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Friday, March 17, 2017

On Fear and Humanity in the Trump Era

I have written precious few posts the last few months. The reason I have not been writing is simple. My wound may be healed but that does not mean life has returned to normal. A freshly healed wound is fragile in the extreme. Thus what was once ordinary, a simple transfer for instance, is accomplished with great caution. Every movement requires thought and it is draining mentally. In short, the psychic toll a wound takes is massive. The end result of a healed wound is that I am weary and frankly more than a bit afraid. Living in the era of Donald Trump is nothing short of scary for any person who is vulnerable. Every day seems to bring another outrageous tweet or policy decision. It does not help that I have been experiencing pain in my hip and butt. This is common for me at the end of the healing process. Take a spinal cord injury, add in skin and nerve growth and pain is to be expected. For the  last twelve hours it feels as though an iron hot poker is on my hip. No medication exists that I am willing to take. I prefer a sharp mind and physical pain over a dull mind and masked pain relief that opioids provide. Medical marijuana would provide highly effective relief but in New York medical marijuana is legal in name only. 

Pain does not bother me. Pain is my long time buddy. No pain I experience now comes close to what I endured as a child. I will never forget the pain I felt the first time I presented profound neurological anomalies. I was nine years old and woke up in severe gut wrenching pain. I tried to walk downstairs to watch Go Speed Racer go when I collapsed in a heap of pain and let out a blood curdling scream. My poor parents. Little did we know that day would radically alter my life and theirs. That day dominated my thoughts last night. My stomach was tightly clenched in spasm all night. My right hip and ass felt like they were on fire. I hardly slept. I am extremely tired. And yes my hip and butt are still burning. As long as I am active and get routine things accomplished I am good to go. On days like this though I am unable to suppress how badly damaged I am. By damaged I am not referring to my dysfunctional body. I take great pride in my body. It has served me well. I will die knowing I got every last ounce of energy out of my body. Where others see a host of bodily deficits, I consider myself lucky to have so much function. The damage that I am referring to is not physical but rather social. For me, the ordinary is impossible. What is commonplace for others is never that for me. My difference is ever present. The fact is for many I have a value negative life. For a scholar like Peter Singer and a host of other utilitarian philosophers my existence is unfortunate. My life is open to good natured debate. Is the pain I experience greater than the meagre quality of life I enjoy? Am I an economic burden of such magnitude that I should not exist and thus be denied basic health care? This line of reasoning chills me to the bone. It makes me fearful to access basic health care. I am not alone. Indeed, millions of people with a disability have similar concerns and fears. 


A few years ago I bought the book Death or Disability? by Dominic Wilkinson. After the book arrived  left it on my work table for weeks untouched. I had but one thought. Did the author wish I was dead? Is my existence such an affront, all things considered, should I not exist? I met Wilkinson two years ago and he and I spent many hours talking about bioethics. I liked him very much. Looking back, I no realize that disability is an amorphous poorly understood term--especially for bioethicists and philosophers. Disability can mean many things. A car can be disabled. A person can be temporarily disabled or permanently disabled. One can have a severe disability. A disability can be minor. One can be disabled in a myriad of ways. Regardless of where one falls on the disability spectrum, disability is bad. Disability is inherently negative. Any physical or mental impairment is bad in large part because it can adversely impact a person's ability to work, or worse, learn and become well educated. We people with a disability know we are perceived to be less because bipeds, typical people, feel free to share their views. At least once a year a stranger will come up to me and state "I would rather be dead than use a wheelchair". Recently I read about a mother with a profoundly disabled child who had a stranger come up to her and state that her child was living proof euthanasia should be practiced. Every person with a disability I know has had these shocking experiences.  

When it comes to disability the work of people like Peter Singer continues to resonate and generate heated debate. Remember, disability is bad. This is a given. Believe me I get it. Human beings were not meant to be paralyzed. Nearly forty years of paralysis has taken its toll on my body. I get it at a visceral level. Sleepless and in pain, last night I took to surfing the internet and re-read a piece by Louise Kinross that concerned her reaction to Singer's comments in the Journal of Practical Ethics. Link: http://bloom-parentingkidswithdisabilities.blogspot.ca/2017/02/im-not-okay-with-disability-hate-being.html?m=1 Kinross wrote that "Singer said that parents should not be 'stuck with having to look after a really severely disabled child'. He said that a child with a severe disability can rob parents and siblings of happiness, and that a future child of the same parents might have a better life. 'Its a question of one life or a different life', he said. But he doesn't talk about the actual research on families rating children with disabilities and their siblings, the real challenges and rewards".  I shake me head in wonder for I truly do not understand the man. First, Singer does not engage those parents that actually raise a child with a severe disability. For instance he failed to take up Eva Kittay's suggestion that he visit the facility where her daughter with a severe disability lives. In his work, Singer does not reference much less discuss the substantial literature written by those who care for people with a severe disability.  The only person with a disability I am aware he was willing to engage was Harriet Mcbryde Johnson who he invited to debate him at Princeton University. Second, Singer is a utilitarian philosopher whose work has practical applications. For example, in the New York Times he argued health care must be rationed and that certain lives had less value. One of the examples he used was life with quadriplegia which he believed was inherently inferior. Link: http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?hpw&_r=0 His work with regard to health care policy is taken seriously. In the Journal of Practical Ethics, subtitled A Journal of Philosophy, Applied to the Real World, Singer has been tasked to respond to questions posed by the editor and Theron Pummer. One question and answer has garnered much attention in the world of disability rights. Link: http://www.jpe.ox.ac.uk/papers/twenty-questions/
You said in an interview with Andrew Denton that if you and your wife had a child with Down syndrome, you would adopt the baby out. Could you explain the ethics of this and isn’t it a selfish decision? Could you elaborate on your views about disability, in particular why you think a life with disability is of less value and what you think the implications of that are?
I was assuming that there are other couples who are unable to have their own child, and who would be happy to adopt a child with Down syndrome. If that is the situation, I don’t see why it is selfish to enable a couple to have a child they want to have, and for my wife and myself to conceive another child, who would be very unlikely to have Down syndrome, and so would give us the child we want to have. For me, the knowledge that my child would not be likely to develop into a person whom I could treat as an equal, in every sense of the word, who would never be able to have children of his or her own, who I could not expect to grow up to be a fully independent adult, and with whom I could expect to have conversations about only a limited range of topics would greatly reduce my joy in raising my child and watching him or her develop.
“Disability” is a very broad term, and I would not say that, in general, “a life with disability” is of less value than one without disability. Much will depend on the nature of the disability. But let’s turn the question around, and ask why someone would deny that the life of a profoundly intellectually disabled human being is of less value than the life of a normal human being. Most people think that the life of a dog or a pig is of less value than the life of a normal human being. On what basis, then, could they hold that the life of a profoundly intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being?

What I find difficult to grasp is that Singer does not understand how hurtful his words are. I simply don't know how to respond. I feel as though Singer has engaged in this sort of debate repeatedly. The reaction is always the same. People with a disability and the parents of children with a severe disability are outraged and Peter Singer calmly replies as though nothing more than an interesting conversation is taking place. A conversation is taking place but it is one that is decidedly unbalanced. Singer is the scholar, a privileged man of considerable repute. I am a man whose life is perceived to be value negative. The bar is set very low. Remember, the question death or disability is subject to good natured debate. 

