A significant snow storm is expected Sunday afternoon running into Monday morning. Based on the weather predictions this winter, I am skeptical. Regardless, I plan to do laundry today rather than Sunday. I do not mind the laundromat largely because it is always spotlessly clean and the washers and dryers always work well. The laundromat is never dull. I have met my fair share of drunks, young and old. Many college students pass through. Lots of families too who are often worn out. I see people doing giant piles of laundry as a way to make an extra buck or two. Unlike most days however I am dreading the laundromat. The last time I did laundry I had a typically nasty confrontation. By typical here I mean an able bodied person who insisted on helping me when no help was needed. Sometimes people who express a desire to "help" are not helpful and are only interested in demonstrating their superior social status. When I reject such help the reaction is often swift and nasty. Another from of "help" is tied to a charity model of disability. My life is tragic. My disability a terrible fate and at some level feared. I am in need of help. Note the use of the word need. I need the help of others. Easily dismissed is the fact I do not need nor do I desire any help. Such "help" is unwanted and I do my level best to avoid what I call do gooders. I have learned over the years to avoid the do gooders above all others. The "help" they insist on providing has nothing to do with me. The unwanted help that is forced upon me is about being kind to the less fortunate. I am not a human being but rather a charity case. In supposedly helping me the do gooder feels better about them self. I am in this case a prop.
I avoid do gooders and when I am confronted with such a person to gently and politely make it clear I do not want help. Regardless f how polite I am the negative reaction is swift. I had such a confrontation the last time I did laundry. I have played this over in my head many times. I continually try to rationalize the violently negative reaction on part of an utter stranger. As already noted, last weekend I was doing laundry. It was pretty quiet. A family came in with two kids and both parents. By itself this was unusual as most parents likely split chores. Two things quickly became apparent. First, the parents had no clue how to control the behavior of their kids. My expectations for a child's behavior in a laundromat is limited. Good behavior is a major plus and bad behavior in the form of wilding running around and making a disproportionate amount of noise the norm. Thankfully many kids arrive with an electronic game seemingly attached to their body and zone out. Second, and most bothersome, the kids in question behaved badly for a specific reason: they did so to get the attention of their parents. They were quick to correct and equally quickly ignored their kids. The kids were smart and the parents not so much.
I folded my clothes as fast as humanly possible. I wanted to get out of the laundromat because I could sense trouble. I had more laundry than usual and needed to make two trips to my car that required I go directly past the family described. I could not go by fast enough. Again, I sensed trouble. As I passed the kids to the door I saw the mother rise from a chair and speed over to the door. We arrived at the door at the same time. She was in my way and I could not get by. She could not reach the door handle and my face betrayed me. I had a dead pan annoyed look on my face. In response the woman said to me in a voice loud enough for every person in the laundromat to hear "I am a good American! I am helping you with the door but no". She then raises her voice to a near scream: "You have to be a fucking asshole don't you. You are such a bitter fucking bastard and are too good to accept my offer of help. I hope you rot in hell you prick. What is it with you people? You use a wheelchair and want to make everyone in the world just as miserable as you are. Well FUCK YOU!"
I have had many such incidents like this over the years. Rejecting unwanted help is a complex endeavor for people with a disability. I have no idea why but all week I have been disturbed by this ugly confrontation. Initially I was disturbed because I was sure the mother was going to use this as a tool to teach her children all people that have a disability are "fucking bastards". Not exactly the way to foster progress or disability rights. What I did not realize until this morning was that all my thoughts revolved around providing the mother with a pass for her inappropriate anger if not fury. I briefly mentioned this incident to my good friend Steve Kuusisto and he replied: Some days I just hold my head. The predatory ableism we endure is relentless. That woman's desire to help was a product both of her gum chewing Christianity and her lifetime absorbing low drivel--her world view was just a bunch of strung together Super Bowl commercials".
I love the phrase predatory ableism. It reflects my life long advise to people who know nothing about disability. I routinely tell people who express an interest in disability rights to utterly reject all they have been taught and absorbed about disability. Virtually everything they know and were taught in secondary school as well as observed in the mainstream media is wrong. I came to this conclusion shortly after I was paralyzed. I learned this in a visceral way when I lived in New York City. I have been thinking a lot about this period of my life as I have just finished a long essay for a law school review journal about parenting and how my son and the ADA have come of age. What I vividly recall is the fight to get wheelchair lifts on city buses. In the 1980s many street confrontations took place nationwide. Protests started in Denver in 1978 when a group of 60 people with a disability surrounded a brand new city bus without a wheelchair lift and refused to leave. What is striking about the Denver bus protest was the tinderbox it lit. Similar protests spread like wild fire and disability advocates responded in ways that were unheard of. We fought back. We were not silent. When pushed we pushed back. What people realized was we were not the image they created in their mind. We were not weak. We were not stupid. It came to a shock for some but we were people--human beings with flaws and desires like the bipedal hordes that surrounded and oppressed us for decades. And what did we cripples want? We wanted to have the same rights as any other American. Among those rights were a good education, unfettered access to public transportation, and, gasp, a job and place to live.
Thanks to my good friend I am not thinking about the woman and confrontation at the laundromat. I am thinking of the day a man in very expensive business spit on me as I was getting on a bus and told me his tax payer dollars were being wasted. I think of him every time I get on a bus and no one bothers to look up from their cell phone. I think of protesters in Dallas who threw supposedly blood stained money at the Dallas transit board of directors. I think of the protesters in Denver that surrounded the bus and put their health at risk. I think of Mary Johnson who chronicled what took place in the Ragged Edge. We crippled people may not have a Rosa Parks but we have a collective will that makes me feel a deep connection to my people. Tonight I plan on going to bed and falling asleep to the book The Ride to Public's Buses: The Fight that Built a Movement. This book should be required reading in every secondary school in the nation. Perhaps then I can give different advice to those that express an interest in disability rights. Until we equate disability rights and civil rights as being one in the same ugly confrontations such as the one I had at the laundromat will only continue.
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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Saturday, February 7, 2015
Predatory Ableism
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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