires them to do any thinking.

People choose to remain ignorant when it comes to disability. People choose not to think. Symbolically disability remains a symbol of the fragility of the human body. We people with a disability are an ever present reminder that life can go askew at any given time. The response was and remains fear--out of sight out of mind. We created institutions and enacted laws to segregate people from all typical others. We choose not to think about disability. Oh, how many times I have heard "Sorry we never thought about wheelchair access". Great, that is the perfect and most polite way to insure a person with a disability will be excluded. This brings me back to July 4th. My little town is having fireworks. I love fireworks and yet I rarely if ever attend a fireworks show. I do not attend because in terms of wheelchair access there will be no accessible bathroom (sorry, we did not think of it). Will there be a safe dimly lit trail to where a person with a disability can enjoy the show (sorry we did not think of it). Will there be a safe way to get to and from your car (sorry we did not think of it).  Am I being too harsh? No. According to the National Highway Traffic Safety Administration fatalities related to car and pedestrians is at a historic low point.  There is one exception: people with a disability. The number of people hit by a vehicle increased last year. Why? Blocked curb cuts or lack of a curb curt that forces a person such as myself into the street. Hence my concern about safety post fireworks. I am sure you can guess why there is a blocked or absent curb cut. "Sorry we didn't think of it".  Ignorance can and does kill people with a disability. Cheery thoughts for July 3. No worries, I will put only fake happy face tomorrow so others will feel comfortable and not think of disability.

Patient Care is Incompatible with Branding

The branding of hospitals, rehabilitation centers, and out patient clinics from a revenue generating perspective has been and remains successful. The downside to selling a brand is that patient care is secondary to profit. Do not misunderstand me. There are without question dedicated and excellent health care workers in every hospital and rehabilitation center in the country. Physicians exist who deeply care and enhance the quality patient lives and can help shape an independent future. There are countless wonderful physical and occupational therapists that teach people post spinal cord injury life lessons. This was true in 1978 the year I was paralyzed. It is equally true today nor is such dedication limited to those that work with people who experience a SCI. For example, I vividly recall a speech therapist working with my father after he had a stroke. My father was depressed and did not want to talk. This therapist asked me "what excites your father?" I suggested she ask and talk about horses (my Dad owned thoroughbreds). To communicate about the horses one needs to be able to read the Racing Form, the Bible of thoroughbred racing.  And that is exactly what she did--she established a thoroughbred vocabulary undoubtedly on her own time. As a result, my father's speech rapidly improved because he had something of substance to talk about. I could tell countless stories about health care professionals who went above and beyond what any person could have expected.

I cannot stress this enough: my concern with branding has nothing to do with health care workers that provide primary care but rather the institutional system in which they work. The prime flaw as I see it today with physical rehabilitation post spinal cord injury is the length of stay (LOS). A vast literature exists on LOS but the general consensus is post SCI a person circa 2015 receives about 55 inpatient days at a rehabilitation center. There is no question LOS has decreased significantly.

The decrease in rehabilitation duration is found for all SCI impairment categories. For patients with incomplete paraplegia, median LOS decreased from 68 to 29 days, and it was reduced from 84 to 42 days for patients with complete paraplegia. Median LOS was reduced by two-thirds for those with incomplete tetraplegia (from 104 to 34 days), and almost as much for patients with complete tetraplegia (from 142 to 59 days). The pressures of managed care, as much as improvements in medical and rehabilitative expertise, seem to have driven the rehabilitation LOS declines.3

LOS is the tip of the proverbial iceberg for what constitutes rehabilitation today post SCI. What is deeply worrisome is the degree to which branding directly impacts patient care. My concern is what takes place during the 55 days one is an inpatient at a rehabilitation facility. What is the intensity of rehabilitation? What is the nature of the rehabilitation process? Does a patient get one on one care or are patients with a similar level of injury given group therapy sessions? The article I quoted above is the first study explore what happens during the 55 inpatient rehabilitation days one can expect to receive. Link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3066504/ It would be interesting to know how many hours were spent on various types of care but that only addresses issues directly related to the body and fits squarely within the medical model of disability. How, I wonder, does a young man adapt to SCI without any exposure or knowledge about disability?  Consider a young man, 18 to 25 years old, who experiences a sudden SCI. One day he is walking around like others and in the blink of an eye is paralyzed. How much time does this man have to adapt to SCI? Less than 55 days. This is not humanly possible. This is evidenced by the fact over 64% of people post initial injury are readmitted to the hospital within 30 days of being discharged. 

Rehabilitation centers are not shy about selling the idea they have a unique brand to offer potential patients. Indeed, google the words branding and rehabilitation and a plethora of rehabilitation centers will appear. Examples abound:

From Nebraska:

Madonna Rehabilitation Hospital, a national leader in rehabilitation care and research, has modernized its branding and developed a new website to help individuals quickly access accurate information.

