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Monday, May 21, 2018

Sometimes Paralysis Sucks

Yesterday was unpleasant and uncomfortable. Like many people who survive and thrive with paralysis, I have multiple secondary complications associated with a severely damaged spinal cord. I have a long history of skin break-downs. Indeed, I had one wound that almost ended my life in 2010. Within the last year, I have developed a serious heart condition and take what seems to me to be far too much medication. Every time I organize these medications it is sobering to read "take daily for chronic heart failure" or "for pulmonary edema due to chronic heart failure" or take one tablet for "hyperlipidemia". When I read this I am all too aware of my mortality. I am also aware that heart failure is common among people who have lived decades after a spinal cord injury. For me, living for decades on the edge of dehydration because bathrooms are rarely accessible has taken its toll. In short, like millions of others, I am living with chronic heart failure. But here I digress.

Yesterday was bad because I was cold. I was not cold in the typical way the average human with a functioning spinal cord gets cold. My autonomic system is dysfunctional. As a result my ability to feel the cold is seriously impaired. Unlike most people with a spinal cord injury, I love the cold and hate the heat. The cold and rigorous exercise makes my spasticity go away. My legs which typically have significant tone turn to jelly for hours after I am done skiing, biking, or kayaking. Yet I also experience another kind of cold unrelated the temperature outside. I can feel bone-chilling cold for hours. Many paralyzed people know this feeling. The cold I feel is hard to explain. If we humans have an internal thermostat, mine is dysfunctional. Yesterday I felt bone-chillingly cold for hours on end. The cold I felt was exhausting. Thankfully what I experienced yesterday was uncommon. I know that at some point my internal thermostat will return to what passes for normal. I also know I am very lucky. I have never experienced autonomic dysreflexia a potentially fatal condition associated with high level of spinal cord injury (generally above T-6). I simply do not get urinary tract infections and do not have kidney disease or bladder issues. I do not have a long arduous bowel program. The circulation in my legs is quite good thanks to excellent vascularization. The neuropathic pain I experience is not overwhelming and does not affect my life-style. In short, the serious complications associated with paralysis are relatively minor. With an acute awareness of my body combined with decades of bodily management free of well-meaning but ignorant physicians who know little about living with paralysis I am in good shape. Yes, I am one lucky paralyzed man. That is my mantra after bad days--and yesterday was bad.

Despite my bad day, I still marvel at my body. It has been through the wringer. I often wonder how have I survived into middle age. I never thought I would turn 21 years of age much less settle comfortably into my 50s. I survived three massive spinal cord surgeries as a teenager, dozens of spinal taps and countless medical procedures as a child, a stage four wound on my hip, and a heart attack.  This cavalcade of medical woes has not diminished the feeling that my body has exceeded my wildest expectations. Whereas typical others see pathology and the medical industrial complex seeks to cure me, I feel victory. I have survived and lived and loved and worked and enjoy each and every minute of the day. More than many, I know life is a gift--one that is all too short. I know people don't want to know my reality. They take one glance at me and know everything. Assumptions are made, expectations are non-existent. My competence is open to question. Can I cross the street by myself? Can I get in and out of a car and drive? Can I have sex? The bar is set very low when one uses a wheelchair. My visceral experience living in a dysfunctional body is dismissed by most. When I point out that my body has adapted marvelously this observation is instantly dismissed by healthcare professionals and society alike. When I express delight about what I can do, my efforts are reduced to nothing more than a feel-good moment or the ridiculous notion I have overcome my disability. More than once when I expressed pride in what my body can do I have been tapped on the head like a child. Some of my academic peers, especially those in bioethics, are decidedly uncomfortable in my presence. Utilitarian philosophers of the Peter Singer type think all things considered it might be better off if I were dead. Those in favor of assisted suicide find my opposition tawdry if not somehow intellectually unbalanced. I am told repeatedly not all people are capable of living with a disability. Such ableist beliefs are rampant in the academy. If you doubt me read the insightful Academic Ableism. In response to such ableism I am supposed to have a good-natured philosophical debate? I am not Harriet McBryde Johnson who famously and politely debated Peter Singer at Princeton University. Sorry but no. I am too old and crusty to engage in this sort of collegial exchange. I can be polite but there is a line I refuse to cross. I simply refuse to be denigrated and judged. I decry the human penchant for snap decisions and reliance on worn out stereotypes.

Wednesday, May 2, 2018

David Goodall: Dying in Support of a Media Campaign

In the last 48 hours dozens if not hundreds of newspaper articles have superficially covered the pending death via euthanasia of David Goodall, an 104 year-old Australian scientist. Described as Australia's oldest scientist, Goodall wants to die. To do so, he is going to travel 8,000 miles to Switzerland because assisted suicide laws in Australia are limited to those who are terminally ill. Exit International, a euthanasia advocacy group, has created a Go Fund Me page on behalf of Goodall. The Exit International website bemoans the fact Goodall cannot end his life in Australia stating it is unjust one of the nation's "oldest and most prominent citizens should be forced to travel to the other side of the world to die with dignity. A peaceful, dignified death is the entitlement of all who want it. And a person should not be forced to leave home to achieve it"."

Goodall himself has been repeatedly quoted in news reports. The most commonly used quotes are as follows:

I greatly regret having reached that age. I'm not happy. I want to die. It's not sad particularly. What is sad is if one is prevented. 

My feeling is that an old person like myself should have full citizenship rights including the right of assisted suicide. 

