I cannot ride my handcycle without a multitude of bipeds making unwanted comments as I go by. I am tempted to wear ear buds and play music but I prefer the sounds of nature. I am also hyper aware of my surroundings. Turning a handcycle is akin to turning a tractor trailer. Even more problematic is how others react to me. Last year a guy on a bike going in the opposite direction turned around and followed me for nearly four miles yelling questions at me. The typical reaction when I pass others is "cool". Kids are especially curious. The other day I was forced to a near stop as I passed many people on an awareness walk. As I crawled by at a snails pace I overheard the following exchange between a mother and son.
Son: "Look Mom. That is the coolest bike".
Mom: "That bike is not cool. That man has an ego problem. He wants to be different for no logical reason. He has serious self esteem issues. Never ride a bike like that".
This is why I don't stop. The snippet of this conversation took place within ear shot. I was not more than two feet away from the mother and son. I was very tempted to tell the woman I was paralyzed (oh, the horror) and that she was point blank rude. I chose to remain silent. I saw no reason to engage this woman given her level of ignorance. Demeaning comments are an every day part of life for a person such as myself with an obvious disability. Strangers freely comment about me and my body. I am an open book and no question is too rude or inappropriate. Biped cripple social interactions that take place operate on the premise a biped is superior and the crippled guy is inferior. This plays out in myriad of ways. Let's say you live in Syracuse and feel like riding a bike. At multiple places along the Onondaga bike trail you can download an app onto a smart phone and for $10 borrow a bike.
Gotta love the orange color and old school styling. Let's say you are an undergraduate at Syracuse University and want to go for a ride on a bike. Yup, bipedal students can do this.
What if you are not a biped? You are screwed. No bike riding for the crippled. This is the norm nationwide. Think of the millions of bike shops, hotels and tourist destinations that rent bikes. None of them rent handcycles. You can rent a bike in pretty much every city in the nation. I would love to bike when I travel. Biking is a great way to get around and cover some serious miles. This is not possible for me and other paralyzed people. Yes, adaptive sport programs exist. I am sure given the time and energy I might be able to find an adaptive program willing to rent me a handcycle. The operative word here is might. To find such a program would be a daunting task--I have tried a few times over the years with no success. As I have noted in previous posts, money is a major variable. A biped can buy a bike on line or in a store such as Target for about $200. Hand cycles, like all adaptive sport rigs, are too expensive. A well used handcycle frame would cost about $600. A typical bike shop could provide wheels, brakes, and gears. Theoretically a bike shop could build a bike from the frame out. This would require a level of expertise most do not possess (myself included).
Twenty six years after the ADA was passed into law I remain a problem. The disability here need not be paralysis. Any person with a disability out and about is a problem. Stephen Kuusisto recently wrote the following:
I am a blind person. Notice I’m using people last language since in public I’m blind “first” and a person only in the most conditional sense. It’s not fashionable to say this. What’s popular in “the idioms” is arguing blindness is nothing more than an inconvenience, why it’s nothing really. I wish this was true. But in my experience I’m always a problem whenever I leave my house. I’ve written about this on my blog for close to nine years. Many disability themed bloggers also discuss the subject—this problematized life we endure when we venture out. https://stephenkuusisto.com
I have been writing about the problematized life for as long as Kuusisto. A vibrant online disability rights community exists. I am routinely touched by what other people with a disability write on a host of different media platforms. I am not alone! I have countless brothers and sister who form a distinct and oppressed minority group. I am disabled and proud. Yet I remain lonely in the sort of way old bones ache. Why are there so few scholars with a disability? Why do nearly 70% of people with a disability remain unemployed? These questions lead me to ask where are my people? Well, most of us cripples live on the edge of poverty. Precious few of us are in positions of power. Few of us are in meetings when decisions are being made that will directly impact our lives. We are the unwanted. We are an economic drain and take up way too much space. The charity model of disability remains the norm. Bipeds think they get to choose what is and is not accessible. Of course we are accessible. I hear this all the time. Bipeds don't know what the world accessible means. I show up and cannot navigate the aisles in a given restaurant and only upon arrival do I learn the bathroom is located in the basement. Syracuse.com food writer thinks yes or no is adequate when it comes to access hence the reviews are useless.
What can one do in the face of ableism? Never ever give in. Get on the bus. Get on the plane. Get on the train. Stay in a hotel and expect a wheelchair accessible room to be readily available. Expect every building on every university campus to be accessible. Demand inclusion. Fight the good fight for I know all too well the easiest thing to do is not go out. Not going out the front door will lead to social oblivion. Do not let the bipedal hordes win. I will continue to be audacious. To do the ordinary is to be audacious for we cripples. It takes guts to leave our homes for we know we are unwanted. We are an economic burden. Worse, utilitarian theorists think cripples like me should not exist. At this point in life, I do not care what others think for if I cared I could never leave my home. The world is just too gorgeous to abandon.
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.
Search This Blog
Monday, October 10, 2016
Why I Try Not to Stop
Posted by william Peace at 9:34 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Subscribe to: Post Comments (Atom)
Yet another post on point! Although I will say, following on from your previous post, when you reflect on people with a disability as a social & economic burden (I get the sarcasm) - the shame of it is that: there are more than enough resources to ensure that all people, with or without a disability live healthy, functional and contributive lives. The real burdens are the corrupt bureaucrats, politicians and corporations who exploit labour, steal taxes and then blame the poor, marginalized and different people including people with a disability for the economic and social crisis! How is it possible that such a poor raggedy bunch can cause so much destruction? ;).
Anyway its great to see people like you making sure the bipedal disablers don't get away with this oppression without a fight
I always feel a resonance when you write these posts. Thank you.
What is wrong with that mother? Did someone on a handcycle once break her heart and murder her cat or something? What an awful thing to say, and for no reason.
Post a Comment