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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.


Unknown said...

This post made me cry. Well written and cuts straight to the heart. Will it make any difference? Probably not. Maybe over time? Who knows. I'm sorry. I'm not sorry for you (not pity). I'm sorry that our society is so screwed up that we care more about the profit line than we do about accessibility for all.

Anonymous said...

I struggle to know what to say. I want to convey sincere regret and puzzlement that this society I live in continues to act like the most selfish of adolescents unable to understand that 'fair' means 'fair to everyone' and not just 'fair to ablebodied/blond/male/middle-class me.'

It's remarkable to me how many people seem to believe that a few blue parking spaces have solved the accessibility problem. But you know all that.

I am distressed.

Glee said...

Yep. We can't let the turkeys get us down.

Unknown said...

Ironic that in the blog post ( I wrote today I quoted from a post you wrote in 2009 about anger and an unaccepting world. Sad that after 24 years of ADA not much has changed. Still you have had a hand in mentoring and influencing other people, many of whom you will never know. You raised a son who understands and who challenges antiquated ideas. That is my idea of success.

Mary Evelyn said...

Disability is a time suck. The distance you must go to find an elevator, the battle for accessible entrances, parking spaces, sidewalks, etc. I'm glad there are people working to make this better for my son someday. Thank you.

Nessie Siler said...


Oh, I hear you... Get this, my local community college put in an elevator recently. Good thing, right?
Well, they left off the automatic button on the front door that would have allowed access for me and others to use said elevator. I'm not making this up.
I was told to call ahead so that someone could be posted at the door to let me in. (Yeah, right, and overtax the busy day of an already overworked janitor? No, thanks...)


william Peace said...

Diane, I hate to say it but I can freely, though not scientifically, state without ranker that 90% of the population does not give a shit about disability rights. I would go further in stating of that 10% that does not care a small percentage of them would prefer if we just died or did not exist.
Second Summit, I too am amazed that people see the blue logo and think all is well in the world. This ignorance I believe is willful. People just do not want to engage in a real nuanced discussion of disability. Part of this is fear but is a legacy of a century of exclusion.
Mary, You can say that again. Disability sucks up time and effort. Nothing is easy. Parking a car. Finding a place to live. Accessing mass transportation. You cannot get through any single day without seeing a flagrant violation of the ADA.
Nessie, Your story is all too typical. At a university I once taught at a new building was erected and the main entrance had a set of double doors. Only once set was automatic. There was plaque instructing anyone with a disability to bang on the door for entry.

Middle Child said...

I haven't been to blogger for a while, but the quality of your writing always humbles me.What you write is exactly how it is and I can't improve on it. So just agree agree. Its funny it took my husband and I a while to adjust but you learn how to look ahead and scope out the footpaths and barriers...spotted a beauty the other day. There is this really long slow hill beside a busy road - (you would never get accross) just over the hill out of sight the local council has put a signpost right in the middle of the footpath - its cemented in - advising of some change or other. So you'd get to the top expecting to finish your journey - hard enough so far, and then over the top the footpath is not wide enough for a chair and not safe to try and go onto the road to get around...I was driving past this the other day and commented to someone how bad it was and was told"its not such a big deal"...what can you say...?