To be perfectly clear: Goodall is not objective nor am I. Goodall has been a member of Exit International for over two decades. He is good friends with the controversial founder of Exit International, Philip Nitschk. In sharp contrast to Goodall, I am opposed to assisted suicide. I am also a Board Member of Not Dead Yet, a grass-roots organization opposed to assisted suicide and euthanasia. The difference between myself and Goodall is that I am above board with my association with Not Dead Yet and views on end of life. Many newspaper articles fail to mention Goodall is a long time member of Exit International and advocate for assisted suicide and euthanasia. Almost all newspaper articles fail to discuss the fact the Goodall's desire to die is as much about advocacy as it is about his death. Goodall's impending is in reality a carefully crafted media campaign in support of euthanasia and assisted suicide pushed by Exit International. My first thought when I read about Goodall was this is an Australian twist on the Brittany Maynard media campaign orchestrated by Compassion and Choices in 2014. For those unfamiliar with Maynard here is a link to Wikepedia: https://en.wikipedia.org/wiki/Brittany_Maynard      

The newspaper stories about Goodall uniformly support of his desire to die. The stories are puff pieces--the sort of human interest stories mainstream news outlets churn out on a daily basis. For example, a story in the Boston Globe began as follows:

Champagne bubbles danced in fancy glasses and birthday candles burned atop a cheesecake marking 104 years of a long and accomplished life. David Goodall listened quietly as his loved ones started to sing. Then he took a breath, made a wish, and blew out the candles. Link: https://www.bostonglobe.com/news/world/2018/05/01/scientist-just-turned-his-birthday-wish-die/kSl68UbczXxQIMtLOBHuNL/story.html?event=event25%3Fevent%3Devent25#comments

I never cease to be amazed by the never-ending stream of stories that praise and support those that want to end their life via assisted suicide. I am equally puzzled by the way end of life is routinely framed as a human right. I read again and again about people who want to control the circumstances of their death. We already have that right and, more to the point, death is not a right but rather a biological certainty. Any and all medical treatments can be accepted or declined. Any person can deny medical treatment that will result in the end of life. Hospice care can and is often provided. For zealots, VSED (Voluntary Suspension of Eating and Drinking) is a legal way to end one's life. I see no reason for legislating end of life legislation in the form of assisted suicide.

My opposition to assisted suicide makes me decidedly unpopular if not a threat to others personal autonomy. Somehow in opposing assisted suicide I am imposing my will and beliefs on others. Even polite criticism is met with the harshest rebukes. Opposition to assisted suicide is somehow seen as in bad taste--a characteristic of an unreasonable person. When I state my opposition to assisted suicide people are perplexed. Why they wonder would anyone be opposed to assisted suicide? Do I want people to needlessly suffer? Am I a heartless uncompassionate person? Some people become confrontational and nasty. I have repeatedly heard others tell me "Just because you want to live with a disability does not mean others want that life". Unsaid is the assumption my life is miserable and less valuable. Also unsaid is that I must be leading a life filled with pain and misery. Nothing could be farther from the truth.

Given the cloak of anonymity, the real daggers come out for those that dare oppose assisted suicide. Death is a human right and disability is used to justify assisted suicide. Here I want to delve into the comments section in the Boston Globe article linked above. 

In the comments section one finds the following:

I know that when my mother lost the ability to read because of failing eyesight, a certain pall entered her life. Born in 1903, she was the oldest of thirteen (eight of whom survived), a woman with a sixth grade education who left school in order to help care for siblings. She was not a renowned scientist who derived what pleasure was left in his life by continuing to teach. Loss of sight, loss of the ability to securely move and loss of a sense of usefulness can certainly result.

When one commenter had the audacity to note the elderly were devalued and the article was a tragedy others responded with force.

Preventing by law anyone who is rational from making the decision to abridge his pain or shorten the dying process IS THE DEVALUING of the value of the individual....His life belongs to him and if he wishes to avoid another few years of disability that SHOULD BE HIS CHOICE. Do gooders saying he should be deprived of that choice and placed in a nice nursing home to be spoon fed...THOSE are the people devaluing this old man's value and standing as a rational individual.

you know what is MORE "devaluing"? Letting this man, against his own will, mind you, slowly decline into decrepitude, into being an invalid. THAT is devaluing his life more than anything else. You want to be respectful of the "value" of older people in society? Then treat them like cogent adults and respect THEIR wishes how they want to move on.

It is not about society, it is about ourselves. It is not about devaluing people who are elderly, it is about human existence and human choice which the government or church has no right to impose upon. This was not "an utterly tragic article", it was illuminating in helping people to be educated and be more informed in why some people may choose to die rather than live.

Aside from being blind using a wheelchair also justified assisted suicide.

he should be able to die now if he chooses to and not spend his last short time in a wheelchair, wearing a bib, Depends, and drooling into his lap.

Depression is dismissed out of hand:

He doesn't sound depressed, he sounds totally rational and reasonable to me.

You have outlived everyone you love, you don't have the physical ability to go or do, people treat you like you're mentally incapacitated, and you're not enjoying your days. It's up to you to decide you're over it, not the government.

It's ridiculous that he has to go to 8,000 miles to end his life. Sweet dreams!


In a comment that questioned the need for assisted suicide a person replied:

That's fine that you have your own opinions but don't try to label those that wish to have doctor services for dying with compassion...We simply have compassion for those who desire to die, you, on the other hand, want to judge others who you have no idea about...Why do you have to be so brutal with people you don't agree with?

