Much of the country has been gripped by record breaking low temperatures. I love it. I truly love the cold. Give me a bone chilling arctic front and I am good to go. I love the cold. The only way to improve frigid temperatures is to add a heavy snow fall. Obviously the last week or so has been great. I go outside with my beloved lab Kate at night and before the sun comes up. I love the rock hard terrain and crunch of my wheels as I go over frozen grass. Others I know are not happy about the cold. I saw an elderly woman at the local supermarket yesterday and she was clearly struggling. Her arthritic fingers could not quite grasp coins and she was very slow to check out. The check out ladies working the registers looked miserable. Many had on sweaters and one woman even had a long winter coat on. Truth be told, the front of the store was in fact quite chilly.
I was having a typical day. I took a quick trip to the supermarket like I have down many times before. It was not frigid but very cold--temperatures were in the teens. Since I was going to be outdoors for a very short period of time I left my jacket in the back seat of my car. I was wearing a long sleeve shirt and my favorite heavy bright orange Syracuse sweat jacket. After shopping I went toward my car and saw an older man veer toward me. I knew I was in trouble. I have a sixth sense for this sort of thing. I was about to be accosted. Welcome to my world and screwed up social interactions.
Man: "Hey! Hey you! You! Hey! Hey! Hey!" Now just short of yelling--"You in the wheelchair."
Me: I put my head down and try to become invisible. I am careful to keep my back to the man who is loudly trying to get my attention.
Man: Speaking to mostly my back the man loudly states "hey, you should not be out in this cold weather. Why are you out? How can you be out by yourself? It is dangerously cold."
Me: I quietly ask the man "Please leave me alone".
Man: The man shakes his head as though he is dealing with a difficult child. "People like you, you know in your condition, should not go out in this cold wether. You are in danger. Where is you caretaker? I want to talk to him. He is being irresponsible. Where is he? You could get frost bite".
Me. I glare at the man. But really what can I do? What if I lose my temper? What if I try to engage this man? This man's perception of disability is decades old. I am a charity case. I should be pushed around by a caretaker in white pants and starched white shirt. I should have a lap blanket over my legs. Based on 35+ years of experience I know to engage this man is a risky proposition because the most likely response if I assert myself is fury. I also run the risk of being angrily deemed bitter about my plight (obviously my life sucks). Does this man notice I am glaring at him? No. Does he notice my body has become stiff as a board? No. Does he know the archetype he has created in his head is wrong? No. Does he know that I have endured thousands of verbal assaults? No. Does he know there are days I cannot leave my home because I dread people like him? No. This man is "helping" me. He will feel better about himself and the world because he helped the less fortunate, namely me. Utterly lost is the fact he is asserting his social dominance and demeaning me. He does not get this any level. He is the kindly saint. I am the less fortunate being as such I should not bite the hand that feeds me.
What I described above happens on a fairly regular basis. More often than not such incidents do not bother me. In fact I would have forgotten what took place had I not read yet another excellent short and the point point post by Dave Hingsburger at Rolling Around in My Head. See: http://davehingsburger.blogspot.com/2014/01/elevator-buttons.html?spref=fb In Hingsburger's most recent post, "Elevator Buttons" he wrote:
Over the course of a week I spend a lot of energy abjectly refusing to get on the 'diminishment elevator' and no matter how hard I have to work to keep the door open and block the 'down' button from being pushed, I manage as best I can to stay on equal footing. But it's work and it takes... gumption and courage.
The philosopher Eva Kittay in Love's Labor: Essays on Women, Equality and Dependency calls the "diminishment elevator" emotional labor. I think at a visceral level people with a disability get the social denigration involved. The second you begin using a wheelchair or have an obvious disability your social stature changes instantly. One assumes an unwanted and stigmatized identity subject to the "good will" of others. What I find frustrating in the extreme is that the man that accosted me was clueless. He was an ignorant bigot. He remains an ignorant bigot today. He will likely go to his grave an ignorant bigot. And this is a significant problem. This man is just one of millions of people that assume any human being that happens to have an obvious disability, in my case use a wheelchair, is incompetent. I am inferior, in need of help, to be watched over by my caretaker. It did not dawn on this man that I could lead a typical. No sir, my "problem" was paralysis. There is no social element to disability. I am an individual, an unlucky soul, "confined to a wheelchair".
More often than not, I laugh off such incidents. I tell myself the man is part of an older generation that grew up and absorbed a charity model of disability. The man in question likely never met a person with a disability. Segregation of people with a disability in the American public school system was not effectively broken until the mid 1970s. I tell myself to cut this man some slack. He meant well. Each time I try to follow this line of reasoning I stop myself. This is dangerous--and an untold number of lives have been lost. Stop. Just stop. The path to hell can be guided by good intentions. Stop. I must stop. I must remember. I must think. Eugenics. Sterilization. Institutionalization. "Three generations of imbecile is enough", Oliver Wendell Holmes in Buck v. Bell. Willowbrook. Segregation. Resource rooms. Stigma. Social Isolation. The denial of basic civil rights. The ADA.
