A few days ago, November 12 to be precise, Stephen Kuusisto wrote a brief but fascinating post, Dusting Your Brains: A Disability Rant, on his blog Planet of the Blind. He wondered if there is a control, alt, delete reset for the human brain when confronted with inane social interactions. Kuusisto related a story about being at an airport and being told he had to use a wheelchair because "it is the rule". Ask any person with a disability and they can regale you with a host of entertaining stories. Airports are great fodder for ignorance and illogical so called rules. For instance, once in a while I am asked by airline personnel "can't you walk just a little bit". Ignorance and inappropriate social interaction is not limited to the airport. I have been accosted in just about every social setting one can imagine. Once I was screamed at for block after block in New York City by a homeless man who was convinced I was the "Anti-Christ". Health care professionals also have a penchant for saying remarkably inappropriate things. When my son was a little boy a physician told me "people like you should not have children". He said this in an emergency room while he was stitching up a cut on my son's finger. Gee, thanks for sharing.
Kuusisto wrote that people in disability land need to have a good relationship with their reset button. On this point, I could not agree more. When confronted and disrespected by the hordes of bipedal people that surround me daily I get angry. My anger burns a whole in my gut. I cannot let things go and replay in my mind over and over a negative interaction. I wonder could I have done something to avoid the person that demeaned me. But one sensation more than any other burns bright-- anger. Here I sit 34 years post paralysis and 22 years post ADA and yet ignorance abounds. Social and needless architectural barriers remain common place. Worse yet, my reset button is not working well. I have been avoiding social interaction. I have been going out at odd times when I know few people will be milling about. In part I am hesitant to go out because we are the verge of the holiday season. All that supposed good cheer is freely shared. I saw the Salvation Army guy last night ringing his bell. I hate those fucking bells and pushy Salvation Army bell ringers. What sticks in my craw though is the false good cheer and panic to buy stuff. Black Friday is gross, materialism at its worst. In terms of disability the holiday season is oppressive. A charity model of disability springs to the forefront of the minds of people that know nothing about disability. All of a sudden everyone wants to help me. Everyone smiles at me. Old ladies pat the top of my head and tell me I am a good boy. When I get gas people want to help me put my wheelchair back in the car. The offers of assistance come fast and furious. None of them are sincere. Well, actually that is incorrect. Many years ago I was with my son a few days before Christmas. We were driving into New York City to see an all too rare afternoon NY Rangers hockey game at Madison Square Garden. On the drive into the city I got a flat tire. Amazingly I got the flat next to a highway gas station. I pulled into the small parking lot thankful I was not on the side of the road. I open the trunk, pull out the jack and the spare tire. I am about to work on loosening the lug nuts when a young man taps me on the shoulder and asks me if I need help. I am indecisive, unsure to say yes until the man's girlfriend says he is a mechanic. Cool. The young man helps me out and changed the tire in world record time. I reach into my wallet to give him some cash. He says no thanks. I tell him come on buy your girlfriend some flowers. I get a more emphatic no. My son suddenly chimes in "Dad you don't need to give him money. Santa is watching and he is going to be way impressed. They are going to make out like bandits on Christmas for helping us". When I am ready to give up on humanity I think of this story, take a deep breathe and hope my reset button will work better tomorrow.
I think your anger and constant advocacy and writing about these issues is a sort of reset button for the world. I thank you for that during this tyrannical month of "gratitude" that drives me nuts.
ReplyDeleteThis was good and thanks for sharing! I tried it this weekend and it worked....tra la la.....
ReplyDeleteMmm, thanks for this post and your whole blog , William. I'm just waking up to consciousness of the depth of disability discrimination and I found this site via a search on Paul Longmore (I'd only just heard of him...)
ReplyDeleteI'm English, living in the Canary Islands, polio 62 years ago. Mostly tried to assimilate and smile all my life - but the rage is bubbling its way to the surface and it is helpful to find others (you, Tom Shakespeare) who've explored the terrain a bit.
As I say on my own blog, this worm is slowly and laboriously turning...
Best wishes
Margarita
You are right about the anger you feel directed at you for just being there...although not disabled my husband was for 25 years - some truly dreadful things but you would know them all - and then rarely comes someone like your young bloke the mechanic - and it only takes one - Once again I am thanking you for your blog... Since publishing my book my mind seems to have switched into neutral and I need to get active again - to get involved because I have the understanding - just got to find out the best way to use it.
ReplyDelete