When it comes to end of life people in my experience either ask all the wrong questions or do not ask any. I understand this to a degree. Americans are scared to death of dying. Too many die in nursing homes or hospitals. Our health care system does a dreadful job at managing death with grace and dignity for all involved. Here is what the average perosn fails to realize. In the words of Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center:

In truth, my colleagues in hospice and palliative care represent the most genuinely Pro-Life segment of American society. An unwavering affirmation of life leads most of us to oppose legalizing assisted suicide and euthanasia. But it is not about politics. It is simply that love of life--not in the abstract but love for the people we care for as patients--is the reason we do what we do. People who work in this field understand that to truly affirm life, one needs to affirm all of life--and that includes the part we call dying. 

Affirmation of life. All life. I, a severely disabled man, have a life worth living. This is not about politics. This is not about religion. This is not about imposing beliefs on others who feel differently. The dying have a right to live a good life until that is no longer possible. This is waht se should be talking about.

Friday, April 27, 2018

Academic Ableism at Syracuse and Beyond

Yesterday I read a hard-hitting email sent to Syracuse University faculty listserv written by Stephen Kuusisto. My first thought was this will not be well received by faculty and administrators. What Kuusisto wrote was direct and briefly outlined why Syracuse is a hostile environment for students and faculty members who have a disability. In response to his email, today Kuusisto wrote:

Because racism, ableism, homophobia, misgogyny are rampant right now at Syracuse University (the story broadly told) I feel unwelcome on campus. I’m blind and have struggled to get basic accommodations as a faculty member for seven years. When I speak about this I’m largely treated to double talk. It’s too hard for this university to make books and articles accessible in a timely way. It’s too hard to assure that sighted support is available to the blind. I’ve been told these things and if I’m hearing them I can only imagine what disabled students are experiencing. Except I don’t have to imagine. They tell me. They tell me over and over what a mean spirited place SU really is.
Yesterday I was told to be quiet. My mistake? I posted a cris de coeur about these problems on a departmental listserv. I was told that my opinions offended people.
That’s of course how ableism works. It offends the ableists to know they’re part of a structural system. They think themselves liberal, progressive, tolerant. Blaming the disabled for calling attention to the problem is Ableism 101.
I said I’d never post to the departmental listserv again.
But I won’t stop talking about the ugliness of higher education and disability discrimination. I won’t. Link: https://stephenkuusisto.com/2018/04/27/7712/
If there is one trait Kuusisto and I share as pre ADA cripples it's that we came of age before the law was on our side and as a result we are persistent. Neither Kuusisto nor I will ever give up. He and I and others will relentlessly bang at the front door of academia and push for inclusion. I, for one, cannot stop. I will not give ableist bigots the satisfaction of winning. But the point must be made that academic ableism is not limited to Syracuse University. Academic ableism is rampant at every higher educational institution in the nation. The veritable Ivory Tower looks down upon those with a disability that want to receive an education and those who want to teach, write, and research.

My liberal hard-working nondisabled colleagues will disagree with the above. As Kuusisto wrote, they will even be offended! If we are going to talk about offensive let's get to it. I have had the following experiences in the hallowed halls of academia.

Last summer I was a seminar leader in a bioethics intensive program at Yale University. There was no accessible bathroom in the building where we met. I had to dehydrate myself daily. The nearest bathroom was two blocks away. To enter the building the automatic door opener was broken. It took a week to repair.

At Syracuse University I requested a handicapped parking permit to park on campus. It took over a year to process my request.

To get the above parking permit I had to go to the parking permit office. The wheelchair lift was filled with office supplies and trash. The lift was also blocked by a large plant that had not been moved in quite some time.

Again, at Syracuse University I tried to attend a lecture by a guest speaker. The large auditorium was "minimally accessible". The wheelchair lift to access the only accessible seating area was filthy. Handicapped seating was filled with office supplies and trash. Unwilling to sit in filth, my colleagues smiled and waved to me as they walked into the auditorium.

I was invited to attend an academic conference on disability and the health care system at Hobart and William Smith Colleges. The entrance to the conference was not accessible. Organizers and participants posted a picture of themselves standing on the steps. Link: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html

At an unnamed university where I was teaching I walked across campus with a colleague who bitterly complained that the campus was "over-run with students who had a learning disability". This colleague bitterly noted he was forced to give these students extra time on exams. The person felt this was an unfair advantage and told me not everyone was college material. When I pointed out elevators and ramps were expensive modifications the person told me "that is completely different".

At Purchase College I was assigned to teach in a non-accessible classroom. When I called to move the class I was told it was not possible. Apparently it was "impossible to meet the preferences of every professor on campus".  The not so subtle message was my request was entirely unreasonable.

I gave an early evening talk at Cornell Medical School. When my colleagues and I tried to leave all the accessible bathrooms and exits were locked.

Academic meetings are grossly inaccessible. Podiums are designed for a speaker who stand and stages have steps.  I have had dozens of talks delayed or canceled outright. Any time I give a talk I am forced to exchange dozens of emails to be sure the podium is accessible.

I have been invited to dinner dozens of times by colleagues at inaccessible restaurants and venues. Plans are not altered and I am not included.

I gave an informal talk about ableism in health-care settings at a prestigious bioethics center. The founder of the center commented that "it was so nice I could make a career out of being disabled".

