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Friday, May 22, 2015

Sports Illustrated and ALS as Inspiration

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

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

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

Another smiling passage from Bradely:

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

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

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

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


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

Wednesday, May 20, 2015

Disability, Sexuality and the Censorship of Atrium

For the last 37 years, I have routinely been asked, “Can you have sex?”  I have thought a great deal about why bipedal people feel free to ask me if I can have sex.  There is no doubt that, as a paralyzed man, my body is perceived as freakish. Despite 40 years of progressive legislation designed to empower people with a disability, negative stereotypes stubbornly cling to people with a disability.  One of those stereotypes involves sexuality. People with a disability are viewed as having spoiled identities and bodies.  We are perceived to be inferior, physically deviant, and asexual. Despite the development of a substantial literature on sex and disability, not much has changed since Tom Shakespeare published “The Sexual Politics of Disability” twenty years ago. Disability and sexuality are still treated as incongruous, if not mutually exclusive.  
The intersection of disability and sexuality is not my area of specialization. Indeed, I rarely write about sex. I have always preferred to have sex than to write about it.  The intersection of disability and sexuality has been at the forefront of my mind recently, however, because last year a controversy erupted over the publication of an essay I wrote in Atrium, The Report of the Northwestern Medical Humanities and Bioethics Program. In my essay, entitled “Head Nurses,” I wrote about  the bad girls of rehabilitation identified as the “dick police” and “head nurses.”
The “dick police” were young nurses who taught men how to catheterize themselves. “Head nurses” were young women who performed oral sex on certain hard working patients, if they so desired. Shortly before leaving rehabilitation, I received a visit from a “head nurse” who performed oral sex.  I received that visit because we were close, and because she knew that, despite repeated requests, I had been given no information about sex post injury.     
My essay appeared in a special issue of Atrium, the theme of which was “Bad Girls,” guest-edited by Alice Dreger, a historian of anatomy. Prior to publication, I worried that my essay might upset people with limited knowledge of the gritty reality that people with a disability routinely experience.  I forged ahead, though, because, as I wrote in the essay: “my experience constitutes a lost part of medical history.”
What I never imagined was that my essay would prompt an act of blatant  censorship by Northwestern University. Shortly after the “Bad Girls” issue was released, Northwestern University Feinberg School of Medicine Dean and Vice President of Medical Affairs Eric Neilson objected to the publication of my essay. Absurdly, my essay was characterized as “pornographic.”  In response to this criticism, Atrium’s editor-in-chief, Katie Watson, a faculty member in the Northwestern Medical Humanities and Bioethics Program, decided to take the entire journal off line. She told Dreger that she would not allow just one issue to be singled out for “special” treatment.
But Watson made no public announcement that Atrium had been taken off line. Now, 14 months later,  Atrium is back online as of May 19, 2015.  This is an important though belated action and in no way diminishes the fact the Bad Girls issue of Atrium was censored for over a year. During the 14 moths Atrium was censored Alice Dreger, who repeatedly objected to the censorship, made the whole “Bad Girls” issue available at her personal website: http://alicedreger.com/Bad_Girls
 I will return to the core issue of censorship shortly, but first some additional background is necessary. Prior to publication, I asked people I respect to provide comments.   A good friend and a long-time-paralyzed guy like me read a draft of my essay. When done, he burst out laughing and told me, “I think some people are going to freak.” More than one colleague read  a draft of my essay and commented “Are you sure you want to publish this? Parts of this are troubling.”  I clearly underestimated the fierce response my essay would prompt. In retrospect I should have discussed the history of nursing and feminism. I did not do so because I felt it was beyond the scope of my essay.
While most people liked what I wrote, a small number of scholars sent me scathing email. Two Catholic bioethicists deemed me a misogynist and a liar. They published a blog called “Blowing Up Bioethics: A Response to Atrium’s Bad Girls and Head Nurses.”  Link: http://www.bioethics.net/2014/04/blowing-up-bioethics-a-response-to-atriums-bad-girls-and-head-nurses/  In this essay, they charged that “the Head Nurses article perpetuates views of women, sexuality, and professionalism that best serve male power, rather than the power of women.” They argued that “the ‘bad girl’ theme of the Atrium issue allowed for an article that imported expectations of female subservience.”
Initially, I was taken aback by this gross mischaracterization of my essay, but the more I pondered the vehemence of their reaction, the more I thought of an article I had recently read in the Atlantic entitled “Disabled and Fighting for a Sex Life” by Katharine Quarmby. Link: http://www.theatlantic.com/health/archive/2015/03/sex-and-disability/386866/  Quarmby maintained: “Disabled people’s sexuality has been suppressed, exploited and, at times, destroyed over many centuries. It has been seen as suspect, set apart, and different from the sexuality of non-disabled people.”  Because I had honestly related my experience in “Head Nurses,” I was charged with being a threat because I refused to set aside my sexuality and  candidly acknowledged my sexual desire and pleasure. In so doing, I not only asserted my humanity, but undermined the myth that people with disabilities, especially paralyzed men, are asexual or unable to satisfy their sexual needs.