Again, I don't get it. And, yes, I am scared. I read in Vox that budgets can be perceived as moral documents. Trump's recent proposed budget is a moral failure. Link: http://www.vox.com/policy-and-politics/2017/3/16/14943748/trump-budget-outline-moral The budget is more than a failure though. It is catastrophically bad. People will die. This is no exaggeration. To live with a disability is to live one short step from oblivion. Last week I read the following: 


Living with a disability, I know how it feels to be different, to be judged by my appearance, have my intellect unfairly tethered to the physical prowess I lack, be talked over, gazed through, second-guessed, placated and belittled. The pressure I feel to be perfect is real. I have zero margin for error. My life, like so many others, is a daily endeavor to define, and often reshape, perception. I've never felt more vulnerable and scared, than I do living in Trump’s America. His administration's words and actions fundamentally contradict inclusion and tolerance. I worry that his endless vitriol will forever alter the way we interact with each other as Americans, and citizens of the world, by rationalizing and ultimately legitimizing negative stereotypes. Making sure this doesn't happen is our shared responsibility. Words matter. Context matters. Truth matters. Our voices matter. Regardless of the space we occupy on the spectrum of physical ability, our socioeconomic status, religious beliefs, who we love or the color of our skin, the greatest gift we can give someone is to examine life from their perspective. Doing so reveals the common threads of our humanity. Link:http://www.nydailynews.com/life-style/living-disability-trump-america-scary-hell-article-1.2992223?cid=bitly
The Trump administration has no soul. Humanity is absent. The one unifying theme is that Trump is no different than a grade school bully. The target remains the same--the person most vulnerable. The weakest, the least connected, the poor, the elderly, the disabled--we are all an easy target. Yesterday, I watched in stunned silence as the budget director Mick Mulvaney explained that eliminating the well-known and essential program Meals on Wheels was the compassionate thing to do because the program cannot demonstrate it is successful. This is a lie. Meals on Wheels saves lives. It helps the elderly remain in their own homes and delays entry into a nursing home. Meals on Wheels reduces the incidence of falling among the elderly. These facts are conveniently ignored. The Trump administration is big game hunting and Meals on Wheels is small time. The real goal is to eliminate the Community Development Block Grants program. This is what happens when you put business men accustom to dealing with the bottom line in charge of the federal government. The government Mulvaney has said has spent billions of dollars of tax payers money and we have nothing to show for it.  He went on to state: 
I think you know that Meals On Wheels is not a federal program. It’s part of that Community Development Block Grants (CDBG) that we give to the states, and then many states make the decision to use that money on Meals On Wheels. What I can tell you about CDBGs is that’s what we fund. Right? So we spend $150 billion on those programs since the 1970s. The CDBGs have been identified as programs since I think the second Bush administration as ones that we just not showing any results. We can’t do that anymore. We can’t spend money on programs just because they sound good. Meals On Wheels sounds great. Again, that’s a state decision to fund that particular portion, but to take the federal money and to give that to the states, and say look we want to give you federal money for programs that don’t work. I can’t defend that anymore.
The federal program that Mulvaney states don't work are the exact programs I know that make life possible for many people with a disability. Indeed, at one point in my life I accessed Meals on Wheels. This program prevented me from being hospitalized. I did not have the ability to sit up and cook for a short period of time. I got by because of the kindness of others and the federal government. Kindness. That is absent these days. Humanity is certainly absent from the Trump administration. Last year Meals on Wheels helped 2.4 million people most of whom were elderly and disabled. Billions of health care dollars were saved. How do you quantify success to an administration that is openly hostile to the poor, vulnerable, and disabled? We are not "winners" to use a word that is repeatedly used by Trump.  Trump's vision is stark--winners and losers exist. Mulvaney stated:  You’re only focusing on half of the equation. Right? You’re focusing on recipients of the money. We’re trying to focus on both the recipients and the folks who give us the money in the first place, and I think it’s fairly compassionate to go to them and say look, we’re not going to ask you for your hard earned money anymore. I can only assume I am a recipient. I am a loser. The winners are tax payers. I am dependent upon the largesse of the federal government and the day of reckoning is upon us. I see this as Peter Singer ethics in practice. The question remains, death or disability? I know what the Trump administration thinks. Like Peter Singer and other utilitarian philosophers, negative value lives can be eliminated. Be afraid my peers. Be very afraid. 

Thursday, February 16, 2017

The Lack of Inclusion and What You Can Do

My wound has largely healed. After stagnating for over four weeks the wound closed up in a mere few days. Now begins the slow, laborious, and painful process of increasing my time sitting and resuming routine day to day events. The first routine event I resumed was taking the bus home from campus. Centro bus service has not changed in the many weeks I was unable to take the bus. The buses remain dirty. Syracuse remains impoverished. The bus drivers are still an interesting collection of people. Yesterday I got in line to get on the bus and the driver yelled "Yo, wheelchair you getting on"? With a deep breathe I answer "yes". I move into position so my wheelchair can be tied down and the bus driver is not impressed. "You need to wear a seat belt. You are not safe. The driver proceeds to mutter under her breath about danger, law suits, her job security, and how I seem to be a threat to her, myself and others on the bus. Welcome back to the routine social denigration that is the part of the lives of so many who live with a disability. I did not get annoyed with the driver. I did not point out I am a human being and not a wheelchair. Nothing could spoil my mood. I was out and about on my own for the first time in nine weeks. The weather forecast was predicting lake effect snow. The world, even gritty Syracuse, was wonderful.

My walk home made me realize just how out of shape I am. A short 15 minute walk from the bus stop to my apartment took 30 minutes. I was seriously winded. I stopped many times to catch my breath. Nine weeks of inactivity has taken its toll. Time for some serious cardio workouts on a daily basis or as much as my skin will tolerate. While on the bus I read an opinion piece in NYT that was part of the paper's new series on disability. In Melissa Blake's, "Disabled, Shunned and Silenced in Trump's America", she wrote that she is afraid. Link: https://www.nytimes.com/2017/02/15/opinion/disabled-shunned-and-silenced-in-trumps-america.html I can relate. In the last year I have noted a significant increase in disability based harassment. There is no question in my mind we people with disability can thank the current president for the rise of aggressive and nasty ableism. Blake wrote

"I’m a woman. I’m physically disabled. And I’ve never been more scared than I am right now. There is no question people who are vulnerable are being targeted by the current presidential administration. The Affordable Care Act is going to be repealed, Roe v. Wade may be over turned and women may lose control of their reproductive rights. The new secretary of Education does not know IDEA is federal legislation. The new Attorney General, Jeff Sessions, is a flagrant bigot who once stated that trying to educate children with a disability created destructive chaos in schools. The obvious solution to non existent chaos is the segregation of all children with a disability. I understand Blake's fear and her words resonated as she ended with the following:

The truth is, I’m afraid. I’m afraid of living in a country that would shun people with disabilities as if they didn’t exist. I’m afraid to live in a country that sends these kinds of messages and think it’s perfectly all right. Because it’s most definitely not all right and never will be. If Trump really cared about giving people their power back, it would behoove him to actually sit down with members of the disability community and listen — really listen — to their stories and their concerns and their recommendations for the future. My mantra has always been “I’m a person,” and that has never been truer than right now. Yes, I am a person. I matter. People with disabilities matter. I will never stop fighting for our rights and against bullies. I will never not be a person. I’m taking back my power and I want President Trump to know it.

Like Blake, I am a person. I am not a wheelchair but rather a human being. Often I am not treated as such. When the bus driver yelled "yo wheelchair" at me every passenger on the bus heard this. Those same passengers walked directly in front of me stepping over my feet as they boarded and did their level best to pretend I did not exist. I am not a member of a distinct minority group but a mere individual. I was and remain wheelchair in the minds of many. This is a depressing reality. Worse, I am expected to be polite at all times for I am always the only person using a wheelchair and represent all people who use a wheelchair. If I become angry it reinforces the antiquated belief that all people who use a wheelchair are bitter angry people who wish they could walk.