The short list above merely notes a few inclusion failures. My point here is not to bash my colleagues. I have had many wonderful experiences and some people have bent over backward to insure my participation. Yet, no one asks the all important why. Why does it take maximum effort to get the most basic accommodations nearly 30 years after it was legally required? Why is it that administrators bitterly complain about the cost of inclusion and routinely refuse to hire ASL interpreters and provide CART? Why after 25 years of teaching am I always the sole wheelchair using professor on campus? Where are my disabled colleagues? Why is online material so difficult if not impossible to access for blind people? Why did Syracuse purchase Orange Success software knowing it was not possible to access if you were blind?

I do not like to upset people. I wish I did not have to fight a battle every time I try to attend an academic meeting or teach on campus. But battle I do. And yes I upset a lot of people.  In fact, it seems to me the only way to make change is to upset others. I truly hate to acknowledge that the Syracuse campus is a toxic and unwelcoming environment for students and faculty members with a disability. I had great times at Syracuse University--the highlight by far giving a talk at "Cripping the Comic Con" in 2014 in full zombie make up. It was a moment I will forever cherish. I have routinely had positive experiences at the Hastings Center whose researchers have treated me with the utmost respect. Joseph Finns, former president of the ASBH, has gone out of his way to help and support me.  Indeed, many former and current colleagues have enhanced my life. Yet none of this has made my life in academia easy. It has been a long hard road. I have paid a heavy price for my career choices. I remain poorly paid and largely unwelcome. This is a hard truth many of my non-disabled peers refuse to acknowledge. Like Kuusisto I refuse to be quiet.  If people are uncomfortable with this I am sorry but I will not be silent. Silence leads to isolation and exclusion. I will not let that happen. Like I already said, I will not give the ableist bigots the satisfaction of giving up.

Thursday, April 26, 2018

Arrests: Past and Present

I have never been arrested. I have avoided arrest for my own physical safety and a more personal reason--any arrest would have deeply upset my parents. My desire not to get arrested however does not mean I was unwilling to push the envelope. Immediately after I was paralyzed in 1978 I got a crash course on stigma before I read the work of Erving Goffman. I was miserable those first few years of paralysis. I was not miserable because I was paralyzed, I was upset with my social fall from grace. I went from being the heroic sick kid to medically stable paralyzed man trying to navigate a hostile world. No more would I be able to attend a concert, sporting event, or any large public gathering without calling a special number and be relegated to the worst seat money could buy (that is if I could even enter a venue).

I did not react well to being stigmatized. I pushed back and did so with vigor. This won me no friends. Indeed, I was failed miserably at being the subservient cripple I was expected to be. The notion of disability rights did not exist and I was thought to have "a cripples disposition". The result was I got kicked out of more than a few baseball stadiums, hockey rinks, and concert halls because I let organizers and ushers know handicapped seating was unacceptable. This has been on my mind because I am not sure much has changed. Prejudice and social isolation people with a disability experience today is different. I tried to do the ordinary on gorgeous Sunday afternoon here in Denver--go to a baseball game at Coors Field (the stadium is accessible). I looked for tickets online at StubHub and the Coors Field box office. StubHub had about 3,000 tickets available the morning of the game. When I put the filter "handicapped seating" on the search engine tickets available went from 3,000 to zero. The same thing happened at the Coors Field website. About 2,500 hundred seats were for sale. When I applied Coors Field "semi-ambulatory" filter no seats were for sale. Simply put, there are softer means of exclusion that are quite effective these days.

Another reason I have not been arrested is because in the 1970s it was simply unacceptable to arrest a person using a wheelchair. The visual of police officers arresting a wheelchair user was not something the general public was prepared to accept. I know this to be true because I was almost arrested at Yankee Stadium in the fall of 1978. I was a college student and had attended a few Yankee games. The Yankees made the World Series and my father got me tickets to the series. When I showed up to the stadium the lousy area that had once been designated "handicapped seating" was filled with television cameras. There was no handicapped seating and the usher suggested I either leave or watch the game from a stadium bar. The cameras I was told were not going anywhere. In anger I went over to one of the expensive television cameras and tipped the tripod over. The camera smashed and broke. I was immediately surrounded by angry television people and ushers who called the police. The police showed up in seconds. I was put in handcuffs and the police escorted me out of the stadium. Two weary New York City police officers were not impressed. As soon as we got out of the stadium one cop said "What the fuck am I supposed to do with you? The precinct is not accessible. I am not going to take you to Rickers Island. If I bring you in I will never hear the end of it." With that short profane soliloquy he took off the handcuffs and told me "Get the fuck out of here. But if you come back I swear to God I will figure out how to arrest you". I took this officers advice. I vowed to never return to Yankee Stadium and always root against the team.