My essay is not “a worn-out and objectifying trope” but a forthright step in a decades’ long effort to reject the negative assumptions about disability and sexuality. Progress has been made, but as Shakespeare demonstrated twenty years ago, the interaction of disability and sexuality is tied to some powerful and negative metaphors. The trope we should be rejecting is not the allegedly “pornographic” and “misogynistic” oral sex that in fact took place in a hospital decades ago between two consenting and mutually-affectionate adults, but rather the trope found in D. H. Lawrence’s Lady Chatterly’s Lover, in which Lady Chatterly can  be satisfied only by a virile gamekeeper because her husband was paralyzed in the war.
The physical, emotional, and social abuse of persons with disabilities, and the denial of our sexuality, form a disgraceful and disturbing history that is not well known.  Few know about “the ugly laws” that restricted the movement and social integration of persons with disabilities, and even fewer know about the devastating consequences of the Eugenics movement that legalized the forced sterilization of persons with disabilities.  It was not until the 1960s, when disabled veterans returned paralyzed from the Vietnam War, that the general public was exposed to the idea of disability rights.   Building on 40 years of legislation designed to empower people with a disability, I was among the first generation of people in the late 1970s with a disability who expected to resume a typical life post disabling injury. That typical life included sex, family, education, and employment.
Tuppy Owens, a sex therapist and author of Supporting Disabled People with Their Sexual Lives, believes that people with a disability must fight for their “sexual citizenship.”  But sexual politics is not yet a significant part of the disability rights movement. It should be.  The fact is that people with disabilities encounter discrimination on multiple fronts, and that includes barriers against being empowered to explore their sexuality. Taking down the “Bad Girls” issue of Atrium, and treating my essay as if it was pornographic or misogynist, is an act of censorship that reinforces the social isolation of persons with disabilities and falsely affirms the inability of persons with disabilities to establish intimate relationships.  It is an act that is completely incompatible with the truth and with the central tenets of academic freedom. Although the censorship ended after 14 months it remains a shameful act that should embarrass those at Northwestern University who purport to value that freedom.
            In terms of sexuality, not much has changed with regard to the sexual options open to people with disabilities.  The denial of one’s sexual identity and of the physical pleasure sex provides is potentially devastating to any individual. My essay “Head Nurse” unsettles conventional social norms. I, as a paralyzed man, am not supposed to be sexual, and I certainly am not expected to acknowledge receiving sexual pleasure in the form of oral sex. To deny the realities I wrote about in my essay is to deny the truth – and it is a truth people should know.
Katie Watson, in an email of April 2, referred to the controversy my essay created as the “Atrium drama.” But there is more than just the denial of sexuality and disability at play here. In recent years, university medical centers, like the one at Northwestern, have too often been consumed by corporate branding. Their self-presentation focuses less on the realities of patient care than on the projection of feel-good stories meant to attract well-insured and paying customers.
Watson admitted that this concern with “branding” played a significant role in Neilson’s reaction to my essay:
Our administration views Atrium as a “Northwestern Medicine” publication. I disagree with that characterization (it’s a med school publication) but just as the “Bad Girls” issue came out the med school & hospital entered a branding agreement to have a single identity that raised new sensitivities. As a result, they were very worried that publication of your article in what was newly considered a NM publication might suggest our institution/hospital does not value nurses, or that it condoned sexual relationships between patients and providers in the hospital. I strongly disagreed with their assessment, and I took every single back issue of Atrium down in an act of solidarity, because I refused to single out any one author or issue.
Watson went on to explain Atrium could not go on as it once did. Watson felt bad and asked for a favor:
Until this ridiculous situation is remedied, when people click on your article title (I’m reconfiguring format so articles can be accessed individually) would it be okay with you if they got a message with your email saying to contact the author directly for a copy?  (And we’d send you a pdf of your article individually if you don’t already have that.) This goes without saying, but as a private citizen with free speech rights protected by the First Amendment you can respond to those requests however you like.
I was horrified by Katie’s message.  This was censorship at the bequest of a desire to brand a hospital. I replied:
Thank you so much for your explanation re. Atrium. Needless to say, and for the same reasons that you state, this is unacceptable. However, to help you out of your bind, I will agree with your "solution" as a tentative step while formal measures are taken to protest the University's censorship of my article. But I have one important qualification: Where my article would ordinarily appear, in addition to the reference to my email, the site must state: "This article has officially been censored by Northwestern University. Therefore, anyone wishing to read it should email me at wjpeace9@gmail.com"  

