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Thursday, August 7, 2014

Disability: A Cure for Developing a Big Ego

I am a bit more settled in. I can get to the grocery store without the GPS directing me. I know great places for Kate and I to walk. I am figuring out bike paths. Why I even found a great hot dog lady in a nearby town. More importantly I am putting the finishing touches on my classes. I am eager to teach my graduate class in bioethics and disability.  I look forward to getting back to the honors department this semester. In short, a new routine is being established. I was feeling pretty good about life until yesterday. At a local strip mall in Syracuse I was doing some shopping. I made several trips in and out of various stores. Shoot, I even found a spot in handicapped parking. My head is swimming and I am following a long list to the letter. On one of my forays I noted a group from what I assumed was the local group had parked near the entrance to Wegmans (a great supermarket chain). There were about 8-10 adults with a dizzy array of visible disabilities outside the store entrance. I was pleased to see this group out and about. No doubt the logistics involved in such a trip are daunting. I was not really paying much attention to them. I was far more concerned with not getting hit by a car in the parking lot. I head in the direction of Wegmans where the residents of the group home were gathered in a small huddle. Suddenly I feel a person grab the back of my wheelchair with authority and yank my wheelchair in the direction of the group home residents. This is not easy to do as I have no handles on my wheelchair so people do not do what this person has done. At the same time I am scolded "How dare you leave the group. You could be hurt. You know better. I am taking you back to the others and do not move". The tone of this woman's voice is nasty--think drill sergeant like. She has what she thinks is a command presence. This might work in the military and in Catholic school but not among the public. As we are traveling to the right I take my fore arm and with significant force bash my forearm against her arm. She instantly let go of the wheelchair and I spun around obviously angry. She was shocked but not hurt (I could never harm another human being). A very unpleasant though brief conversation ensued. She was not impressed with me. I was deemed rude and nasty. She told me she made an honest mistake. I was deemed over sensitive if not hysterical. The tone of her voice remained dominant as did her body language. Her apology was not sincere. She was deeply annoyed with me. I was essentially an  uppity cripple. How dare I assert myself. How dare I assert the fact I am an autonomous being. How dare I be human!

The above incident was unusual. It took place in Syracuse where there appears to be a small but notable number of people with a disability. Syracuse University is also well known for its championship of disability rights. I remain upset about what took place. It was not the rude behavior of the woman in question. It was not the assumption she made that all people live or are part of a group home. All of these are objectionable. What bothered me was the extreme authority she freely wielded. If she treated me in this manner how did she treat the residents of the group home? Not well I assume.  This is not acceptable and it kept me up much of the night. Exactly why do people with a disability routinely get treated like shit? Why do the hordes of bipedal people assume my life and the lives of all people with a disability lack value? Worse why is such a discriminatory person working in a group home? Yes, I had good reason to toss and turn last night.

Tuesday, August 5, 2014

I am Distressed

My beloved lab kate is nervous and distressed. She knows major changes are afoot. Boxes abound and furniture and rugs disappear by the day.  While I am not distressed by my move I am nonetheless feeling distressed today for two good reasons. First I read Steve Kuusisto post at Planet of the Blind. As Heather Kirn Lanier noted the post is so good it hurts to read. I would concur with this assessment and would add in a healthy dose of searing.  Here is what Kuusisto wrote today in full: 