Much has changed since 1978. The police have no qualms about arresting people that use wheelchairs. Indeed, wheelchair dumping is not uncommon. Link: https://www.sfwar.org/pdf/SurvWDisab/SD_CPunch_2_08.pdf  The visuals of arresting people that use a wheelchair remains socially and symbolically significant. To this day, our penal system is ill-equipped to provide the most basic reasonable accommodations to people with physical disabilities that get arrested. Remarkably, people with a disability had to fight for the right to be arrested. This seems strange at first glance. However, John Holland (an important Denver based disability rights lawyer), pointed out after the first Gang of 19 protests that it is impossible to have a civil rights movement if you cannot get arrested. Let me explain how this came about. Only July 5 and 6th 1978 the Gang of 19 brought traffic to a standstill in Denver when they surrounded two RTD buses at the intersection of Colfax and Broadway. This intersection is the epi-center of bus traffic in the city. The protest did not appear out of nowhere. A good history of this event and the inception of ADAPT was done by Rachel Maddow last year. Link: https://www.msnbc.com/rachel-maddow/watch/gop-threat-to-medicaid-threatens-liberty-of-millions-of-americans-974159427845?playlist=associated

RTD had been negotiating with the Atlantis community for more than a year about expanding accessible bus service. In 1978 RTD Denver purchased 254 buses--none were equipped with wheelchair lifts. RTD had just 12 buses with wheelchair lifts to transport an estimated 6,000 residents who used wheelchairs. The July 1978 protests were unlike any past disability rights actions. Imagine the scene: 75 to 80 wheelchair users surrounded two RTD buses during the morning rush hour and brought traffic to a standstill. Police and RTD officials had no idea what to do. The idea of arresting a person using a wheelchair was unimaginable. The police did not want to be the fall guys as the optics were terrible. On the second day the police had to do something. Some proposed deputizing ambulance or EMS employees and taking protesters to the local hospital. One thing was clear though: no person using a wheelchair would be arrested. Instead, attendants working with the protesters would be arrested. John Holland took the city to court and argued arresting the attendants and not the protesters was an equal protection violation. Holland brought the Gang of 19 and all protesters to the court in what must have been quite the scene. Holland argued the police conspired to arrest able-bodied attendants. This, he argued, violates the constitution because they are selectively enforcing criminal law. All charges against those arrested were dismissed. While municipal violations are not typically important the dismissed charges were significant. People with a disability proved they could and would be arrested.

Today, the police are very good at arresting people that use wheelchairs. In 2017 the police got plenty of practice arresting people with a disability who staged protests against GOP cuts to Medicaid.  Like 1978, the visuals of a person being dragged from their wheelchair, carried out of buildings, or with handcuffs on remain visually striking.












Each time I see these photographs I shudder. I shudder because long hours of fruitless negotiating took place well before arrests were made. Ableism can be a brick wall and in response groups like ADAPT play hardball. Confrontational disability advocacy brokers no deals. There are no grey areas or compromise. I get this at my very core. For much of my life nondisabled others have repeatedly told me they have my best interests in mind.  When I hear this line I know I am screwed. Equal access need not involve a longwinded story. The answer is black and white--when asking about access the answer is a simple yes or no. We people with a disability are not in any way shape or form special. Our so-called "special needs" are not special at all. We people with a disability want to do the ordinary. This is why I chuckle every time I come across a Denver Public Library exhibit about the origins of the disability rights movement. ADAPT had a wonderful bumper sticker as part of it "We Will Ride" campaign.

 

Wednesday, April 25, 2018

More on the Syracuse Scandal

I have continually noted that ableism is part of the social fabric of society. Ableism surrounds us on a daily basis and it is impossible to escape its tentacles. People unfamiliar with disability don't get it. Few people are even familiar with the word ableism. Fewer still could define what ableism means. The social ramifications are profound and deadly. Disability based prejudice exists and is not examined. Disability based oppression goes unchecked. Life for people such myself, a wheelchair user, is needlessly difficult. The ordinary is impossible. The psychic toll this takes is immense. Every day is a battle. Battles can be large and small. Nothing is ever easy because disability rights is always subsumed by media representations of disability that are antiquated and dehumanizing. Stories of overcoming disability and cure narratives are rampant. Stories about disability rights are absent in the media and not taught in secondary schools and universities. When I teach about disability history and disability based oppression students are often shocked and ask me "why have I never heard about this?" The answer is simple and depressing--no one cares--that is until disability enters one's life.

The situation at Syracuse deeply saddens me. An ugly incident was bound to happen. I could feel it coming. I never could have predicted the form it has taken but the undercurrent of anger and hostility was readily apparent. The administration I am sure is shocked by what took place. To me, this highlights the ablesism on Syracuse campus and well beyond. Academia is hostile to the presence of disabled students and particularly faculty members with a disability. If you doubt me please read the ground-breaking book Academic Ableism.

Pre ADA cripples such as myself who came of age before the law was on our side are familiar with hatred. I have been spit on for having the nerve to get on an MTA bus in New York City. I have been refused service in restaurants (no wheelchairs). I have been denied boarding on airplanes because I was deemed a flight safety risk. I have been mocked on the streets. I have been denied health insurance. Strangers have suggested I should just die. A physician once offered me assisted suicide. The list of civil rights violations I have been subjected to is lengthy.

Ableism and hatred go hand in hand. The Theta Tau videos amply illustrate the hatred we people with a disability encounter on a daily basis. Today Stephen Kuusisto wrote:

Now I’m an old hand at hate. Disabled, bullied in childhood, discriminated against in education and employment, I’ve lived a long time in hate-ville. Here’s the thing: able bodied white people don’t understand that if you’re from a historically marginalized background you have to put yourself together anew every day. I don’t mean putting on your makeup or shaving. I mean a full scale, internal, hot to the touch assembly of hope, aspiration, belief in the future, and a reserve of irony—you’ll meet people who don’t get you all day long and you’ll manage them with humor, forceful insistence, passion, and compensatory self-regard. Able-bodied white people don’t need to do any of this. The worst thing they can imagine is a bad day in junior high.  Link: https://stephenkuusisto.com/2018/04/25/hate-at-the-university/

The life of people with a disability is unimaginable to your ordinary able-bodied white person. They often shudder as we cripples go by. Some are openly hostile. Others only express their views behind closed doors when we cripples are not present. What is one to do? I for one maintain this blog (it is a labor of love). I teach. I write. I research. I advocate. All this feels inadequate. I struggle with the sense of helplessness to make significant social change as I do not want any person to experience what I have had to endure.