In recent months I have struggled with being polite. In the last two years Syracuse University has badly failed to be inclusive to students and faculty members with a disability. They have used and abused both students and faculty. I have done my level best to be polite but have periodically failed. For instance, I have repeatedly stated the controversial promenade project was a "symbolic fuck you to every person who uses a wheelchair". My words are an affront to many who believe otherwise. I cannot toe the party line here--namely the promenade was created in part to make the campus more wheelchair accessible. The promenade looks great and will be on university brochures for years to come but it has added more steps to campus and is a barrier to inclusion. I find the project a shocking failure in terms of wheelchair access. Here in central New York where people are ever so nice to be confrontational is frowned upon. This pressure to be polite and nice is nothing short of dangerous for vulnerable populations. I just read an essay in the Establishment by Alex Lu, "I'm Not Going to be Nice About Ableism" that reinforced my thinking about the dangers of being nice. Link: https://theestablishment.co/im-not-going-to-be-nice-about-ableism-d8d32c493b7b#.63ds1y27x

In our current political environment, where civil rights are being eroded, we are beginning to see old institutional barriers re-emerge. We must be very careful not to fall for the alluring lie that if marginalized groups are nice enough, people will see the error of their ways. Pretty and flattering words alone do not change hearts and minds; making the political personal does. To even be in a place where we can even access your hearts and minds, much less change them, we need to be your colleague, your book club member, your neighbor, your boss, your friend, your teacher. 

Being nice gets people with a disability nowhere. A glance at disability history quickly reveals that direct action in the form of civil disobedience and protests yield results. Every time I get on a public bus I think of the fierce resistance I encountered as an EPVA bus buddy in New York City. I think of the Capital Crawl. I think of the Gallaudet and the Deaf President Now protests. I think of the long struggle to pass the ADA. What we people with a disability have never had is the support of the bipedal hordes that surround us. What people do not want to address is why are there so few people with a disability gainfully employed leading typical lives. Typical others do not want to address much less acknowledge that ableism is built into the fabric of society. Lu wrote: 

 you must understand that it took me extraordinary measures to get to where I stand today. As an undergraduate, I quickly realized that the lecture format in universities severely disadvantaged me due to my disability; my response was to spend three times the amount of time as my hearing classmates, painstakingly going through the syllabus of each class I was enrolled in line-by-line, piecing together the content from lecture slides, textbooks, and independent research, to compensate for what I could not glean from the lectures. Even then, I would get docked marks; sometimes it would be because I would miss that the professor emphasized a particular point not on the syllabus and told everyone else it would be on the exam. Still not being enough, I made the strategic decision to take a full year off from my undergraduate to work as a research assistant, where I co-authored enough papers to finally bridge the gap between myself and hearing students. 

One would think the university system and academic organizations would openly welcome students and scholars with a disability but that is wildly wrong. Universities have never been welcoming to students and faculty with a disability. Exceptions exist of course--a simple google search will lead to many essays that identify universities that are indeed accessible. Syracuse University is one of those universities that is often listed as being accessible. Yet Syracuse uses OrangeSUcess that is entirely inaccessible to those who are blind and use screen readable soft ware. When I attend an academic conference even the most basic question about wheelchair access cannot be answered. Needless raised stages with steps abound at academic conferences and I have had many sessions cut short waiting for the stage to be taken down. If I become angry I also become the problem. This is most evident at the recent AWP meetings (Association of Writers and Writing Programs) in Washington DC. 15,000 people attended and the AWP has an abysmal record with regard to the inclusion of writers with a disability. Stephen Kuusisto recently wrote: 

The great thing about the AWP’s annual fest is there’s something for everyone who loves words. Unless you have a disability. If you’re disabled you’re essentially forced to participate by sufferance. That is, you’re allowed in. If you need ramps, sighted assistance, directions, or, perhaps more fundamentally, a welcoming smile, you’re out of luck.

Kuusisito is getting at a truth that is is hard to fathom. 


The truth is, the disabled are viewed as a nuisance by academics. There are lots of reasons for this, but for my money the single biggest one is professors by and large don’t view disability as a matter of diversity like race, gender, or sexual orientation, and imagine that it’s a rehabilitative issue—a 19th century view to be sure—but one that’s widespread. Most colleges offer “special” services for “those students”—there’s a segregated office that “handles” those folks. Most professors know the rubric that’s supposed to be included on the syllabus. If you need accommodations go here….” That disability is a matter of culture; that the cripples are among the concert goers, the literate, the citizenry is hard for academics to fully grasp. 
In refusing to address disability as we would address race, gender or sexual orientation, ableism will remain rampant. Consider I once tried to attend a lecture at Syracuse University in Grant Auditorium. It is a large lecture hall holding ate least 600 people. I watched people stream into the auditorium as I searched for a wheelchair lift. I found the lift. It was filthy, encrusted with salt and years of dirt. The lift went to the upper most left hand side of the auditorium where a camera tripod was set up and the so called handicapped seating area was cramped, dark and the area was used to store boxes. All I could think of was damning signs "colored only" from the segregation era. Lest it appear I am picking on Syracuse, recently Judith Butler delivered the 2017 Houseman lecture at the University College of London. The focus of Butler's lecture was on the body and her interest on disability and disability studies. The auditorium where Butler spoke was not wheelchair accessible. This is not an isolated incident. Indeed, it happens all the time. In 2013 I wrote about a conference on disability and health care I tried to attend that was not wheelchair accessible. Link: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html
I often talk with a friend and colleague about the myriad of access fails I encounter in academia. She is always surprised and tells me I am making a difference. She is correct. But as I often reply educating the American population one by one in a nation of over 300 million people is an inefficient way to educate others. We people with a disability need support. That support is largely absent. Grant auditorium here at Syracuse remains "minimally accessible". Anyone who uses a wheelchair knows this euphemism means the venue is not accessible. Events are routinely held in Grant auditorium. It remains inaccessible and I don't expect this to change. Similarly, OrangeSUcess remains impossible to use by students and faculty who are blind. The administration knew this and yet still went forward with its usage. The depressing take away is that students and faculty are on our own. Most ADA coordinators are useless. Their job is not to advocate but insure minimal compliance with the ADA and insure a given university is not sued. Thus people with a disability are stuck between a rock and a hard place. If we are impolite, or worse, get angry we are instantly lumped into the bitter cripple stereotype. If we are polite nothing changes. The onus has been on we cripples for decades. We must defend our civil rights. I have been defending myself and disability rights for decades. For much of the time I have been a lone voice. I hope this will change and here is what you can do to help scholars and writers with a disability. Follow the provided link and let the AWP know the lack of inclusion of writers with a  disability is unacceptable. Link: http://bumblemoth.com/open-letter-to-awp-regarding-disability-rights/ Further, I implore those without a disability to think out of the box. Rethink all you have absorbed about disability. Think of disability not as an individual physical deficit but rather a social problem. Most important of all, when you think of disability dismiss what cannot be done. That is painfully obvious--yes, I know I cannot walk. The inability to walk is the least of my problems in life. Instead think of what can be done. Use your imagination. This is revolutionary. And believe me we need a revolution. 

Thursday, February 2, 2017

Stagnation and Lives Worth Living.

My wound has stagnated. It has not gotten worse nor has it gotten better in four weeks. My life, as a result, remains on hold. I sit in my wheelchair as little as humanly possible. When I sit I am always on the clock. How long have I been sitting up occupies my mind. Each and every transfer I make is done as carefully as possible to avoid any torque on my skin. I look at my skin daily. I read about wound care online. I watch You Tube videos about wound care. I have changed the type of dressings I use on my wound. I never go out alone. I am dependent upon my son and a friend who drive me to and from school. I do so to save time and remarkably miss the bus. Each and every second I sit is reserved for something important. I do my level best not to sit up for more than two hours. The impact this has had on my mind and spirits is overwhelmingly negative. My wound is glacially sucking the life out of me. Drop by drop my spirits sag into an abyss. Since Thanksgiving I have been unable to sit without angst. One bad fall on the wound I had in 2010 has derailed my life. The wound is very small. It has no depth. It is smaller than a dime. If I were not paralyzed my wound would be insignificant.

