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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: 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:

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:
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: 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.