What can be done at Syracuse? I urge readers to take 15 minutes and listen to what Diane Wiener has to say about the crisis and scandal at Syracuse University. She is more optimistic than I am and gives me hope Syracuse University can indeed transform into an inclusive campus--a campus where even I might be welcomed.



 




Tuesday, April 24, 2018

Syracuse University Scandal

In the last week multiple people have asked me to comment about the scandal at Syracuse University.   I have refrained from writing about the shocking videos released by Syracuse University Daily Orange--the student newspaper. For those unfamiliar with what has happened, two videos of the engineering fraternity Theta Tau were exposed that depict intersectional bigotry.  The crass and offensive behavior in the first video did not surprise me. The homophobia, racism and dehumanizing behavior depicted behind closed doors is indicative of the unwelcoming social environment on campus. During my three year tenure at Syracuse University I was made to feel deeply uncomfortable (any reasonable accommodations requested were met with stiff resistance and extended delays). When I left the university I simply I could not tolerate the hostility directed to people with a disability and other minority groups on campus. The social and intellectual environment was toxic. 

The first video exposed was without question horrific. However it was the second video that has prompted me to write because it was far worse than the first. I refuse to embed the video in this post. It is too upsetting and vile. Since its release I have had nightmares every night and do not want to risk hurting others. However, I will provide a link to a Washington Post news report on You Tube. Be forewarned, the video is triggering and displays hatred under the guise of "humor" and I can only presume a "boys will be boys" attitude. Link: https://www.youtube.com/watch?v=Zdj16cqOxdg    

To date, the university is doing it's best to handle this crisis. I have no doubt a crisis team has been formed and Chancellor Syverud has tried to address the repercussions and the national press it has garnered. Nothing Syverud has publicly stated has impressed me. I am not sure anything the man says or does can help the situation. I have followed this story as closely as possible and only two people have offered true insight--Diane Wiener (Director of the Disability Cultural Center) and Stephen Kuusisto (professor and poet). In response to the scandal, Wiener eloquently wrote: 

At Syracuse University, and in the City of Syracuse, we have a proud and long history of disability rights being at the heart of political work. In what is an anathema to all that disability activists have striven for at Syracuse and elsewhere, Theta Tau’s video is not only a representation that demeans, dehumanizes and objectifies disabled people, it does so by utilizing toxic masculinity, homophobia, racism and other forms of systemic oppression and violence to accomplish its strategy, hiding behind the false narrative of “humor,” and “boys will be boys.”
Disabled people are not to be pitied; disability is not a devastation that needs to be cured and about which triumph and shame are the necessary or desired aims and outcomes. Yes, some individuals are ashamed of their disabilities, and others would just rather live differently. Some people do not want to be known as disabled, or might prefer only to be called Joe, who happens to have a disability, but disability is not the entirety, let alone the center of Joe’s life. There is no monolithic disability perspective or experience. Some would assert that shame and stigma around disability reflect internalized oppression, highly understandable in a world that was and remains often not built or shaped for us, the same world that has often feared, ignored, dismissed and even, in some cases, killed us.
Disability identity is comprised of a nuanced and variegated set of realities, existing always within and enhancing the workplace, interpersonal relationships, scientific discovery, arts and culture and, of course, the university, among other spaces and landscapes, geographic, political, social, virtual.
Rape culture and locker room talk will never be tolerated at Syracuse University. Ableism and other forms of interlaced oppressions must be denounced and undermined.
We have a lot of collaborative work to do. And, we will continue the labor.
I am not sure how effective Wiener's words will be. The labor as she puts it to me is overwhelming and depressing nearly thirty years post ADA. Yet, the sort of hatred spewed by members of Theta Tau's are something people with a disability deal with on a daily basis. I know this to be true because  Syracuse students sought me out on a regular basis. They told me of university wide failures to provide the most basic accommodations. Stories of harassment abounded. I too was harassed on campus and on the streets of Syracuse. When I walked to the bus stop my last year in the city it was not uncommon to be called a "retard" by strangers and mocked.

Who is to blame for the scandal? Not the many fine people I know who still work at Syracuse University.  Today Stephen Kuusisto wrote that the Theta Tau videos were a "wake up call". Here Kuusisto is being polite in the extreme.