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

Tuesday, May 12, 2015

But Things are Better, Right?

Things are better, right? I am often asked this question by those who know little or nothing about disability. The correct answer is yes. If I state "sorry, but no things are not better in terms of accessibility" I am perceived to be needlessly negative. Others instantly conclude I have lost all semblance of balance because we have the ADA. That law I am told solved all disability related problems. We are world leaders in terms of disability rights. Hence I have no grounds upon which I can complain. I am biting the hand that feeds me. Conveniently ignored is the charity model of disability and how grateful I should be.

Are things getting better? The answer in terms of air travel is no. Things are not better. In fact things are much worse when people with a disability try to fly. Statistics from the 2013 Annual Report on Disability Related Air Travel Complaints demonstrate flying is more difficult for people with a disability. Do not believe me--read the Report of the Secretary of Transportation to the United States Congress, July 2014. Link: http://www.dot.gov/airconsumer/annual-report-disability-related-air-travel-complaints Under the Air Carrier Access Act airlines are prohibited from discriminating against people with a disability. Airlines are also required to regularly review all complaints under the Wendell H. Ford Aviation Investment Reform Act for the 21st Century and report the findings to the Secretary of Transportation.  Complaints are categorized according to the passenger's type of disability and nature of complaint. A disabled passenger is classified as:

vision impaired
hearing impaired
vision and hearing impaired
mentally impaired
communicable disease
allergies (e.g. food allergies, chemical sensitivity)
paraplegic
quadriplegic
other wheelchair
oxygen
stretcher
other assistive device (cane, respirator, etc.)
other disability

Snarky insert: "other wheelchair". So much for the humanity of the person using said "other wheelchair". The wheelchair is recognized but not the human. Ironically this correct in many ways. If traveling with a bipedal person any question or comment asked is almost always directed toward my travel partner.

The alleged discrimination is characterized as  follows:

refusal to board
refusal to board without an attendant
security issues concerning disability
aircraft not accessible
airport not accessible
advance notice dispute
seating accommodation
failure to provide adequate or timely assistance
damage to assistive device
storage or delay of assistive device
service animal problem
unsatisfactory information
other

Snarky insert: "Damage to assistive device" translates into airline industry speak for we broke a wheelchair. Airlines have a penchant for breaking wheelchairs of all types and no insurance carrier in the world will insure a wheelchair placed on an airplane. Why do insurance companies refuse to insure wheelchairs? Airlines break them all the time.

Things are better, right? No. In 2013, the most up to date statistics available, U.S. and foreign carriers  reported 25,246 formal complaints. U.S. and foreign carriers were also subjected to 19 cease and desist orders designed to reduce the number of complaints filed and were fined $500,000 for these violations. Here is the statistic that impacts me most directly.  Nearly half of all complaints reported, 11,768, concerned the failure to adequately assist persons that us a wheelchair. The numbers here tell the story:

Complaints circa 2004--10,193

Complaints circa 2013--21,965

Are things getting better? No. Things are much worse. I would suggest that the number of complaints are double if not triple what is reported. Every year airlines are fined for undercounting disability related complaints. Three major carriers were fined $100,000 numerous times for such under reporting.

