I did my least favorite chore yesterday. I went to the local laundromat. Those that read my blog posts on a regular basis know I have had many inappropriate social encounters while doing something as mundane as laundry. When compared to the past, what took place yesterday was a minor incident. I choose to do laundry at odd times. Who does their wash on Tuesday afternoon? I hoped no one. I was wrong. A few students from the local college were doing their wash. I never have issues with the college kids--they are glued to their cell phones or lap tops. The people I watch out for are men and women my age and older. This a generalization but I remain wary at all times. I literally never know what people will say to me. Well one man was watching me from afar and I thought he was going to check his dryer when he suddenly veered my way and said "I did not know you people could do laundry. You are amazing." I was not impressed. I did not reply. I intensely focused on folding my clothes and scrupulously avoided any eye contact. The man pressed on: "You are inspiring. Really, I could never live in a wheelchair. I am going to tell all my friends about you". I look up and cannot hide my distaste. The man says "What? Why the look?". I reply "Think about what you are saying". Utterly immune he does not yield: "You are amazing." We have already established that I am amazing I want to reply but based on previous experience being a wise ass is counter productive. Then the light bulb goes off in the man's head: "You got here by car! You can drive! Wow, I am going home and will tell everyone about you".
This social exchange and thousands like it are a part of my life. They are part of my life 25 years after the Americans with Disability Act. They are part of my life after 40 years of progressive legislation designed to protect the civil rights of all people with disabilities. The glacial nature of such demeaning comments has worn me down. When I was young and full of piss and vinegar I might have told this man to fuck off. I rarely if ever do that because being confrontational does not work. Being confrontational has a boomerang affect. Instead of highlighting the fact this man is an ableist any anger on my part or snarky reply makes me look bad. I am instantly the problem. A sweet and innocent comment and high praise prompts anger? Wow, that stereotype of the bitter cripple who is mad at the world gets reinforced. Bipedal others know all. I am angry because I cannot walk. Using a wheelchair is bad. My life is hard. The ordinary is impossible. I am the plucky cripple who gamely moves on with life. My life sucks don't you know. How do I explain to an utter stranger that my life is quite good. I teach honors students at Syracuse University and have the respect of students and faculty members alike. How do I explain inspiration porn that has been imposed on me is deeply objectionable? How do I explain the long history of disability based oppression? How do I explain all this to a man in the local laundromat and do so in no more than a minute? Simply put, it is impossible and a classic Catch 22 situation.
I have had far more negative social interactions than the one described above. I don't know why but this social exchange rattled me. The rattle here is a deep rooted sadness. I have been paralyzed since I was 18 years old and have spent my entire adult life as a paralyzed man trying to make others see me as something more than a tragedy. I am a human being. I make a conscious effort to not hurt others. I do my best to be kind. I take great pride in teaching young men and women who are starting their adult lives by attending college. I was having a good day and this exchange ended it. I was once again reminded my existence is less. Indeed, my existence is so miserable being able to do laundry and drive a car is an accomplishment. The bar for people with a disability cannot be set any lower. I returned home sad. I remained sad for many hours. I wondered why these sort of interactions are commonplace. The rational part of my mind could easily explain the sordid and depressing history associated with disability based bias. I know about the cultural implications of the ugly laws, forced and coerced institutionalization, segregated mass transportation, the exclusion of children with a disability from public schools until the mid 1970s, the lack of accessible housing, high unemployment rates associated with disability, poverty etc. I teach this to my students. The bottom line is that I am a human being and I was hurt. In contrast, the man I encountered was happy. He was going to call his friends and tell them about me. I assume they too will be inspired by my ability to do laundry and drive a car. If this is the case it will take generations before we people with a disability are truly equal. I often think about the progress of other groups discriminated against. Black people do not live in a post racial America. Women still experience gender based discrimination on a daily basis. Donald Trump wants to build a wall between America and Mexico to keep out rapists and illegal immigrants.