Only one thing keeps me from slipping into a deep depression. I am lucky. I have a tiny but tight knit group of people I can rely on. They do the ordinary for me. My constant mental refrain is "I am not in a nursing home". I am acutely aware that I am much better off than others with similar skin woes. The norm is to be seen by wound care. Wound care is a complex art form. It is more art than science. No two wounds heal the same way. To heal a wound is not complex: cover with sterile dressing, keep it clean and above all else eliminate all pressure until healed. Simple. Not really. Accessing health care as a person with a disability is never easy. Indeed, accessing health care for people with a disability is inherently dangerous. When I engage health care professionals I spend much of my time assuring them that my life is worth living. Health care workers make all sorts of assumptions. Most assume I am unemployed. Most assume I am not independent. Many are shocked when they learn I have a PhD. I am regularly told I am inspiring because "I could never live with such a severe disability". The fact I can drive is nothing short of miraculous. When I state I am a father I am asked: "So how many years after your son was born were you paralyzed". The message is not subtle. I am not parental material. I am not independent. I am not employable. Ableism is rampant in our health care system. A few years ago Stella Young, a well-known disability rights activist wrote:

social attitudes towards disabled people come from a medical profession that takes a deficit view of disability... As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our liveshttps://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying

Young is spot on. The question in the back of people's minds when they encounter a person with a disability or think about a host of disabling conditions never changes. It is basic and demeaning "Is disability a fate worse than death?" In part, this ever present question is why I remain a staunch opponent of assisted suicide. The professionals charged with caring for my body wonder in the back of their head if I should be alive. Philosophers find this question fascinating. There are days it seems as though everyone wonders if my life is worth living. Sadly, it is impossible to get away from the question is disability a fate worse than death. This ableist trope is built into the fabric of society. It is impossible to escape the many varied negative assumptions made about disability. It is akin to a woman trying to ignore gender inequality or a black person trying to pretend racism does not exist. The difference for people with a disability is that our voices are not heard. Our civil rights are violated on a daily basis. There is no social mandate to support disability rights laws. This is done in the most cavalier way. I hear "I am sorry" all the time when I come across needless physical and social barriers. The sorry is not sincere. It is always thought to be a one off. Sorry you can't get in, sorry you can't get on the bus, sorry you can't get in a building, sorry there is no accessible table to sit at, sorry there is no accessible bathroom. The key word here is you. It is always you, you, you. Conspicuously ignored is that there are millions of people like me. We cripples exist. We exist in a world that is hostile to our existence.  A few illustrations, I hope will suffice. 

The curent president of the United States openly mocked a disabled reporter. 



Peter Singer, a so called moral iconoclast, and undoubtedly the most well-known philosopher today told fellow philosopher Eva Kittay, whose daughter has a severe disability, that she did not differ too much from a pig. He said this to her directly at an academic conference. 




Dominic Wilkinson published a book entitled Death or Disability? Like Peter Singer, he too wonders about the quality of life we people with a disability may or may not enjoy. Unlike Singer, he does not compare people with a disability to pigs. However, he had no qualms about the title of his book. Perhaps he assume people with a disability can't read. For when I bought his book, put it on my work table I could not bring myself to open it. I could think of just one thing: does this man think I would be better off dead? More to the point, how does this question affect the pre mature infants he treats as a neonatologist?




WBUR Common Health, a source for news, conversation, and smart analysis on all things health posted the below:



Here is the front page of the British newspaper, Daily Mirror. Clearly, using a wheelchair is a fate worse than death. This man's quality of life was so bad that death via assisted suicide was preferable to 10 years of disability.   



Disability is also effectively used to raise money.  The below was part of a slick and edgy fund raising effort for Toronto's Sick Kids Hospital. A child stands atop a pile of wheelchairs in victory. The child has clearly avoided an apocalyptic life. 



Hollywood has a long history of answering the question is life with a  disability worse than death. The answer is an emphatic yes. Killing disabled characters sells in Hollywood and insures box office success. This past summer people flocked to see Me Before You. In this disability snuff film the main character, Will, handsome, wealthy beyond imagination, and asexual decided  death was indeed preferable to disability. The tag line for the film was Live Boldly. Apparently this only applies to those without a disability. 



Disability is clearly a tragedy. Disability is often used to invoke fear as this Utah drunk driving campaign. 



Those that live without a disability blithely walk into health care settings with one concern in mind: getting better. When a person with a disability accesses health care they do so warily. Will a physician I have never met decide my life is not worth living? What sort of inappropriate assumptions will be made about the quality of my life? When it comes to mundane issues a person with a disability must navigate to end of life issues--health care professionals are asking all the wrong questions. We people with a disability are eager to engage health care professionals. Our quality of life is threatened but not by our dysfunctional bodies.  What we people with a disability cannot do is easily discernible. What is only rarely thought of is what can we do? The answer to that is simple--we are world class adapters. We are wildly creative in adapting to atypical bodies and navigating a world that is not designed for us. Better yet, we have much experience with the health care system and have unique insights that could be of benefit to all. Rarely are we called upon for our advice and council. Hence the slogan nothing about us, resonates too this day.

Because of the assumption that our lives are not worth living we are subjected to continual attacks. The social supports we depend upon are considered to be wasteful and unsustainable. In reality the fraud rate associated with federal and state support programs is remarkably low. With appropriate social supports we people with a disability can and do thrive. Yet that is not the cultural narrative expressed from the right wing FOX News to the supposedly liberal NPR. No one is asking exactly what sort of services can empower people with a disability to emerge from poverty and become employed tax payers. At present, support programs force people with disabilities to live on the edge of social and economic disaster. This leads me to suggest that instead of forcing people with a disability to fight to retain meager support we ought to guarantee and expand programs that empower us. If we people with a disability were gainfully employed, assured of accessible and affordable housing, and easy access to mass transportation and education the idea that death is preferable to life with a disability could be deemed wrong if not down right insulting. Perhaps what we should be asking is, if these services and supports were guaranteed, and we could be assured that we wouldn't become dependent on our family members for assistance, would people still see disability as a fate worse than death? I think not but change must be accompanied by a ground well of support. That ground swell doe snot exist. Indeed with Trump in the White House vulnerable populations are at the greatest risk I have seen in my life time. 

Tuesday, January 10, 2017

Streep Follow Up and Suggested Readings

My email box is filled with hate email. Trump supporters are decidedly unhappy with me. I expected some backlash because of my post yesterday but the level of hatred spewed was nastier than expected. I was deemed an "elitist scum bag", a "whiner who balks when treated like everybody else", a "liberal know nothing", a "crippled loser that should run home to mommy", and my favorite an "Ivy League pig who wallows in his own filth". Deleted were a ton of F bombs. What a world we live in. Bullying behavior is rapidly becoming the norm with the President elect leading the way via twitter and 140 character out bursts of petulant anger.

As I look outside, I see a steel gray sky and a mix of rain, ice, snow and sleet. Since this is Syracuse, much of what I see falling from the sky is moving sideways. On a day like this it would be easy to grow depressed. I have chosen to focus on the positive--specifically the many fine essays that have been written in the last 24 hours that address Meryl Streep's speech and criticism of the President elect. We people with a disability and our non disabled supporters have risen to the occasion. First and foremost, I am not alone. Streep's words have been deemed ableist by others. By itself, this is heartening. Second, like others, I hope we can move past the repeated and shallow discussion of Trump mocking Serge Kovaleski and have a detailed discussion about the barriers people with a disability encounter in the post ADA era. Foremost in my mind is the deadly troika--unemployment, lack of adequate housing, and long standing trouble using mass transportation.  These structural flaws lead people with a disability to live in poverty. Worse, our tattered and depleted social safety net demands that people with a disability live on the very edge of social and economic oblivion.

What people with a disability do have in abundance is the ability to adapt and be wildly creative. We are not the meek miserable beings typical others imagine. In the last 24 hours we have had much to say about Streep's speech and the President elect. Here then is a random sampling of essays that resonated for me:

Girlwiththecane, "Meryl Streep We Don't Need Your Outrage", link: http://www.girlwiththecane.com/meryl-streep/ The line "no power to fight back" is objectionable and disempowering.