I think I have established things are worse in terms of air travel. The skeptic might note that travel in the post 9/11 era is worse for all people that set foot on a plane. This assessment is correct. Flying is miserable. Lines are long, security oppressive, and the control measured over people in airline terminals extreme. I accept all this and silently grit my teeth. But this is what others do not see or experience. Trained employees tasked with helping me on and off a plane that cannot speak a word of English. Employees that have no training and are totally unaware of how to get me in an aisle chair. Employees that do not know what an aisle chair is. Broken aisle chairs or an aisle chair cannot be found. None of this includes rude behavior or nasty comments about my existence. None of this eliminates the most common question I now get: Can't you walk a little bit?" When I state "no, I can't walk a little bit" the reaction is muffled shock or utter confusion.

People with a disability that read the above will likely nod their head in sad recognition. Yes, travel for me sucks. The difference is the ingrained and deeply felt hostility the airline industry has for people with a disability. When I assert my civil rights and obviously know the law and am a seasoned traveler this merely increases the animosity directed at me. What I found most interesting is that my least favorite airline, Delta, was the run away winner in the number of complaints it received. American was second. Two airlines I avoid when possible. My favorite airlines, Jet Blue and South West are much further down the list.  So things are definitely not better. I will know things are better when the number of complaints are in the hundreds and not tens of thousands. I will know things are better when I go to an airport relaxed and not feeling as though I am prepping for war. I will know things are better when access is not at the forefront of my mind at all times. I will know things are better when I feel and am treated just like every other bipedal person in the terminal and on a plane. This day is one I sincerely doubt I will see in my life time.

Friday, May 8, 2015

Road Trip Hits and Misses

My son got a job in Grand Teton National Park in northwest Wyoming. As of Monday, he is a seasonal worker and will be living in the heart of the park. I must confess I am a little jealous of his youth and his freedom--he has absolutely no ties holding him down. I am also happy for him because he has a lust for travel that is being satisfied. Hence seasonal work in various national parks is ideal for him. After much discussion, we decided the best way to get him and his gear west was to drive. Air travel is too much of a hassle for him given his recent travel history (too many one way flights and moves). We made the 2,200 mile trek from New York once before when he was a boy. It was a great experience and we decided to duplicate that experience a decade later. Most of our time in the car was spent talking about life, literature, anthropology, ethics, assisted suicide, racism and the unrest in Baltimore, etc I cherished this trip because I know that as he gets older we will not be spending as much time together. This makes me sad and happy at the same time. I joke I spawned an adult yet he will forever be my beloved little boy.

What I found fascinating about our trip in terms of disability was our hit and miss experiences at low and mid end motels. Heading west we stayed one night in Illinois and one night in Nebraska. These two nights combined with filling up the gas tank twice a day illustrated the extreme disparity in what is imaginatively called wheelchair access.  Curb cuts abound but few conform to ADA codes. Aisles in convenience stores are narrow and most are grossly inaccessible. No junk food for me! Accessible bathrooms are a rarity. Clean accessible bathrooms are even rarer and akin to a diamond. A few times I pointed out the lack of access. The response was a dull look of boredom. An engaged employee would simple say a basic sorry. Inaccessible sandwich shops and road side restaurants were often not accessible. The lack of access was about what I expected and reinforced the fact I am largely restricted to big box restaurants that conform to the ADA. Thus kiss any authentic local food experience goodbye.

My food options were severely restricted as were my options at motels. My motel options were limited to national brands like Days Inn, Holiday Inn Express, etc. I no longer even bother to ask about an accessible room at small town motels. The sad reality is in our expansive nation physical access remains a real challenge--a thought that dominated my mind driving across Nebraska (insert corn joke). There is a vague idea that a law was passed a long time ago and that it solved the problems of all people with a disability. This misconception is reinforced by all the little blue wheelchair logos one observes in parking lots and near entrances to buildings. These signs, deemed by my son as "little blue signs to nowhere", are devoid of meaning. Symbolically they make people without a disability feel better. I for one fail to see the point of these signs when they point to a ramp that is blocked by fire wood or car wash fluid at the local gas station.

