Over the past two decades I have tried hard to advance the rights of scholars who have a disability--any disability. Part of this effort was self centered. I advocate for myself. I have no choice but to do so. The vast majority of academic organizations ignore access and disability issues. I am repeatedly told "sorry but our organization is not responsible for access. Call the hotel, they will have all the information you need". Some organizations belittle scholars with a disability. Last year the AWP rejected all panels proposed that had a disability based focus. This year the AWP belatedly and half heartedly created a disability caucus. This prompted Stephen Kuusisto to write:
The national conference of the Associated Writing Programs or AWP in the year 2016 failed to include any disability literature among its hundreds of literary panels and presentations. Imagine had they failed to include any gay, lesbian, bi-sexual, trans-sexual, queer, gender fluid presentations, or a single panel devoted to writing by people of color or women? The outcry would be considerable, but not so with disability—a matter I consider shocking, not because able bodied people can’t conceive of disablement as a profound and universal element of human life, but because, (and here I shall echo Marcuse) there is no truth in art that does not break the monopoly of established reality). Gay reality is crippled reality; black reality is crippled reality; feminist reality—you get the picture.
So why does the national conference of the creative writing programs in higher education “not” get disability as an artistic seed bed, and perhaps the most inclusive of all marginalized categories, insofar as nearly everyone will have a disability at some point in this life? Why indeed. The answer lies in a paternalistic view of physical difference, a 1970’s model of the disabled as outliers who probably cost lots of money to include at the university; who must have a “special” office to handle their requests for whatever moist and inconvenient things they need. The rest of us able bodied professors fairly shiver at the prospects. These people have breathing tubes, motorized scooters, talk funny, or don’t talk at all. They have colostomy bags and crutches and sometimes they have wigs. They bring “down” the youthful, peppy, yoga-centric, aerobically charged, glossy entitlement of diversity filtered through the optics of good looks and vitality. Why a couple of years ago at their conference in Seattle, they hosted a poet with a disability who said publicly she’s not interested in that identity—would prefer to be understood as a real poet.
You see how it works? Real literature is GQ and Vanity Fair; it’s happy; and we all know those disabled writers can’t be happy—why in fact, disability is so hard, most of us university sponsored, middle class creative writer types imagine if we’re ever going to be disabled, well, by God! we shall commit physician assisted suicide! Do I gild the lily? Am I stuffing the owl? Perhaps. But leaving disability out of the conference, and then, pretending to afford something like awareness by hastily creating a “disability caucus” where the disenfranchised crippled writers can meet, and maybe even express their concerns, well, this is a kind of Uncle Tom business. When I hear separatism I know it for what it is.
Separate. Always separate and special. This goes against the grain of cherished American ideals foremost among them the idea we are all born equal. While one and all know this is not true it is a myth we Americans cherish. Here we are 25 years post ADA and disability rights remains an unpopular notion. The law has utterly failed to resonate with the American public. There is no social demand for access. My little town in Central New York is lovely. Old churches and buildings have been loving restored and impeccably maintained. The town is picture post card perfect. This perfection ends if you use a wheelchair. Most stores on the main drag have a step to enter. I cannot enter most of the shops. A step, one step is preventing me from enjoying my town and giving my business to local shops. The ADA deems something like a single step readily accessible. Almost all the shops in town could easily be made accessible. All the academic conference I attend could easily be made accessible. There is a lack of will and knowledge to do so. You see special is okay provided it is not imposed. Even more important is that access be inexpensive because it is not valued. The ADA failure is not legal but rather social. One example will suffice. Ten years ago the Subway shop in my town was sued because a step prevented wheelchair access. The case progressed at a glacial pace. About a year ago a settlement was reached. The step in the front would be replaced by a ramp. A ramp that would be welcomed by teens, college students, mother's with baby carriages, bikers, and many others. A ramp, however, might mar the architectural heritage of the town. The unwanted ramp is being imposed on the town by the Federal government and that damn ADA law. So what did Subway do? They made the bathroom accessible and did not ramp the entrance as agreed upon in the settlement with the DOJ. The ramp empowered those that did not want it to undermine the ADA. "The ADA is a joke! The government forced us (insert outraged local shop owner) to make an accessible bathroom in an inaccessible store". Ignored is the fact the Department of Justice required said ramp. A lack of will. A lack of desire. A lack of thought. In example of cultural ignorance. When I complain, when I point out the lack of access or, worse yet, assert my civil rights I am bitter. I am an angry man. Think Ralph Ellison. Think Jim Crow. Advocating for disability rights is a screed. I am the hopeless and wearisome narcissist. Yet it is never about me. It, meaning equal rights and a fully inclusive physical environment, is about the person with a disability coming after me long after I am gone. It is about screen readable software for the blind. It is about ASL for the deaf. It is a quiet room for some within the neurodiveristy community. It is about different means of communication for those who have are not verbal. It is about cutting edge technology for amputees. It is about the inclusion of those with profound physical and cognitive disabilities. It is about the elderly and those that age into disability. It is about those with chronic illness. It is about Ashley X and the bodily integrity of those who cannot advocate on they own behalf. It is about those in a minimally conscious state. It is about the largest disenfranchised group in this nation.