Kim Saunder, aka Crippled Scholar, series of tweets, link: https://twitter.com/crippledscholar/status/818513044519194626 and a previous post about Trump, link: https://crippledscholar.com/2016/11/19/the-problem-with-paternalizing-disabled-people-to-protest-donald-trump/

A Washington Post article that covered the basics, link: https://www.washingtonpost.com/news/the-fix/wp/2017/01/09/meryl-streep-was-right-donald-trump-did-mock-a-disabled-reporter/?utm_term=.dbdb21a22115

David Perry at CNN, link: http://www.cnn.com/2017/01/09/opinions/streep-trump-real-talk-perry-opinion/index.html  Perry, whose son has Down Syndrome and writes frequently about disability rights, suggests Trump's bullying ways need to be replaced by empathy. I share this sentiment but have no expectation this will ever come to pass.

Emily Ladau, "Im a Disabled Woman Who's Not Celebrating Meryl Streep", link: https://theestablishment.co/im-a-disabled-woman-who-s-not-celebrating-meryl-streep-s-golden-globes-speech-8d67173122e7#.u68aexpsx Like me, Ladau tries to maintain a polite tone with regard to Streep's speech but is deeply troubled by just how mild her words were and how they lacked nuance.

Last and by far my favorite essay at Star in Her Eye, "Tumbling in America", link: https://starinhereye.wordpress.com/2017/01/10/tumbling-in-america/  As many people with a disability can attest, social rejection is rampant. In this post, Heather Kirn Lanier writes about how her daughter was social rejected by another child--the first such post election rejection. Placed in the larger social context she wrote it:

is the grade-school playground mockery of a person with disabilities. It is, as Ann Coulter unfortunately worded, “The Standard Retard.” “He was just doing the standard retard,” she argued, and if she is right, it makes matters worse. When our president-elect imitates someone he wants to mock, he sometimes uses his body to call them “retarded.” His limbs become the epithet. He makes his body odd-seeming, out of the norm, less-than-functional. This is ableism at the heart. The fact that he uses a much lighter version of this gesture on non-disabled people doesn’t make him any less ableist, any less offensive, any less cruel. I cannot, will not forget. And I’m grateful that Meryl Streep said the same at the Golden Globes two nights ago
Ableism at heart. Yes! Trump gives every bigot in America free reign to be cruel. Here Streep was spot on. "Disrespect invites disrespect. Violence incites violence." People with a disability know a lot about disrespect and violence. We are routinely disrespected. Indeed, disrespect is the norm. Violence too is the norm. Like it or not, we people with a disability are vulnerable. Abuse is rampant and takes many different forms. A month ago it was a cab driver who refused to pick up my colleague Steve Kuusisto with his service dog and was aggressively nasty about it. The same month I was mocked by some teenagers in downtown Syracuse who laughed and called me retarded. Bullies take many forms. Months ago unwanted help was thrust upon me not once or twice but three times by an employee at Liehs and Steigerwald Downtown and this veneer of good will turned instantly nasty and confrontational when such "help" was politely rejected. Instantly, I became a problem. Examples abound and I want to be clear I am lucky. I have not been physically assaulted. I have not been raped. I have not been assaulted by the police. And yes I fear the police. I cannot comply with their orders. I can not exit my vehicle as they would expect and demand. That alone makes me a threat. Kirn Lanier noted we have a lot of work to do. No kidding. What can we do? I honestly don't know. Trump is a serial abuser and bully. He has been elected President of the United States. He is the most visible man in the nation. Frankly, I am afraid. I am afraid of the hate and ignorance Trump generates and how that will play out on the streets, schools, and institutions that dot the cultural landscape. The is a first for me and I fear we will plunge into a Dark Age from which we may not emerge.  While this is a grim assessment, I know there is a vibrant resistance movement among my people. That fact alone is enough to keep my faith in people alive.

Monday, January 9, 2017

Meryl Streep, Ableism and Help

Social media as related to disability rights has been abuzz the last 24 hours. Meryl Streep's speech after receiving the Cecil B. DeMille award for lifetime achievement at the Golden Globe ceremonies is being lauded by many. Mainstream news outlets maintain she "brought down the house". Words such as amazing, inspirational, phenomenal etc are being used to describe her speech. It was without question a good speech. In a pithy 6 1/2 minutes, Streep took the president elect to task without mentioning him by name and did so with grace, dignity, and humor. Link to transcript: http://www.harpersbazaar.com/culture/film-tv/news/a19828/meryl-street-golden-globes-speech-transcript/ Streep stated:

There was one performance this year that stunned me. It sank its hooks in my heart. Not because it was good. There was nothing good about it. But it was effective and it did its job. It made its intended audience laugh and show their teeth. It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter, someone he outranked in privilege, power, and the capacity to fight back. It kind of broke my heart when I saw it. I still can't get it out of my head because it wasn't in a movie. It was real life. And this instinct to humiliate, when it's modeled by someone in the public platform, by someone powerful, it filters down into everybody's life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect. Violence incites violence. When the powerful use their position to bully others, we all lose. 
Streep's word fall flat for me and I many who champion disability rights. In no way do I take exception to what Streep had to say. She was spot on and it was an excellent critique of the President elect. It is not a new critique nor is it nuanced--and this is where my frustration starts. Trump's mocking New York Times reporter Serge Kovaleski is old news. It is widely regarded as the low point of the Trump campaign. Trump support took a steep drop in the polls after the video went viral.
In the months leading up to the election the Clinton campaign seized on the video and for the first time a mainstream candidate made disability rights a core issue of the campaign. Much more is involved here than the mocking of a single reporter with a disability. The mocking however is where the critique begins and ends. Think about Streep's words:

"out ranked in privilege, power, and the capacity to fight back"

"it broke my heart"

"I still can't get it out of my head" 

In my estimation, Streep's words are ableist in the extreme. They reinforce deeply ingrained ableist beliefs woven into the fabric of society. Disability rights and civil rights are rarely considered to be one in the same. Forty years of progressive legislation designed to protect the rights of people with a disability has yielded no social demand to enforce laws such as the ADA. The inclusion of people with a disability remains a problem. Hence my existence is a never ending problem that must be managed by others--typically non disabled others. The ordinary, even 26 years post ADA, is illusive. Every time I leave my home I must navigate a hostile world. The hostility takes a myriad of forms. Here in gritty Syracuse, snow removal on sidewalks is non existent. I can no longer navigate my way to the bus stop. Syracuse University spent millions of dollars constructing a promenade and, as one person humorously stated, it has more steps than an Irish folk dancer. When I stated the promenade was a symbolic fuck you to every person on campus that uses a wheelchair all I heard in reply was silence (and that silence included the university ADA coordinator). Syracuse University also dedicated itself to OrangeSUcess knowing it was inaccessible to blind faculty and students. The lack of inclusion is not limited to Syracuse. Barriers abound nationwide. Indeed, I encounter barriers, social and physical, every time I leave my home. Those barriers peak when I travel. Good luck finding an accessible bathroom. Good luck finding an accessible hotel room that is actually accessible. Good luck finding a restaurant that has wide enough aisles to navigate using a wheelchair. Good luck finding airline personnel that are not point blank rude. Good luck purchasing tickets to a concert or sporting event that do not involve calling a special number and paying box office rates.

Again, I appreciate Streep's passion and support. I agree whole heartedly that Trump has emboldened bigots and racists nationwide. Trump's reliance on hatred and ignorance has indeed filtered down to the rest of society. With regard to disability what I find fascinating are public myths versus reality. Like Streep I am broken hearted but for different reasons. The mocking of a reporter with a disability was perceived to be in exceptionally bad taste. There is the public perception that one must be kind to the handicapped. There is a hazy idea a law was passed long time ago that solved all the problems people with a disability encounter. Some people with a disability have "overcome" their disability but remain vulnerable and somehow less. Given our lowly status, Streep is broken hearted and cannot get the way Trump mocked a reporter with a disability out of her head. The reporter in question does not have the power, prestige or privilege of Trump. This line of reasoning is as ableist as Trump mocking a reporter with a disability.