The reader without a disability might be thinking, okay I get it, wheelchair use is a major inconvenience but at least the national brand motels are barrier free. Nope. Not true. In Nebraska we stayed at a cheap national brand hotel. It was the least accessible room I have ever been in. I could not reach a window. I could not reach the towel rack. I could not reach the thermostat. I could not reach the shower head. I could not turn my wheelchair in the bathroom. There was so much furniture in the room I could not turn. I could only get to one side of the bed. Essentially I could get in the room and move in a single direction. To turn I would have to back out and turn around outside the room. Once inside I was utterly dependent upon my son. This is not acceptable and I did not complain. This was access circa 1978. We were passing thorough and would be in the room for less than 12 hours. There is no question the people at the desk had no clue what access meant and this gets to the heart of the problem--ignorance. In Illinois on my way home I stayed at a Holiday Inn Express. In general, these motels are nice and accessible. Quite clean, decent linens, comfortable beds, and located within a mile of the interstate. What more could one want. I called ahead and asked if an accessible room with roll in shower was available. After a few minutes I was told yes such a room was available. I asked the clerk to double check with the manager. A few minutes later I was again told yes we have an accessible room with a roll in shower.  I show up ten minutes later and suddenly the accessible room with a roll in shower was occupied (that had one room with a roll in shower). There was no sorry just a spooked look that indicted the desk clerk wanted me to disappear. This is my norm. Life is never simple, travel always presents unnecessary barriers both attitudinal and physical. These barriers limit my life. They limit my experience. They set me apart as different. They set me apart as unimportant and for employees in the travel business I represent extra and unwanted work. This is most obvious in the airline industry that has a deep seeded hostility to people with a disability.

I thoroughly enjoyed my time driving across the country. I put 4,500 miles on my car in 10 days. I spent a lot of time with my son who was disconnected from the internet and gaming world. We had fun and yet the looming un articulated presence of disability was always present. Where to stop for gas? Let's wait for the giant truck stop. Where will we stay for the night? Better wait for the exit with a cluster of motels.  Where will we eat? Select the least horrible big box food chain or let's not eat and just snack for lunch. I hope at some point in my life I will have a bipedal experience. Not the walking part but the privilege of choice. The privilege of not thinking. The privilege of just wanting to eat or selecting a motel and knowing it will be hassle free. The privilege of parking and not encountering a blocked ramp. The privilege of privacy. The absence of being screamed at or being deemed a remarkable human being because I can drive and get my wheelchair in and out of the car by myself.  The privilege of equality. This is what I thought about the most on my drive home. How and when will I be equal. In this regard, the ADA put the law on my side. In theory I am equal. In theory I share the same rights as the bipedal people that stare at me. But I have never truly felt equal. I have never been treated equally. My experiences are in the estimation of others always "special" in some way. Screw special. The only special privilege I desire is equality.

Wednesday, April 29, 2015

End of Semester Blues and More

My spring semester at Syracuse has been unique. Never in my teaching career have I had such a semester. I missed many classes due to family issues and minor illnesses. This is way out of character for me. I typically go several years without missing a class. I also rarely get typical illnesses, such as the stomach bug that I had. When I get sick I usually do it in regal fashion as in become critically ill in the middle of the night on a national holiday. Yes, my timing is impeccable.

The boring preamble above is my way of edging my way into a new and long delayed post. I am not happy. I am experiencing a general malaise affecting my entire life. I am not inspired to write. I am not inspired to cook a good meal. I am not inspired to ride my bike. I am not inspired to go for a walk. I am not inspired to hike. Essentially I am in neutral. Some of this I can blame on my schedule and mourning brother's death. I could state I am busy as is everyone I know. Not all these factors come into play for a global malaise. I just am spent. I taught a class entitled Taking on Ableism 24/7. I got riled up over this class. I loved the students in my class. My excitement quickly dissipated into a lack of action and writing. I feel as though I am stuck in quick sand and not able to initiate action.  The most obvious result of my stagnation is an unacceptable lack of posts. I am after all the self professed bad cripple. Bad cripples are active people. We are strong and unafraid to buck the tide. We assert ourselves and take positions that are unpopular. I still do this but I am feeling very much alone, isolated, and apart from the sea of humanity that ebbs and flows like the tide. I am the rock far off in the distance. An unyielding rock, a danger to others as I am too ornery to acquiesce. This I suspect is my problem. It is why I printed and have carried around a post that perfectly articulated why I am unhappy and not inspired. Link:http://thoughtsnax.com/2015/03/13/dignify-this/

I'm done. I'm done being polite. I'm done shutting up about good liberals who seem to get every sort of liberal rights and civil liberties except the equality of rights, respect, and dignity of our brothers and sisters with disabilities. I'm done with disability rights  as a "when get around to it" right. I'm done with people who are willing to use respectful terminology except--big sigh--avoiding using the word "retard" as just one step too far forward thought control. And I'm done with "civil rights" law firms in inaccessible offices and "civil rights" lawyers who don't hire interpreters. I'm done.  

