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.

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.

 

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.

 

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.