I have a stack of final exams on my desk that must be graded. This is serious work with a firm deadline I always meet. Yet I will do almost anything to avoid grading the exams. I love teaching but not grading. Grading exams is hard work and students are under great pressure to get good grades. I sympathize with students but can only base my assessment of their work based on what they hand in to me. This leads to frustration and, right now, procrastination in the form of this post and a need to fill the gas tank of my car. Yes, I needed gas but I really did not need to go out and fill up the tank this morning. I wanted to avoid my exams, get out in the early morning fresh air, and enjoy a short drive. So there I am pumping my gas when I noticed the blue wheelchair logo on the pump in the bright sunlight. I have not read the little wheelchair logo post in quite some time. However, I do know the law--here I refer to the ADA as it relates to assistance for disabled drivers at self service gas stations. What does the law state? Gas stations have the duty to assist disabled persons at the gas pump. The ADA requires self service stations to provide equal access to their customers. If more than one employee is on duty a gas station must provide refueling assistance to a disabled individual who has a handicapped placard or license plate. Customers with a disability let the service station know they need help by honking twice or signaling an employee. Gas stations may not charge a disabled person for pumping their gas.
I have been driving for over 30 years. Not once have I seen or heard of a disabled person being assisted at a gas station. Like anyone else, I have pumped my own gas on rainy days, in frigid cold, and searing heat. No one has ever asked me if I needed or wanted help. While I have never tried to seek the assistance of a station attendant, I find it hard to imagine this would go over well. Gas stations present many obstacles in terms of access. Bathrooms, aside from often being filthy, are rarely accessible. Ramps to enter the station are often blocked by fire wood in the winter and cases of water in the summer. If one can enter a station the aisles are so narrow they are impossible to navigate. Beer is stacked high and junk food abounds.
While the obstacles at gas stations and an obscure part of the ADA such as assisting disabled gas station customers may seem to be inconsequential, it highlights a larger problem. The ADA is just not taken seriously or poorly understood. Add in the ADA is often interpreted by people who know little about disability nor have an interest in making a business accessible and it is no wonder barriers abound. But it is not just businesses that seek to avoid the ADA. Schools, both public and private, routinely ignore or avoid ADA regulations. I had to shame my son's secondary school into making the auditorium accessible and even when they renovated it did not follow ADA guidelines. The university where I teach is grossly inaccessible and is a SUNY school! My point is that the lack of access at my local has station is symbolic of a much larger problem--the ADA is ignored or, worse, unknown. I hope that with the 20th anniversary of the ADA around the corner this may change. Moreover, it is my hope that the ADA will become known for what it really is: civil rights legislation. While I have great hopes, given the dismal state of the economy and lack of interest, I do not really expect the 20th anniversary of the ADA to resonate with the general public. However, I am planning on having a big party at my home next July to celebrate. While most Americans do not care, I for one I am grateful and proud to know a law like the ADA exists and that we elected legislators who had the wisdom to pen such civil rights legislation.
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.
Friday, May 7, 2010
Monday, May 3, 2010
Is Being An Ordinary Human Possible
It is a gloomy morning and the weather matches my mood. I am not happy and I know why. I feel estranged from society and grossly misunderstood by the average citizen. Indeed, I feel like a cartoon character. I can never win for two popular perceptions of disability exist and dominate cultural discourse. Option one: I am a super cripple able to do amazing things. I am married or divorced, employed, and participate in outdoor activities. Yes, we cripple people can ski, kayak, camp, and go for hikes. For leading an ordinary life we super cripples are put on a pedestal and admired because we have "overcome our disability". Most importantly, we super cripples put all those other lazy crippled people to shame as they surely spend their time feeling sorry for themselves. Option 2: The socially dependent mess. These people lack the character to overcome their disability. They have no job. They live at home with family well past an acceptable age or worse yet are dependent upon the government. The dependent mess has no life, sits around feeling sorry for themselves and have no future. I despise both these simplistic and misleading options.
How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category--the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid--the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story "Bent Not Broken" by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as "From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit--a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world" were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who "counseled" Manderson and secured life saving surgery for her dramatically states "I couldn't live inside her body".