I too am done. I have no interest in hearing a long story about why a building is not accessible that was constructed in the post ADA era. I have no interest in committees that are formed to address the lack of access at any given university campus. I am weary of ADA lawsuits that take over a decade to resolve. I am sick of hearing people tell me we never thought about an access issues. I do not want to hear I am the first speaker we ever had that had a disability and refused to speak at a small desk next to an impressive speakers podium. I do not want to be harassed when I go out my door. I want to be able to go to the bike shop, get my bike tuned up for the spring and not be called inspirational by people I never met and have not seen me ride. I want to get in and out of my car and not be stared at. Even more basic, I would actually like to be able to park in handicapped parking without driving around waiting for a space to be open or not cluttered with shopping carts making it impossible to park.  In short, I have no desire to interact with bipedal people our physical environment is designed for. So let me be even shorter and more direct to those that accost me or other people with a disability on a regular basis regardless of whether we are being praised as being exceptional or accused of being the anti Christ. Fuck you. How is that for direct?

There can be no miscommunication here. Disability rights and civil rights are one in the same. I have no interest in hearing a long story about access. I want a yes or no. I will not engage in a discussion about the law or silently accept ignorant comments about how a given building is grand fathered in and exempt from the ADA. I do not want to hear Compassion and Choices broadcast how much they care about vulnerable others and yet actively push for assisted suicide legislation. All the protections under the law cannot protect the elderly, disabled and terminally ill. I do not want to talk to members of the Green Party and have neo liberals tell me they support assisted suicide legislation and disability rights. Sorry, but the logic is deeply flawed. And forget the ACLU--you know that liberal organization of lawyers devoted to nondiscrimination. I am no lawyer but I find it fascinating and disheartening that the ACLU supports assisted suicide legislation or at best cannot wrap their heads around the fact people with a disability are discriminated against every time they try to access health care.

My life matters. I love my life. I love teaching. I love the sunrise every morning. I value my life. I accept this as a given. Am I having a hard time at the present? You bet I am. But that does not mean something as simple as "Harvey Day" makes me happy. For those who do not follow baseball Harvey Day is when the dynamic pitcher for the Mets takes to the mound. I take great pride in the many students I have who are about to graduate from Syracuse and will be giving presentations about their final Capstone projects in the Hall of Languages--my favorite building on campus. Do others see me in this light? Not a chance. I am a failure with a stigmatized identity. This gross misconception shocks me. The utter lack of social progress in terms of disability rights 25 years post ADA leads me to shale my head on a daily basis. I refuse to engage in banter with others who think they support disability rights under the guise of non disabled privilege. My life is radically different simply because I cannot walk. Such a minor thing it is to be bipedal; but not to those that walk. Walking is required to be social viable and is key to being valued. The irony to me is there are plenty of bipedal people who are far more disabled than I am but I digress.

The good news is I have a cure for my my malaise. I am going on a long road trip. When experiencing a deep slump I get in the car. Road trip! This road trip with my son is a doozy. We are driving to Wyoming. My son got a job as a seasonal worker in Grand Teton National Park. As he said, "Dad, who cares what I am do this summer. I work 40 hours a week and can camp every weekend in one of the most beautiful national parks in the nation". This logic is sound. It makes me think that growing up with a father who is paralyzed presented manageable social stigma and enabled a typical child to learn some real life lessons. I wish I knew how to impart the lessons he learned to others. Bigoted others who even in my middle age years harass me daily.  