Occasionally I am asked, "Come on Bill, progress has been made. It wouldn't kill you to point out the positive developments". I cannot deny progress has been made. I cannot deny the law is firmly on the side of disability rights. All this is true. But educating people one by one in a country of over 300 million people is not an efficient means of educating the general public and that is what I am forced to do on a daily basis. I must be socially astute and polite in the face of ignorance. I change my schedule and routine to avoid people like the man encountered. I am regularly put in a position in which I must explain my existence has value. I do this and much more as a means of self protection. I am forever on guard and wary of others. This takes a mental toll large and small. The butchers bill yesterday was sadness. I shook it off as I always do before I went to sleep. Today is a good day, its sunny and warm (that does not happen often in Syracuse). My beloved lab Kate and I went for a pre dawn walk. I am going to campus to meet a foreign scholar who is young, smart, ambitious, and eager to learn. I am hopeful. I need to believe in goodness. I find belief in many places. Tonight I am going to Grey Rock Farm, a local CSA, for dinner. I love the sounds and smells of small working farms that abound in Central New York. Farms make me feel grounded. It reminds me of what a gift life is and that we humans are but a small cog in the cycle of life. Part of that proverbial cog is disability and bodily differences. Human variation is good and a vital part of evolution. I just wish others saw what I do when disability is present. I see the best of humanity and infinite possibilities.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Wednesday, May 11, 2016
Ignorance Can Hurt
Posted by william Peace at 9:29 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Comment by Andrew sent to me via email.
If anyone wonders what's wrong with perjorative, degrading terms such as "wheelchair-bound" or "confined to a wheelchair"...
If anyone wonders how the way disability is portrayed on television and film is ridiculous and degrading...
If anyone wonders how inspiration porn, treating any and every mundane act as though it were like a toddler "going potty" for the first time, could possibly have any negative effect on our lives...
THIS is why. And it manifests itself in the laundromat, the grocery, the employment office --- any social interaction.
The young man, like most bipedals, is saturated with the view that we are totally incapable, and when capability is shown, that the proper response is to shower the poor cripple with cloying praise to bring some sunshine into a life that HAS to be miserable and not worth living.
I look for a renewed reinforcement of this view with the release of the film, "Me Before You".
I get comments like this from perfect strangers all the time when I'm out and around in my power chair, especially in communal venues like Starbucks. I often feel the need to "educate" others to such a degree that it over time, became my default means of interaction. It does take its toll psychologically on you: many times I simply don't even respond because it would analogous to trying to convert a true believer in apartheid to the notion of racial equality, except in this case, disability rights! Such random incidents are why disability legislation are rarely enforced to the full extent of the law as envisioned by leaders such as Justin Dart and Judy Heumann. But the fight against ignorance continues..
Hi, Just discovered your blog via Open Doors. It's like reading my own thoughts. I foresee binging on your archive soon.
My fave interaction was a very sweet, ancient old lady who saw me putting my shoes back on. "Oh my goodness! you put on your SHOES!!" Oh, for heaven's sake, they were slip-ons. That one was so beyond that it mostly makes me laugh.
The one that still peeves me off 10 years later is the time my friend & I were standing in line at an upscale clothing store. We were having a really important/fun/can't really remember conversation, and the woman in front turned around and said, "Wow, that's a really cool chair" (iBot). And since I was mid-interesting discussion, I smiled politely and said, "Thanks." (as if I'd designed it). When we got back to my car, my friend turned to me and said, "Wow, you were really rude back there." What??!! Because I said thanks? Because I prioritized my right to continue my business over the woman's curiosity?
Thanks for letting me vent and thanks for your blog.
I love reading your blog. As someone with a spine that's held up with metal screws and rods and who walks with a cane, I frequently run across people who think it's perfectly fine to physically grab me when I'm wobbling along, in no danger of falling, smiling like they've rescued me from some horrible danger and being very offended when I tell them to get their hands off me. Even my husband says that I should be nicer to them. He muses that I must be grumpy because my back hurts. Yes, my back hurts but that's not why I'm pissed when some yahoo touches me, thinking he's being Sir Galahad for helping the crippled lady. My husband is a good guy, but he doesn't get it. Lots of people don't get it.
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