Based on this brief and unpleasant exchange I cannot help but conclude that there is no public and mutually agreed upon social consensus about the rights of people with a disability. The law is on the side of people with a disability and has been for the last two decades. The law did not help me one iota yesterday. The law, namely the ADA, has largely failed to end the segregation of people with a disability. Children with "special needs"are shunted off to short buses. Adults with significant cognitive disabilities are placed into "adult programming" such as sheltered workshops and obscure day activity centers. The physical environment remains grossly inaccessible and designed with bipedal people in mind. The justifications used to segregate people with a disability are too often left unquestioned. Our basic human rights are violated on a regular basis and disability is a problem that must be managed. The perverse part of all this is that the people doing the managing know nothing about disability. I do not see this changing any time soon. In theory most would agree people with a disability should be treated equally. The key words here are "in theory". The reality I live is quite different. I am remind of this fact on a daily basis for everywhere I go problems abound; needless problems that are indicative of persistent and ongoing disability based bias. If you don't believe me go ask my mysterious caretaker who cannot be found. If you find my lap blanket along the way please return it.
10 comments:
"Ignorant bigot?" Let's back that down to "he was ignorant." Bigotry is evil. I don't think the man was evil. Give the generational gap its due. As you say, the world is changing, and tending in that change toward the better.
I've been riding around for 54-years, and I've met more than one "diminisher," but I've come to believe it's not my problem. I've also come to believe in the evolution toward positive change for crips. Even with that glass-half-full attitude, I know that we are different, and the human world has trouble with differences.
That's not to "diminish" your post. It is a mirror of what we face.
Gary, I do not want to society to change at an evolutionary pace. I want to foster and witness a social revolution. A revolution in which all people with a disability will be respected and their lives deemed valuable. We both know lives are at stake. Not all people are capable of rejecting the social denigration associated with disability based prejudice that we both experience. I am not willing to back down from ignorant bigot. The man in question may not be evil as you note but he sure was inherently destructive. How many other people has he accosted? How many people were deeply hurt by such denigration? How many times did I, a strong man, not leave my home because of the knowledge I could be accosted? Far too many. We have the fortitude to push back. And like me I suspect you push back for yourself and the next guy that comes along.
I remember once I lost it in a situation like that. I was climbing over a five-foot snow bank between the "sidewalk" and the street, and a woman started shouting at me that the snowbank was high (and who let me go out by myself). I raised my head and looked in her direction. "Really?!" I said, sarcastically, as I gauged the height and jumped down onto the plowed street. "Thank you, I'd never have known!" She went off grumbling about bitter disabled people.
I think most of evil in this world is not intended as evil, yet it results in it. So much of it is embedded in not believing or being able to comprehend that the charity model and the tragedy model of disability actually do harm to actual, real people, and not just every so often, but every single day, every single minute, when they are allowed to subtly influence our thought patterns on everything.
The more I read, the worse the world becomes and the more I'm driven into seeing these destructive patterns everywhere. I just wrote about some poor sap's Happiness Project because so much of it was just *so* wrong, so privileged, so exclusionary, so bad.
So, because it's probably totally not evident, Thank You. Truly.
Tigrlily, When I lose my temper with strangers, and this very rarely happens, I invariably regret it. I have found direct confrontation with unknown others who are ignorant or bias or both is counter productive. The result is just as you described--they walk away grumbling and deem you a bitter jerk.
Extranjera, I suspect the happiness project you refer to is Shawn Burcaw who I took to task a while ago. To this day I get a boat load of hate mail. No one likes it when an uppity cripple pisses on the pity party. Keep up the good fight.
I wonder if what would happen if you were dressed in something quasi-military...
We used to have this sort of thing a lot - We lived out of town and sometimes don just needed to go into town alone - he couldn't drive so he'd get the disabled taxi and off he'd go - I don't know how many times this was queried..."You mean you let him go into town by himself?" I couldn't bloody stop him even if I wanted to - but the attitudes are so slow to change - and sometimes its totally the other way, when he did have a need for help the mqajority would not get involved...he had certain shops in town that he knew the shopkeepers well enough so if he needed the chair tilted back for a few moments they would do it - then we bought a chair that did that... he couldn't handle cold though, would start to shiver like a motor that wouldn't stop and it would took hours to restore his normal temperature...but living in Australia that didn't happen too often
A. Fascinating question. The assumption made would be I was a veteran. I suspect respect and pity would be closely tied together in a social excgange.
Middle. I wonder if the reaction to a person such as myself that uses a manual wheelchair is different from someone who uses an imposing power wheelchair.
Darn it, I actually crocheted a lap blanket for my own crip self! pretty snazzy i gotta say. i can agree with most everything else though. happens nearly everyday and people are like, "why is that a problem?"
Laur. Gotta market the lap blanket like a snuggie
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