Sunday, April 5, 2015

Easter, Death and my Brother James Peace

My brother James Peace died this week. My shoulders hurt. My eyes are sore. My heart broken. The mourning has begun and must run its course. I have tried to write something and quickly stop as my eyes floor with tears. Today is no different. I have written and spoken a lot about how great my parents were when I was a sick kid. I have also written a lot about the care I received as a kid. What I have not been so open about for reasons I cannot decipher is how my brother too cared for me. He had an innate ability to know what I wanted. Silence, a long middle of the night discussion on the meaning of life or cut rough shod over my living conditions. What he did the most though was be a humane presence. He showed up to see me at 8AM, noon, 2AM, 1PM--I typically had no idea when he would show up or how long he would stay. He knew what to bring. News papers, flowers, or a beer. What I knew and what I always looked forward to was his smile. A giant shit eating grin was often on his face. In the summer he often wore a baseball cap. This is the brother I loved. He was a good man and will be missed more than he imagined.

Sunday, March 15, 2015

Diane Rehm and the New York Times are a Problem

On March 14 the New York Times editorial board published "Offering a Choice to the Terminally Ill". Link: http://www.nytimes.com/2015/03/15/opinion/sunday/offering-a-choice-to-the-terminally-ill.html?_r=0 As expected, the NYT editorial board is in favor of assisted suicide legislation and staunchly supports Diane Rehm and the advocacy group Compassion and Choices (once known as the Hemlock Society). The NYT editorial is boiler plate pro assisted suicide rhetoric. The editorial could have been written by any news agency and this is not just disappointing but indicative of the way Compassion and Choices has dominated the discourse associated with the end of life. Two things struck me reading the NYT editorial. First, the adoption of Compassion and Choices phrases. The NYT did not refer to assisted suicide legislation but rather "so-called aid in dying bills". Such proposed legislation was described as "a humane option". Moreover, the NYT argues law makers should consider "how successfully and responsibly the law has been carried out in Oregon". Ignored was the experience of Randy Stoup and many others. Stoup was an uninsured Oregon resident unable to pay for chemotherapy. The Oregon state health plan would not cover chemotherapy but would pay the cost of physician assisted suicide. Second, and most problematic, is the NYT adoption of Compassion and Choices rhetoric. In an effort to undermine opponents of assisted suicide as being cold and uncaring the NYT noted Rehm's terminally ill husband "only option for ending the suffering was to stop eating and drinking. Physicians in most states, including Maryland, where he lived, are barred from helping terminally ill patients who want to die in a dignified way". The key here is how does one define "dignified". And more to the point, a patient, any patient in fact, can accept or refuse treatment. If one wants to die with "dignity" however it is perceived a patient can already do that by directing their own health care. I suggest all people read various forms of the Patient Bill of Rights. People have the right to fair medical treatment and the guarantee of autonomy over their health care. The NYT emotional ploy that "Health care providers in states where assisted suicide is illegal face wrenching choices when dying patients ask them for help" is grossly misleading. Health care providers are specifically tasked to respect and follow the autonomous decisions patients make. Those choices include tacitly hastening the end of life if a person chooses. A person with cancer can choose to not receive life extending chemotherapy for instance. A person can choose to not receive life sustaining anti-biotics. Examples abound when one factors in serious illness, disability and advanced age.