What we people with a disability need is political allies. I for one do not need protection from bullies like Trump. I need steady employment. I need reliable and easy access to mass transportation. I need affordable and plentiful choices in accessible housing. I need equal access to our health care system. I need to leave my accessible home and not encounter physical and social barriers. My needs, the needs of all people with a disability, are no different than what typical others take for granted.  I also know I will not live to see the day when my crippled body is equal. In short, I am sorry Streep's words ring hollow. A 6 1/2 minute speech at the Golden Globe awards delivered to a room of A list celebrities is not going to change my life or the life of others with a disability. I saw a room full of privileged people and a stage that required Streep to walk up steps to access.

Imagine a different scenario. What if Streep spent 6 1/2 minutes addressing the fact Hollywood producers consistently hire non disabled actors to play the part of disabled people. What if Streep talked about this sort of "cripping up". I know she would not be lauded for her words. She would not be described as amazing and inspiring. Simply put, I am weary of heart felt emotions and the lack of social progress in the real world. For me, Trump mocking a disabled reporter has become a game of dodge ball. All express outrage--Trump mocked a disabled reporter. That is the start, middle, and end of discussion.

What we people with a disability need is a revolution. Our power is in our ability to adapt and press forward. We are remarkably creative people routinely underestimated by others. Our lives are not bleak nor are they devoid of work, friendship, love and sex. We are humanity reduced to its most basic elements and as such we are feared. The resulting disempowerment via unemployment and the lack of accessible housing and transportation is a deadly mix that is a human rights crisis no one talks about (exceptions exist of course). What we people with a disability want to do is the work of science fiction novelists. We want to build a better world for all people. We don't need nor desire pity or charitable efforts. We have no special needs nor do we need special education. What we need is the imagination to think and dream of a society that is inclusive and values our existence.

I just cannot bring myself to feel the warm glow of Streep's words.  I know I am not alone. Many people with a disability have acknowledged Streep's speech was excellent but that it failed to resonate. Link: https://storify.com/emily_ladau/why-i-m-not-celebrating-meryl-streep-s-mention-of- I look forward to reading what other activists and scholars will write in the coming days. What I fear is ingrained ableism. I have done my level best to maintain a respectful tone in this post. For I know one must not bite the hand that feeds you. That old phrase often gets trotted out when a person with a disability such as myself has the audacity to comment on the efforts of non disabled others who want to help. Sadly, I have learned not to trust those that want to help. For example, non profits abound that are designed to help people with a disability. The vast majority of them have no employees with a disability nor is a person with a disability on the board of directors. That sort of socio-economic structure is objectionable to me. What I need help doing is inciting a wildly creative revolution. I know for sure what I want to do cannot be done alone. I am not turning my back on Streep and others who support disability rights. Our freedom and civil rights are intertwined. What I ask is simple. Do not ask me when will I be satisfied about the status of disability rights. I doubt I will ever live to see the day I am satisfied. My words here put me in the company of the great Martin Luther King whose famously noted in his 1963 Letter from a Birmingham Jail that an injustice anywhere is a threat to justice everywhere.

Thursday, December 29, 2016

Nancy Mairs and Cripple Swagger

It was great sadness that I read Nancy Mairs died. When I heard the news I instantly thought of her classic essay "On Being a Cripple". Mairs essay is a classic piece in the small world of disability studies. I recall reading the essay when it was published and being enthralled. She wrote "As a cripple, I swagger". Like Mairs, I use the word cripple to describe myself and my people. I am a cripple. When I use this word typical others get very uncomfortable. My niece who works in adaptive sports was appalled when I self identified as a cripple. She looked at me with great compassion and said "Oh, Uncle Bill". I consider her the rock star niece of the family. Maybe it is because more than any other member of my family she gets disability. She does not like the word cripple for the exact reason Mairs myself and many others with a disability embrace it--the word makes typical others uncomfortable. The word stops people. It is easy to gloss over the words disabled and handicapped. The same can be said for special needs and special education. I want people to know I am a hard man. I am hard because American society is hostile to disability rights. The ADA is 26 years old and there is no social mandate to enforce the law. Worse, the ADA has been under relentless attack since the day it was passed into law. This December 60 Minutes just aired an irresponsible and wildly wrong attack on the ADA. I am sure it garnered good ratings and empowered ableist bigots to rail against disability rights.

As I have thought about Mairs death from enforced bed rest due to skin woes, I wondered why I am drawn to the work of so few people associated with disability studies. I have wondered about this for many years. Disability studies scholars are my kind of people. I should be enamored with the field. This is not the case. I find the field insular. I am a rarity in disability studies and bioethics in that I have a Columbia University PhD and long track record of publishing essays in host of peer reviewed journals. So what is my problem with disability studies? Too few scholars want to change the cultural landscape. People with a disability remain marginalized in great numbers. We are also unemployed in most cases. We are not remotely equal to typical others. No doubt the law is on our side but typical others consistently frame disability as a medical problem.

When it comes to disability, history demonstrates effective change takes place via direct confrontation. Far too few in the field of disability studies are willing to be confrontational. Far too few push back against rampant ableism in their work and life. I read many fine theoretical texts in the field of disability studies. They are a challenge and intellectually stimulating. They will earn young scholars a tenure track job but I often find myself wondering how will they empower your average person with a disability? Not at all. With Trump as president elect, every vulnerable population is at risk. I am worried about myself and health insurance. I am worried about a small wound that has forced me to bed rest. I cannot afford the wound dressings that will enable me to heal as fast as humanly possible. This will make my enforced bed rest last weeks longer than it should. I look at my wound every day and wonder why are so few scholars in the field of disability studies engaged with the real world struggles of your average cripple.

How does one change the cultural landscape? For Mairs, it was writing in a way that defied stereotypes. She was, as all humans are, a flawed person. She was diagnosed with MS at 29. Mairs struggled with depression. Maris wrote about what it felt like to feel suicidal. She wrote about being a "bad" wife and bad mother. She wrote about her husband's cancer and his infidelity.  She was not an archetype. She was not a super cripple. She was as flawed as the person standing next to her. She wrote "there are rewards for making the world physically and emotionally accessible to all people, including benefits that accrue to society as whole. The more perspectives that can be brought to bear on human experience, even from the slant of a wheelchair or a hospital bed, or through the ears of a blind person or the fingers of someone who is deaf, the richer that experience becomes". 

Like Mairs, I struggle with my body. My body is wildly dysfunctional and different. When she wrote "I am appalled by my appearance" I instantly felt a kinship. Unlike Mairs who "devoted an absurd amount of time and expense to its decoration" I have no such desire. While part of me is indeed appalled by my body, another part is proud of what my body can do. And here I know I am privileged. I can all my own body care. I am not physically dependent upon others and my life trajectory in every way is radically different from someone who needs help with the the ordinary.

Last night as I was reading Mairs memoir, Waist High in the World, I was reminded that we may celebrate those whose are physically perfect and wealthy (super models and professional athletes for instance) and what those perfect bodies can do those of us who are obviously imperfect and crippled can lead authentic and valuable lives. This is the heart of the problem with disability studies. There is a disturbing lack passion and engagement. Scholars care deeply about heir work. This I do not question but do they care about your average cripple? Do they care about a crippled person who has not been out of their house in years? Do they care that getting a properly fitting wheelchair can take years? Do they care I cannot access to basic health care is exceedingly difficult? Do they care that the mass transit system is difficult to access and para transit is inherently flawed? Do they care about the unemployment rate of 66%? Some do. Many do not. The privilege associated with the field is deeply troublesome. I go out of my way to be an advocate as well scholar because I have had a privileged upbringing and education. My advocacy has without question hurt my academic career. I know I am instantly dismissed from applying to some jobs because I advocate against assisted suicide legislation. The point here is that when the field of disability studies was created advocacy and scholarship went hand in hand. Today they are two very different worlds. Scholarship and advocacy can live in harmony. Some scholars have achieved this. Mairs did it. I am doing it. My deceased disability forebearers did it--people like Ed Roberts, Robert Murphy, Harriett Mcbride Johnson, Helen Keller, Mark O'Brien and many others whose legacy is largely unknown.