I am distressed. Blindness isn’t merely a lack of vision–its a fight or flee carnival, sequential, unpredictable, sometimes rather frightening. And even the small things, paying cash in the market, become tangled as my cash falls to the floor and I fumble publicly down where all the shoes have trod, the impatient shoppers behind me, no one offering to help, and my skin undergoes electrolysis and groping I feel I could weep. I know I’m not supposed to say this. The core of speech is reserved for nuanced politics. One is supposed to say disability is merely a nuisance. That’s the politically correct thing. I’m just like everyone else but with a few added musical notes. But this is of course ridiculous when you’re down on the public floor scrambling after two dropped quarters. I escape with my groceries. Walk in the sunshine. “The day will get better,” I say to no one in particular.
But its fight or flee–all day; a fairground of anxieties. Crossing streets. Getting to the other side safely. Getting there with your dignity. The dog helps. Squaring your shoulders helps. But then the next place you go has a revolving door. You can’t get in. When you tell the management they need a “disability friendly” door they tell you with their Rococo eye rolling, they don’t care. “Go away,” they say, though they don’t really say it; but they do. You continue on the street of public life. You shamble among the rags and masks of the ordinary people. Everyone looks at you. You’re a half vagrant out in public blind person. You’re wearing your good suit with the purple tie. You’re walking around with rain in your heart.
 Strangers ask how much you can see. You make jokes. “You look like Ingrid Bergman; Cary Grant.” Young people don’t know who they are. It doesn’t matter.
The books I downloaded this morning from Amazon aren’t accessible. I wasted my money.
After many languages I’m still an orphan.
I live in an American city without good public transportation. I must rely on taxicabs more than I wish. The drivers are desperate people. They talk about desperate matters with broken words. Most of them listen to “hate radio” and I smile from the back seat under my big sunglasses.
Do you see? What do you see? I’m waiting for happiness to slowly crawl in…
To borrow Kuusisto's words it is hard "waiting for happiness to slowly crawl in" to the hearts of so many people with a disability. I started my day wondering is happiness even possible? I loved the poetic idea of rain in one's heart. A water laden heart is heavy and tired. I so get what Kuusisto is eloquently writing about. Nothing is easy for people with a disability.  The grocery store is always an adventure. Anonymity impossible. Why just today I was lauded for my "inspiring" ability to carry two plastic bags to my car. Mass transportation is always an adventure. Flying on a plane is an invitation for abuse. Accessible housing is like looking for a needle in a hay stack. The worst part of all this is that we people with a disability are expected to put a smile on our face and make those violating our civil rights feel okay. In individualizing the "problem", namely my very existence,  negates the inherent civil rights violation against a class of people. And yes people with a disability are indeed a class apart. Read the ADA--it is not about buildings and construction codes but rather civil rights legislation. I doubt less than 1% of the nation realizes this and I bet most people with no disability experience  would think equating the ADA with civil rights legislation is political correctness run amuck.
While I was distressed by Kuusisto's words, I kept thinking why. Why almost 25 years post ADA does the law not resonate? Why are people with a disability not in positions to make effective social change? Why is disability rights not taught at every school in America? I then read another blog, The Feminist Wire and a light bulb went of in my head. In "On Feeling Depleted: Naming, Confronting, and Surviving Oppression in the Academy". Here is the second reason i am distressed: this post gives a perfect discussion of why people with a disability are not scholars. Link: Believe me, scholars with a disability are a rare species. I would suggest we are an endangered species. The proverbial Ivory Tower social environment does not want us to exist. We are a burden and costly one at that. We are not wanted as professors or as students. We do not learn in the prescribed typical manner. We need reasonable accommodations--in other words we make people think about difference. The people in positions of power that usually make the designs about what is or is not reasonable know nothing about disability. And my God the time it takes to make reasonable accommodations moves at a glacial pace. That means up and coming scholars with a disability progress at a glacial pace. Most give up--a reasonable response when confronted with bigotry. 
In the post at The Feminist Wire the authors compare Stuart, a well prepared doctoral student from a privileged background with a typical no disabled body with a student with a disability who is also a doctoral student.  I quote:
The academy wasn’t just built by people who look like Stuart. It was built with his body in mind. Stuart doesn’t have to worry about how he will get in/to his classrooms. He just shows up, opens the door, and walks right in. Stuart doesn’t have to make endless calls to Disability Services, Parking Services, Dean’s Offices, and the like, just to secure a disabled parking permit to be near his classroom. He doesn’t have to think about getting up that hill. About the potential un-shoveled sidewalks and streets. About the ice and slush that jam in a wheelchair’s tires.
Stuart isn’t watched or marked. He doesn’t have to hear the whispers about his use of the “Handicap” button to open doors. Doors that are too heavy for this body. He doesn’t have to carry a cooler of food and medicine to class and with him at all times to regulate his blood sugar. He doesn’t have to spend days making special food so that he’ll have enough for the school week. For class, for unexpected meetings on campus. He can spend time reading Marx for fun because his body doesn’t require the amount of work or time that this body does.
People like Stuart can glide through academia not thinking about the ways the buildings they use, the classrooms they occupy, and the events they attend exclude certain bodies. Stuart’s body doesn’t just not experience battle fatigue because of dis/ability, or race, or class, or sex, or gender; Stuart’s body doesn’t get physically fatigued. Because for him a door is not an obstacle. Finding a gender-neutral and accessible bathroom is not an obstacle. Getting to campus is not an obstacle. Leaving the house is not an obstacle. Using a computer is not an obstacle. People like Stuart are not tired of fighting because they don’t have to fight for their bodies to exist in the spaces of academia.

This is what no one that is not forced to deal with a disability wants to think about or acknowledge. Disability is a needless time sucker. Reasonable accommodates are always a hassle. Parking permits, bathrooms, accessible classrooms and the list goes on. These obstacles reveal my body is not wanted. If we desired to make the academy accessible I would not be forced to make dozens of phone calls and fight tooth and nail for an accessible bathroom on the floor I am teaching on. The above post perfectly describes the typical problems people with a disability encounter. It take an unusual person to push back and scholars are not known for pushing back. Hence most aspiring scholars give up. I get this. I almost gave up myself. I did not give up because I had parents and an established scholar like Robert Murphy at Columbia to support me. As a graduate student Murphy told me when you have a problem call me and I will call the provost. Problems got solved instantly. Not many are this fortunate. In fact I will speculate virtually no aspiring scholars today have this sort of support.  
There is a reason why there are precious few scholars exist. No one to my knowledge is addressing this problem. Hence each year I end my class with a question: Have the students ever had a paralyzed professor before? In twenty years not a single student has answered yes. The point is there is no desire to develop and foster aspiring scholars with a disability. The animosity directed to students with a disability is getting worse not better in the last 25 years. Reasonable accommodations are seen as costly and unfair to typical students. I have been told this directly by my professorial peers. So yes, I am distressed today.  I am distressed for good reason. I am not however going to give up. There is a reason I embrace the moniker Bad Cripple.