In partnership with Lincoln-based marketing communications firm Thought District, the hospital began the rebranding process by researching the opinions of employees, former patients and families, as well as physicians, insurance providers and discharge planners.

Spinal Cord Injury Recovery

Our spinal cord injury treatment focuses on mobility.  Our patients who have spinal cord injuries have a unique desire to improve.  Our recovery program helps patients regain their independence and reach their maximum potential.  Since every injury is unique, the treatment plan is also unique.

The most efficient treatment options are the ones that fit the needs of each unique individual.  We begin Spinal cord rehabilitation after a patient is medically stable following a spinal cord injury (SCI).  A person who has a spinal cord injury may experience a complete or partial loss of motor functioning due to a severed or partially damaged spinal cord. The difference in SCI care at Eagle Crest Care Center spinal cord injury rehabilitation center is derived from our team of experienced medical professionals who implement active, individualized care plans that concentrate on improving a patient’s functionality and mobility.

Different treatments may include:

• Teaching patients how to maneuver a wheelchair in a store
• Prepare meals
• Bathing with little-to-no outside assistance.

Throughout the treatment and In the end, they gain more than just increased mobility, greater independence, and confidence to help them reach their recovery goals. At Eagle Crest Care Center, we have the unique opportunity to help SCI patients achieve a higher quality of life in a home-like, community-based environment that is designed to promote emotional well-being and physical comfort.

From Shepherd Rehabilitation, Atlanta

Shepherd Center is a brand that is fortified by the actions we take every day. It encompasses the services we provide, the respect and compassion we show patients, families and fellow employees, and the pride we share for working in an environment that is a Center of Excellence. Our brand

is reflected in the communications we develop, such as letters, hospital literature, faxes, forms, banners or T-shirts.

You play a crucial role in sustaining the strength of the Shepherd Center brand. The materials you create to communicate with internal or external audiences offer an opportunity to reinforce our brand positioning through consistent usage of the logo, color palette and typography.

Shepherd Center relies on individuals like you to serve as brand stewards. By understanding these concepts--and the applications specified in this document – you help protect the qualities and attributes important to our image.

I find the prominent branding of rehabilitation disturbing. One is not just a potential patient because  once admitted a person represents the hospital brand itself. Does this mean those individuals in need of inpatient rehabilitation that do not reflect the brand are turned away? Does the brand determine care and its focus? I think so. At issue is not just one rehabilitation facility but rather all of rehabilitation itself. Consider Kessler Rehabilitation in New Jersey, a high profile facility. Christopher Reeve went to Kessler in 1995 after he experienced a high cervical injury. Founded in 1949 with just 16 beds, by the 1980 Kessler had expanded exponentially. By 1990 Kessler had 322 beds, a dizzy array of out patient facilities, and was designated a "Model System". In 2003 Kessler was acquired by Select Medical.  Select Medical itself experienced signifiant growth in the mid to late 1990s and Forbes listed it as one of the best managed companies in the nation. Growth for Select Medical has been continuous.  Today, Select Medical owns long term acute care, inpatient medical rehabilitation, out patient physical therapy and contract therapy, and employees 30,000 people. Select Medical owns a "family of brands" in 32 states. As I read this history I thought, first, its founders must be extremely wealthy, and second, what a well greased skid an individual could find himself on. Acute care provided by the Select Medical. Rehabilitation provided by Select Medical. Out patient care provided by Select Medical. Perhaps even long term care (nursing home) provided by Select Medical.  All this could be done with the human being treated unaware one corporation determined their care. 

In terms of patient care post SCI, my concern is two fold: first, contract work is often short term. Employees come and go. I read many reviews written by health care professionals about working for Select Medical. To many state that productivity is more important than patients they treat. The work environment is stressful. Benefits are minimal. Concerns and suggestions to improve the therapeutic environment get lost between and facility and the corporation. Understaffing is common and many complained about the lack of raises if one remain at one facility for a long period of time. One former employee sourly noted "Most operations are run on shoe string budget which doesn't always jive well with patient care needs. Challenging to walk the tights rope of corporate expectations, patient care and staffing requirements. Maintaining morale and collaborative efforts between staff an management strenuous".  Second, with just 55 days of rehabilitation people who experience a SCI do not establish the sort of life long relationships I did. Rehabilitation is too short and precludes closeness with staff. Beyond time the pressure brought to bear on PTs, OTs, and nurses is a major problem. Patient care and a focus on profit are and always will be incompatible. Despite the great advances and hard work of health care professionals doing the hard work with patients I must say I yearn for the old days. There was no talk of cure or complaints about management. There was one expectation for health care workers and patients. Work hard and all shared the same goal: independence and a renewal of one's life with the dedication and support of staff. 

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. 

GUEST POST FROM PROFESSOR KATIE WATSON, EDITOR OF ATRIUM

(RESPONSE TO PROFESSOR PEACE’S BLOG POSTS OF MAY 20 & JUNE 16, 2015)

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

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.”