Let me provide an incentive and forewarning. We people with a disability abound. We are a distinct class of people. The law is solidly on our side. While I the poster boy for the universal wheelchair logo a disability may or may not be visible. Be careful. We are among you. And more to the point any human being can become one of us. Cripples are born and some are made by happenstance. Don't trip and break your head. Don't get old. Don't get sick. For if you do, and it will happen eventually if you live long enough, you will become one of my people. For me, there was a decade long decent into disability as a young man. The typical body I had is long gone. For others it can happen in the blink of an eye. I urge those without a disability to be narcissistic. Embrace my screed. Don't do it for me. Do it for yourself. Think of it as insurance. Disability is part of life and human evolution.
Hey William, I've shared this post on the Rooted in Rights Facebook page: https://www.facebook.com/rootedinrights/posts/1009591199129836
ReplyDeleteI saw this on facebook. Thank you.
ReplyDeleteI saw this on facebook. Thank you.
ReplyDeleteSomeone I know called us "an equal opportunity minority."
ReplyDeleteAnd, FWIW, the American Psychological Association does a reasonably good job of accommodating people with disabilities. There's a special room, staffed by a knowledgeable woman who was able to persuade me to accept touring the huge exhibit hall in a wheelchair pushed by student volunteers (my hands are pretty well trashed, and this was in the days before I had my own power chair). It was the first time I'd done the exhibit hall without winding up exhausted & in pain.
I haven't gone to a conference in years, and I'm sure that's noted in my annual review. Just can't get there or get around while there...so disheartening. Everything you write, Dr. Peace, has me nodding and feeling "heard." Thank you.
ReplyDeleteHave you seen this? http://www.adahospitality.org/accessible-meetings-events-conferences-guide
ReplyDeleteI spent some years helping to organize non-academic technical conferences. Pushing to make things more accessible was difficult and a mixed bag. All of the events I worked with were volunteer run. People would promise time or equipment and then disappear. ASL interpreters are expensive and it's hard to find funding for them. The same is true for anything that can read slides to the visually impaired. Accessible podiums/staging is typically near impossible to get or find or arrange for, or if you can they want piles of extra money -- which may even be illegal. Yet I'd be trying to make sure there were maps of accessible routes, that there were enough handicapped spaces available, that kerb cuts weren't blocked, that any motorized doors and accessible bathrooms were all available and functioning, sometimes having to put a proverbial foot down and say, "No, fixing it 'sometime tomorrow' is NOT an option. It *MUST* be fixed by 5 am tomorrow."
One of my more sad/hilarious tales comes from being an attendee (not an organizer) of a semi-academic conference for computer professionals. I was using a powerchair to get around at the event. There was a second conference in the same complex, and it turned out to be for those who worked with the physically disabled. They were mostly using one wing, which was near the only accessible restroom (groan). Every time I came back from the restroom, a hotel worker would try to stop me from going into the area where the computer conference was, insisting I was part of the other conference.
I checked with others at the conference who were using mobility devices, all men. Apparently I was the only one being challenged. The hotel workers apparently couldn't fathom the idea of a woman, let alone a disabled woman, being part of a professional computer conference!