This morning walking my guide dog I thought “maybe a more representative motto for the university should be “Buildings Over People” as opposed to our current motto “knowledge crowns those who seek her”?” We’re great at putting up buildings that show us in the best light. We have “Ernie Davis Hall” but guess what? Ernie Davis’s developmentally disabled son was rejected from SU. We have a multi-million dollar Institute for Veterans and Military Families going up on the site of the former Disability Studies Program’s building. We dispersed the disability faculty across campus without a place to meet. Meanwhile veteran-students have related to me their disappointment at SU, remarking that the campus is an unwelcoming place. This is what I think is most central to our dilemma and which only the Board of Trustees can address: SU is not and I repeat “not” a welcoming institution for veterans, the disabled, people of color, LGBTQ students and staff, foreign students, women, it’s a long list. Link: https://stephenkuusisto.com/2018/04/24/syracuse-university-is-in-a-jam/

The list is indeed long and I would add depressing. Syracuse is a grim decaying city in the grips of poverty and despair. As the city crumbles, Syracuse University builds beautiful building for beautiful people. Cripples need not apply. People of color need not apply. LGBTQ students need not apply. Any person who is in some way different is not welcome and their presence will begrudgingly be tolerated publicly. But behind closed doors at a university that severely struggles with transparency
a radically different narrative emerges. That narrative is dark and ugly. We caught a glimpse of it in the Theta Tau videos. Back to Kuusisto:

Buildings over people is the proper latinate maxim for us. I believe the Trustees bear more than a little responsibility for this situation. So keen are they to cut budgets and put the university on a strict business model management system they’ve forgotten that the buildings don’t mean a thing if the people feel disparaged, maligned, under served, ignored, and of little value.
I’m a disability rights activist among other things and I’ve been asked by students and faculty to weigh in on what’s going on here and I’m trying hard to be measured. Syracuse is a good university with lots of great people. We must reaffirm what’s good here and resist what’s deleterious about our community. We need to do this with brave leadership and a true commitment to change. Buildings and heated sidewalks and underfunded resources in community services and academic programs won’t cut it.
I agree with Kuusisto--Syracuse is a first class educational institution. Many fine people work hard to make the campus a welcoming environment. When I think of Syracuse University I think of people like Diane Wiener, Stephen Kuusisto, Michael Schwartz and others who tirelessly champion the rights of marginalized people. But I also bemoan the way universities are now run. A university is not a for profit enterprise and should not be operated like a business where the bottom line reigns supreme. People like Bruce Harreld have no place running the University of Iowa. Many such businessmen run universities these days much to our detriment. So like Kuusisto, I think the Board of Trustees and the Chancellor bear a great deal of responsibility here. The Theta Tau videos did not emerge from a social vacuum. Campus wide hostility toward marginalized people is a real problem and all the lovely photographs of campus are not going to change that fact. Leadership is required and it is past time for faculty to assert themselves. They are, after all, the people charged with educating the members of Theta Tau. Who knows, perhaps one of the men in the fraternity was in my classroom--a thought that makes me shudder.  

Tuesday, April 17, 2018

Road Races: The Bad Old Days

I continue to go through Denver Public library archives about the disability rights movement in Colorado and beyond. It strikes me as shocking how recently blatant disability based discrimination was accepted as the norm. I lived a good bit of this history and experienced significant discrimination as a young man. I recall being turned away from multiple airlines because I was deemed a "flight safety risk". I was spit on when I tried to get on New York City MTA buses when lifts were being introduced in the early 1980s. I had cab drivers in New York City refuse to stop for me on a regular basis. I have encountered inaccessible elevators to subway systems nationwide. I was once taken out of Yankee Stadium in handcuffs by the police who had no idea how to arrest me in 1978.

Pardon me if I do not wax nostalgic about the olden days. The olden days were ripe with disability based discrimination. Lives, careers and dreams were shattered on a regular basis. I came of age before ADAPT and well before legislation existed to empower people with a disability.  I was continually barred from participating and attending many public events in New York City where I came of age in my 20s. Concerts at Lincoln Center or sporting events at Madison Square Garden were grossly inaccessible. At old Shea Stadium handicapped seating was behind a chain link fence next to barely functional toilets that stunk of urine. Using a wheelchair guaranteed the worst seat at all venues--disability was ghettoized. This was not a New York City problem--the presence of people with a disability was an affront. By the late 1970s and early 1980s we anonymous people with a disability had reached a saturation point. Countless people had enough and pushed back. I was among those that pushed back. I had it easy--I was among the 1% and privileged. Sure I encountered disability based discrimination on a regular basis but I was not fighting to get out of a nursing home. I was fighting for the right to privileged activities--going to college, graduate school, and, for a while in my early 20s, to participate in road races. I was interested in marathons. Racing wheelchairs were about to be developed. The wheelchair industry was about to radically change and adaptive sports was in its infancy. I was an early pioneer in wheelchair racing but I was truly a peripheral figure. I was an ordinary young man who simply wanted to stay in shape and see how fast I could cover some serious miles. I was not a serious athlete nor was I designing adaptive sports equipment. I wanted to be a scholar and remain in good shape. To this end, I tried to enter New York City Road Runner events. Here I hit a veritable brick wall. The founder of the New York City marathon, Fred Lebow, hated the idea of wheelchair participants. For years the NYC Road Runners club fought tooth and nail to exclude wheelchair racers. Lebow, at a notorious closed door meeting, supposedly said with ferocity that he would not allow the marathon to be turned into a "freak show".  Unlike other major marathons that quickly incorporated wheelchair racers, Lebow and the NYC Road Runners Club did their level best to make the NYC marathon inaccessible to all people with a disability. Wheelchair racers were deemed a significant risk to themselves and others (a common place charge at the time). Marty Ball was among the first serious marathoners to push back. He registered to participate in the NYC marathon under an assumed name. For more on Ball see: http://www.wheel-life.org/marty-ball-lifelong-warrior-for-better-wheelchairs-wheelchair-sports/