Only one thing surprised me as I read Waist High in the World. I forgot how nuanced her writing was on end of life, euthanasia, and assisted suicide legislation. Her words struck home as I am currently dealing with a wound that has made life come to an abrupt halt. What I have lost is a measure of control. I do not go anywhere. Others shop for me. I am without question dependent upon others. I will remain dependent upon others for many more weeks. I am isolated to a degree. Enter Mairs:

I want to be the one in charge of my life, including its end, and I want to to be able to enlist someone to terminate it if I choose "rational" suicide. I have a friend, a doctor whom I admire deeply, who has told me about assisting a patient, irreversibly ill and on a ventilator, to die. Listening carefully to the man's clear and repeated requests, calling together his family for their last goodbyes, administering a shot of morhphine to ease his passage, turning off the ventilator, remaining with him until he had gone. I would hope to find someone as brave and compassionate if I were to make a similar appeal.

Superficially it would appear Mairs is in favor of assisted suicide. This is not the case. To a degree the words above are a romantic ideal about the end of life. Written in 1986, much has changed. My students have no idea who Jack Kevorkian was. Today, a person's physician who has followed their care for many years is replaced by a hospitalist when admitted to a hospital. Continuity of care is absent in the name of efficiency. The point Mairs was making was about control. Mairs wanted a degree of control about her care and eventual death. She rejected any and all crusaders for euthanasia and assisted suicide. She identifies Dr. Death a.k.a. Jack Kevorkian as a crusader. She astutely rejected any advocate for assisted suicide because they are not looking after an individual approaching end of life but rather have an agenda. She also knew how physicians frame end of life as a failure.

Doctors despise disease, or else they wouldn't become doctors, and I have heard of those who couldn't bring themselves to tell a patient she or he had multiple sclerosis because the diagnosis seemed too horrible to bear. Isn't a doctor suffering from this kind of anxiety all too likely to tell me "You have MS? Of course you want to die! Here, let me write you a prescription so you can peacefully end it all".

Mairs knows, as do those who oppose assisted suicide, that all the safe guards in the world are inadequate. Mairs knows as do I that regulation cannot eliminate "subtle pressure to end a life perceived by others to be insufferable. If, ideally I ought never to to have been born, and if my dependent existence creates a burden on those who must care for me, then don't I have not merely the right but the obligation to die? How can I honorably choose  otherwise? 

What Mairs has eloquently done is to acknowledge what slick efforts to pass assisted suicide legislation seek to dismiss.

My concern is that these issues be confronted  in such way as to create a social climate in which people with disabilities perceive life to be an honorable choice. And that means sending the social message that disabled people are valued and valuable, precious even, by investing in, financially and emotionally, in institutions and practices that help them out.

We are not interested in helping people with a disability lead a rich and full life. Social supports come with strings attached. Worse, if you need social supports you are an economic burden on society. I know this to be true because total strangers on Syracuse city buses tell me so. Depend upon Social Security Disability leads to a life on the edge of economic oblivion. We have a president elect that openly mocked a reporter with a disability. Paul Ryan wants to repeal or revise the Affordable Health Care Act. What reigns supreme today is hate and ignorance. That is why people such as myself were shocked by the election. We people with a disability and other vulnerable populations are hated. Strangers hate me. Emboldened by a bullying president elect and republican controlled house and senate ableism is rampant. Hate crimes are increasingly common. I need not go on. Those who are vulnerable get the message.

Aside from my life coming to a halt, reading Mairs made me realize a harsh reality. It is likely I will get a wound that will not heal. That wound will require expensive care that will not be covered by health insurance. I have been down this road. In 2010 I had the support of my family and without their support I would have died. I no longer have any familial support. In 2010 I knew I was burning a bridge. I was completely and utterly dependent upon family for financial and physical support. I know I am on my own now. I can survive a few weeks but if I get a wound that fails to heal I will die. I will die because we as a society have chosen not to do what Mairs thinks should be done--provide adequate social and institutional supports to empower people with a disability the time to heal and eventually thrive. Grim thoughts as 2016 comes to an end.

Thursday, December 8, 2016

Silence, Hatred and Ignorance

It has been four weeks since I have put up a post and a few people are reaching out to me asking if I am alright. The short answer is yes. The long answer is I have health care woes and am experiencing significant pain as a result. My skin woes require me to remain in bed and keep all pressure off a wound. My time sitting is severely limited and I am dependent upon others to do mundane chores for me.  I am also having a hard time accessing basic health care. For example, without a referring physician no local wound care department was willing to set up an immediate appointment. I was offered an appointment in many weeks but had an immediate need to deride a wound. Unwilling to risk a visit to the ER I debrided the wound myself. This was a bloody and somewhat traumatic experience. Essentially I performed bed side surgery.

At present, my life is severely limited. I do not sit up for more than 90 minutes and am essentially bed bound. By itself, this brings back  flood of unpleasant memories circa 2010 when a wound almost ended my life and required me to spend an entire year in bed. While I am not enduring anything close to what took place in 2010, I am miserable. Imagine this. You feel great. Life is good. Work is rewarding and your life is rich and full. Your calendar is packed. Then you see not one but two skin breakdowns and as an added bonus your anus feels like it is on fire. A mirror reveals a small but significant wound. The cure, bed rest, will without question work. The key to healing is pressure relief and elevating your feet. I am not at all worried about healing. I have been down this road before. I do worry about my mental health. Being in bed all day is mind numbing. Hence when I read Atul Gawande's Being Mortal in preparation for my class on disability and bioethics his words deeply resonated. I am feeling my mortality and experiencing what he identified as the three plagues denizens of nursing homes experience; boredom, loneliness, and helplessness. I am bored, lonely, and feel helpless. The rational part of my brain acknowledges this is a short term problem. I am likely going to be healed by the end of December. I know all too well wounds can be life threatening. I also know I am extremely lucky. I have two roommates and my son nearby who have done all my errands. I live downtown and a few friends have visited me. I am not good company and prefer to be alone. Those that have visited know me well and do not stay long. Their presence is greatly appreciated.

Based on previous experience, there is one effective means of adapting to my current situation: I shut out the world. I cancelled all plans from Thanksgiving to January 1. Everyday I wake up look around my room and know I am exceptionally lucky. I have 35 plus years of experience healing wounds and adapting to pain. I let the pain sweep over me and embrace it like a long lost lover.  I constantly remind myself I have not been forced into a nursing home. I am not eating institutional food. I am not dependent upon uncaring others who are poorly paid and over worked. I am not isolated like I once was in Cazenovia. My current living situation is ideal. I am not a significant burden upon others. I carefully navigate who I ask for help as I know I am going to need assistance for many more weeks. I am living the theory of situational autonomy. As a scholar, I can function from my home. I am not in fear of financial ruin. Debridement was successful. My skin will heal. It is not a mater of if it will heal but rather when. My estimate that I will be healed by January 1 may be correct. It may be wrong. Healing a wound is as much art as it is science.

Back to Gawande. I am experiencing the three plagues. I am bored. I am lonely. I feel helpless. I teeter on the edge of clinical depression. The days go by in a blur. I accomplish little. I see the hard earned muscular development I worked so hard to acquire all summer on hard charging hand cycle rides fading away. I desperately miss walking my beloved and recently deceased lab Kate. I miss my walk to the bus stop and commute to campus. The bus ride is an ever present reminder that poverty is rampant. In short, I miss my usual active life. My daily existence is purgatory-esque. Again the rational part of my brain knows I am in a liminal state. In a few weeks I will wean myself back to what passes for normal when you are paralyzed. None of this helps in real time. I leave my apartment twice a week to teach. That will end when I teach my last class of the semester and await finals to pour into my email box. I am comforted by the knowledge my class went very well. For the first time, my honors students took chances and did truly original work. This is beyond satisfying.

