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Friday, July 3, 2015

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.

Friday, June 26, 2015

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.
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. 

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. 

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

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: 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.

Tuesday, June 16, 2015

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 (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.”

Friday, June 12, 2015

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.

Thursday, June 11, 2015

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.