I have written about the long sordid history of the NYC marathon elsewhere. See: http://www.raggededgemagazine.com/focus/26miles.html Suffice it to say, it took decades for the New York City to be inclusive to elite and ordinary wheelchair racers. Much work remains to be done to this day as wheelchair athletes have continually encountered problems in NYC and other large events. As I now live in adaptive sports mecca of Denver and nearby Colorado Springs I naively thought Western states would have been far more inclusive. I was wrong. Last week I came across a story about the first Bolder Boulder Run. The first Bolder Boulder run was held in 1979. Since its inception the Bolder Boulder run has grown exponentially. It is now the premier 10k run in the nation. It is also one of the largest running events in the world (it is the 3rd largest running race in the USA and 7th largest in the world). In 1979 however just 2,700 people participated. By 1990, when the first pro wheelchair race was introduced, over 26,000 people participated. A few years ago over 50,000 participated. See: https://bb10k.bolderboulder.com/about-bb10k/bb-history/ Note the year 1990--the first pro wheelchair race was introduced. Yes, it took nearly two decades for wheelchair athletes to be recognized. Like the NYC marathon, I suspect the main reason it took so long was because of the Bolder Boulder race organizer. Like Fred Lebow, Steve Bosely was adamantly against the inclusion of wheelchair athletes. After the inaugural race I read a story about Bosely: "Bolder Boulder Not So Bold When it Comes to Wheelchair Racers". Marty Ball participated and he along with many other wheelchair racers complained about multiple needless obstacles during the race. After the race, officials were angry and publicly vowed to exclude wheelchair racers from the race the following year. Among those officials opposed to the participation of any wheelchair racer was Bosley. While Bosely "sympathized with the plight of wheelchair racers" for unspecified logistical reasons he firmly believed they represented a risk to themselves and others. Bosley noted accidents had taken place involving wheelchair racers and they had the obligation to avoid future accidents. He petulantly noted "Our staff has discussed the wheelchair issue probably more than any single issue in the last seven or eight years and we've pretty much come to the conclusion that what we're putting on is a foot race and wheelchairs have no place".  Bosley went on to state:

First, a wheelchair racer who completes the course in 32 minutes and a runner who completes a race in 32 minutes are two completely different things. A wheelchair racer goes extremely fast--up to 35MPH on downhills--and very slow on the uphills. So a runner and a wheelchair racer who start at the same time will constantly be conflicting with each others paths during the race. Second, some of the slower wheelchair racers take more than three hours to complete the course. This causes us problems because we're on a very tight schedule.

This is the exact logic Fred Lebow used in NYC to effectively bar wheelchair athletes from participating. Toward the end of his life, Lebow changed his mind about the inclusion of wheelchair racers. I have no idea if Bosely had a similar such change of heart. Regardless, Bosely spent much of his life expanding and advocating for the Bolder Boulder race. As of 2017, Bosely was on the Board of Regents at the University of Colorado and member of the Runner USA Hall of Fame. Clearly, his opposition to the inclusion of wheelchair racers in 1979 did not hurt his reputation nor impede the Bolder Boulder 10k race from becoming a premier event.

While I no longer have an interest in participating in marathons or running events, discrimination at road races continues. The Paralympics continue to operate in a media vacuum and receive virtually no press. Worse, the X Games that once highly touted adaptive sports has discontinued Mono Skier  X events that was quite popular. The few stories that appear in press about adaptive athletes are uniformly terrible. These serious athletes are reduced to feel good stories about "overcoming disability". Few if any Paralympians are household names. Perhaps the best know Paralympian, Tatyana McFadden, refused to participate in the Red Bull's Wings for Life Run in 2015. McFadden wrote:

New rules within the Red Bull Wings of Life event stipulated that I couldn’t race in my racing chair and would be, instead, required to race in an everyday wheelchair and accompanied by a “support person.” I was both bewildered and upset. I felt it would be like asking other runners to run in flip flops.
The goal of Red Bull’s Wings of Life program is, admirably, to find a cure for spinal cord injuries. Their efforts should be applauded and encouraged. More companies need to step up to the plate, like them, and become socially responsible.
However, this change is inadvertently reinforcing the idea that those of us with existing spinal cord injuries are somehow less than whole persons. My injury is permanent. It has resulted in atrophied legs that I will never be able to walk on. That is the reality of how my body works. I accept this. But it does not define who I am. In the course of my life, I have discovered my own talents and abilities within the body that I have been given. I dislike the term disability, it infers I do not have ability or my abilities are somehow less than that of others. On the contrary, I have abilities others don’t.
In addition, by creating one rule for all disabled people Red Bull is perpetuating a stereotype that people with disabilities are all the same and all need assistance — and, by themselves, are not capable of doing something like racing. Instead it should be a person’s right on how they choose to race, be it with a guide runner, prosthetic leg, everyday wheelchair or a racing wheelchair. http://tatyanamcfadden.com/redbull/

Last year I had a similar the same experience. I wanted to participate in a handcycle race and a few days before the event was informed via email that any person with a disability participating using a hand cycle had to be accompanied by a support person. Here we are nearly 30 years post ADA and the infantilization of people with a disability remains firmly entrenched. Imagine if a woman was told she could not participate in a running race without a support person. Outrage would ensue. This is why I remain furious and frustrated that ableism stubbornly clings to disability. We people with a disability remain the other--always on the outside looking in--liminal in more ways than I can articulate. I for one have had it. Enough is enough.