The knowledge Christmas season is upon us does not help my spirits. I dread Christmas and the season of false good cheer. Oddly, my wound came at the perfect time. I have an excuse to keep myself locked up and avoid the revery associated with Christmas. I can be a grinch in private. Hence I find some comfort trapped in my apartment. An additional bonus is that locked away, I am not forced to deal with the fall out of the Presidential election and the shameful result. I was so naive. I had faith in American people. Other demagogues have run for president and been soundly defeated. I refused to believe once a citizen entered a polling station they could in good faith vote for Trump. To me, the election was about electing a professional seasoned politician or a TV reality buffoon. There was no choice. Alas I was wildly wrong. I hope those that voted for Trump are happy. Each and every vote for Trump was a vote for hate and ignorance. In the ensuing weeks incidents of violence toward marginalized peoples has increased. All those I know who are vulnerable report a significant increase in hatred spewed their way. An ignorant bully is president elect. As the nation's "leader" Trump has emboldened bigots nationwide.

I am not being overly dramatic about the dire cultural consequences of the election. Trump's victory will have disastrous consequences for vulnerable people. I will suffer. My fiends will suffer. Some people with a disability will die via budget cuts and an all out effort to undermine disability rights. All minority groups are at risk. There is no need to read the many grim reports about the future Trump administration. My concern is greater. What are the cultural consequences of having elected a demagogue who is entirely reliant on hatred and ignorance? For my good friend and fellow scholar Stephen Kuusisto the consequences were very real and shocking. Kuusisto did the ordinary. Preparing for a trip from Syracuse to Ann Arbor Michigan he called cab company. This is a mundane and short call but not for Kuusisto or any other person with a guide dog. At Planet of the Blind he wrote:

In a mood of warm anticipation, packing for my trip from Syracuse to Detroit, I was wholly unprepared for the mean spirited encounter I had by phone with a cab company in Ann Arbor this afternoon. Just recounting what happened is an exercise so objectionable I’m forced to be brisk as the altercation was nasty. I told the man who answered the phone I needed a ride from Detroit-Ft. Wayne airport to the U of Michigan. He was agreeable. Then I said I had a guide dog. He was disagreeable. He said:
“These dogs are stinky, they go to the bathroom, they’re dirty, I can’t have them.” “Not the first time this has happened to me,” I thought. “Guide dogs are allowed everywhere,” I said. “I don’t care, now you’re going to tell me all about your rights,” he said. (Sneering, he was. Your rights…uttered as if I was some whiny baby. “Well yes,” I said, “it’s a violation of state and federal laws to deny a blind person and his dog a cab ride.” “I don’t care,” he said. “You should care,” I said. “It will become a big story. Plus there’s a huge fine associated with this.” “I don’t care,” he said. “This will become a news story,” I said. “I myself write for newspapers like the New York Times…) It’s hard to describe the effect this had on him. He began shouting that Donald Trump had won the presidency and “you people” (apparently meaning blind New York Times readers) “don’t matter anymore.” He was absolutely vicious and crowing about how people like me don’t matter. I said, “well, I’m going to turn you in to the Department of Justice.” He said he didn’t care. I hung up. Link: https://stephenkuusisto.com
As many moving memoirs written by people with a disability reveal, beneath the thin veneer of "be kind to the handicapped" bubbles a sea of animosity and outright hatred. I have heard the sneering phrase "you people" many times. This animosity is expressed when a person with a disability asserts their civil rights. People with a disability have no rights. The very idea of disability rights as the equivalent of civil rights is often met with hostility. Many a time I have been told "no one ever burned a cross on your lawn".  This is correct but that does not mean I welcome in any town or city in America. Take an old impoverished city like Syracuse. 95% of housing is not inaccessible.  I am told "its an old city" and this too is correct. This observation does nothing to enhance my housing options. Worse, Syracuse University has no accessible housing for visiting scholars with a disability. This is a blatant form of discrimination and the university has no plans to make faculty housing accessible. The assumption is we cripples are not professorial material.

The nasty exchange Kuusisto experienced was unnecessary. The man on the other side of the phone was empowered by hate and  ignorance. He chose to be nasty. He was politely warned he was breaking the law. He did not care. He chose to denigrate a poet, scholar, and disability rights activist. This is not an isolated incident. It was not a fluke. It was not one man having a bad who decided to be as mean spirited as humanly possible. Every person with a disability I have met have had similar experiences. Such disturbing interactions occur most frequently when people with a disability travel. The airline industry despises passengers that use wheelchairs. Cab companies hate blind people who are part of a guide dog team. Kuusisto has filed a formal complaint with the Deparment of Justice. As I told Kuusisto the day he was harassed that "the man fucked with the wrong person". Like me, Kuusisto refuses to bow before such bigotry. We stand tall and assert our civil rights. This makes us decidedly unpopular. I am repeatedly told "I have a chip on my shoulder". That is correct. When my civil rights are violated I get angry. My anger is righteous. My anger has nothing to be with the fact I cannot walk. My anger is related to living in a world that is hostile to my presence. I am far from alone. Any person with unusual anatomical features attracts unwanted attention.

What typical others do not grasp, is the psychic toll involved when an angry confrontation takes place. After his call Kuusisto was shaking. I have had comparable experiences. Such bigoted calls beget more phone calls in order to report the incident. One then must follow up in writing because bigots have a penchant for denying such exchanges took place. The airline industry specializes in violating the Air Carrier Access Act and creates a paper trail to make it appear as though an incident never took place. Thus when an airline breaks a wheelchair as they often do, one must provide photographic evidence.

Back to Kuusisto. He ends his post in a devastating manner that had me shaking.  He wonders: Is Trump’s ascendancy now a patented script? If you hail from a historically marginalized group you know the answer." Ask any Hispanic kid in secondary school who has heard the chant "build the wall". Ask any woman who has heard misogynist comments directed at her. Think of Trump calling Hilary Clinton a "nasty woman". Ask any person who has a different body and requires the most basic reasonable accommodation. Ask anyone in the LGBTQ community that has the audacity to defy accepted stereotypes associated with gender and heterosexual norms. I know the response without asking. We marginalized people are afraid. I am afraid I will no longer be able to have health insurance given my pre existing condition. I am afraid of the kind physician I have never met that will decide I have suffered enough. I am afraid of the bigots in Syracuse that call me a retard and laugh hysterically. I was shocked when I got on the bus a few months ago and a person refused to move telling me "you people are an economic drain and leech on society". Remarkably, I have heard this before and much worse. 

I started this post last weekend. Since then 60 minutes aired a vicious attack on the ADA. I do not have the heart to provide a link as it is one of many such attacks undertaken since the ADA was passed into law 26 years ago. Aside from my fear, I am truly worried we as a nation are slipping into a Dark Age. Facts no longer seem to matter. Anything goes. Our president elect openly mocked a reporter from the New York Times and stated that he can grab any woman by the pussy because he was famous. Millions of people voted for this man. We now have a professor watch list and a new era of McCarthyism. A tidal wave of anti intellectualism is upon us. Young people, the students I teach, are screwed. They work hard, earn a BA and many are unemployed or work in dead end jobs. None of these observations are original and they make being trapped in bed seem appealing. What does the future hold? Kuusisto thinks "you can bank on what’s to come: elimination of more voting rights, destruction of women’s rights, piece by piece, deportations and unlawful arrests, a significant boost to the school to prison pipeline, toxic water and air—the list is too long for a customary sentence in the English language." These thoughts are unsettling. I do not sleep well. I am ashamed of the American people. We allowed the Presidential election to be turned into a TV reality show. We elected a man who creates one false narrative after another. The next four years are going to hard. The nation is being led by a bully who twists the truth to suit whatever whim struck his fancy. Scared, afraid, and depressed. My mood fits the times.