What bothered me the most about the NYT editorial was whole sale acceptance of a Compassion and Choices framework about the end of life that defies logic and distorts the politics associated with assisted suicide legislation. According to the NYT, "Ms. Rehms said she and her husband had long ago agreed they would help each other die if either was in growing distress from a terminal illness. Her inability to help him die humanely is a situation no spouse should have to face". I am stunned the NYT would stoop this low and be so obviously manipulative. What is over looked is Diane Rehm's long standing support for assisted suicide and association with Compassion and Choices. To suggest that Diane Rehm is a paragon of virtue and neutral observer is wildly wrong. Rehm is the public voice of NPR, her radio show is nationally broadcast, she has an estimated 2.6 million listeners and is closely associated with Compassion and Choices that advocates for VSED (voluntary suspension of eating and drinking), the method of death for her husband. Rehm has also been subject of criticism from the NPR's ombudsman who pointed out Rehm has been attending fund raising dinners for Compassion and Choices and has likely raised millions of dollars for the organization. Diane Rehm is far from objective. The same can be said about me. I am a member of Not Dead Yet, a grass roots organization opposed to assisted suicide (I am also on the Not Dead Yet Board). The difference between Rehms and myself is I am above board about my affiliation and bias. Before I give a talk that might remotely relate to assisted suicide I explicitly state my opposition to assisted suicide legislation and bias. To the best of my knowledge Rehms is not transparent in her bias. Elizabeth Jensen was quoted in the Washington Post that in her view "Rehm's participation as a celebrity guest of sorts at fundraising dinners for an organization that does extensive political lobbying, as compelling as her personal story is and as careful as she is being, is a step too far for someone associated with NPR." Link: http://www.npr.org/blogs/ombudsman/2015/02/25/388723154/diane-rehm-personal-politics-and-the-ethical-reach-of-npr Rehm's support of assisted suicide has been evident for decades. What is new as I perceive it is her move to become a key figure in advocating for assisted suicide as well as a leading fundraiser. Rehms efforts are not exactly a secret: the Washington Post featured an article about Rehm entitled "NPR Host Diane Rehm Emerges as Key Voice in the Right to Die Debate." Link: http://www.washingtonpost.com/local/npr-host-diane-rehm-emerges-as-a-key-force-in-the-right-to-die-debate/2015/02/14/12b72230-ad50-11e4-9c91-e9d2f9fde644_story.html In the Washington Post story Rehm's noted she was well aware she was a journalist and as such she must be careful. "As strongly as I feel, I don't want to use the program to proselytize my feelings. But I do want to have more discussions about it because I feel its so important". I agree assisted suicide and more generally end of life issues need to be discussed. I do not think, however, Rehms, given her strong support of assisted suicide can do her job as as an unbiased journalist. When the subject is discussed on her radio show her bias is obvious. Opponents to assisted suicide do appear on her radio show but are given short shrift at best.

In response to criticism, not mentioned in the NYT editorial, Rehm has agreed to scale back her efforts in what Michael Rosenwald described as the "right to die debate". Exactly what does this scaling back involve? In my opinion not much. According to Rosenwald, Rehms will appear at two more sold out fund raisers. Rehm is not modifying her words. Rehms was also quoted recently as stating assisted suicide (my words) "should be a a right for me and should have been a right for my husband". Such a declarative statement is not what I would expect to ever hear from a supposedly unbiased journalist.

Rehms is in my estimation a fierce advocate for assisted suicide and is attempting to build on the wildly successful Compassion and Choices Brittany Maynard public relations campaign launched last year (Maynard's husband does fundraising for Compassion and Choices as well). As a Compassion and Choices advocate Rehms is aware of the importance of language I already referred to as rhetoric. Rehms refers to the right to die debate rather than assisted suicide. Rehms never uses the word suicide because as the Washington Post noted "Public opinion on the issue depends on how it is described, according to Gallup, which has found strong support for doctors helping patients end their lives by some painless means but a far slimmer majority favor assisting the patient to commit suicide. Not surprisingly, groups such as Compassion and Choices, studiously avoid using the word suicide." Link: http://newsbusters.org/blogs/tim-graham/2015/02/15/nonpartisan-public-radio-npr-star-diane-rehm-moonlighting-right-die

Why has Rehms views changed to include such strident support of assisted suicide legislation? Tim Graham at Newsbusters baldly stated" "Rehm is mad her husband died when she was not present. It was not then just his right to die, but her preference that he die exactly when she wanted it. She spent the night with him, and in the morning she went home for a shower. Then she received the call--come fast, he's slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there. Thats all I keep thinking about, she said. Why can't we make this more peaceful and humane. In a long interview in her office Rehm asserted I feel the way that John had to die was totally inexcusable. It was not right. She also said Kevorkian was before his time. He was too early. The country wasn't ready. Link: http://newsbusters.org/blogs/tim-graham/2015/02/15/nonpartisan-public-radio-npr-star-diane-rehm-moonlighting-right-die

I keep thinking of two words--peaceful and humane. All humans should die this way--at peace and in a humane way. Assisted suicide is not the answer. Indeed, it is an extreme legislative initiative for a social problem. It reminds me of the Ashley Treatment controversy. Doctors in surgically altering Ashley X resorted to an extreme medical solution for a social problem. My suggestion is not exciting nor will it raise money like Rehms or incite angry and heated debate. Why don't we enter into a national discussion about end of life issues. Better yet, I implore people to discuss end of life issues with their family, siblings, spouse and loved ones. If we as a society do this I would suggest many would die at peace in a manner of their choosing.