Deconstructing the NYT story is of no interest to me. I have done this before and it is not worth the effort to do so again. Rather, what I am amazed at are the issues raised and dismissed or utterly ignored in the story. Manderson is a minority within a minority as the presence of women with a disability is unusual. Manderson is also a woman of color from Montego Bay, Jamaica who was incorrectly diagnosed with muscular dystrophy when she was two years old. She moved to the United States in 1995 where she excelled academically. She gradated from New York University with an MA. She is a mother and is currently a teacher at an elementary school. These bare bones facts are about as ordinary as ordinary can be. However, scattered in the story are the following:
Manderson is dropped off at school an hour before he colleagues at a locked handicapped accessible entrance.
She uses Access-a-Ride.
The elevator where she works is often broken.
She often is forced to dehydrate herself at work.
She moved to the USA when a local doctor offered to treat her for "evil spirits".
Her motorized wheelchair cost $35,000.
Golly is she not an amazing woman to overcome all of the above. In a word, no. What Manderson is overcoming is an utter lack of support for the law, civil rights legislation, known as the ADA passed almost 20 years ago. Many of the so called obstacles Manderson encounters are illegal or certainly wrong and were supposed to have been eliminated long ago. At no point does the article mention that Access-a-Ride is on of the worst para-transit systems in the United States. No mention is made of why she must arrive well before her colleagues or at an accessible entrance that is locked. No mention is made of why the elevators are broken or that moving a class is a legally required reasonable accommodation. No mention is made of why her wheelchair costs as much as a car. No mention is made of why she regularly dehydrates herself at work. No mention is made of how she managed to escape institutionalization in Jamaica. No mention is made of how she managed to get into or graduate from New York University. What do we get instead? Drama and more drama and life saving surgery replete with x-rays to accompany the story. A fascinating life that could have been used to highlight its complexity is reduced to a carton image of a woman overcoming her disability. No wonder people do not understand disability and it cultural implications. No wonder people do not think the ADA is civil rights legislation. In the place of real reporting, real information we get simplistic heart warming stories about a super cripple that has overcome her disability. Those ignorant about the social obstacles people with a disability encounter on a daily basis are not discussed. Social progress is not made, stereotypes remain common place, and people with a disability continue to remain the most disenfranchised minority in not just the USA but the world. No wonder I feel estranged from society.
How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category--the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid--the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story "Bent Not Broken" by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as "From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit--a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world" were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who "counseled" Manderson and secured life saving surgery for her dramatically states "I couldn't live inside her body".
Deconstructing the NYT story is of no interest to me. I have done this before and it is not worth the effort to do so again. Rather, what I am amazed at are the issues raised and dismissed or utterly ignored in the story. Manderson is a minority within a minority as the presence of women with a disability is unusual. Manderson is also a woman of color from Montego Bay, Jamaica who was incorrectly diagnosed with muscular dystrophy when she was two years old. She moved to the United States in 1995 where she excelled academically. She gradated from New York University with an MA. She is a mother and is currently a teacher at an elementary school. These bare bones facts are about as ordinary as ordinary can be. However, scattered in the story are the following:
Manderson is dropped off at school an hour before he colleagues at a locked handicapped accessible entrance.
She uses Access-a-Ride.
The elevator where she works is often broken.
She often is forced to dehydrate herself at work.
She moved to the USA when a local doctor offered to treat her for "evil spirits".
Her motorized wheelchair cost $35,000.
Golly is she not an amazing woman to overcome all of the above. In a word, no. What Manderson is overcoming is an utter lack of support for the law, civil rights legislation, known as the ADA passed almost 20 years ago. Many of the so called obstacles Manderson encounters are illegal or certainly wrong and were supposed to have been eliminated long ago. At no point does the article mention that Access-a-Ride is on of the worst para-transit systems in the United States. No mention is made of why she must arrive well before her colleagues or at an accessible entrance that is locked. No mention is made of why the elevators are broken or that moving a class is a legally required reasonable accommodation. No mention is made of why her wheelchair costs as much as a car. No mention is made of why she regularly dehydrates herself at work. No mention is made of how she managed to escape institutionalization in Jamaica. No mention is made of how she managed to get into or graduate from New York University. What do we get instead? Drama and more drama and life saving surgery replete with x-rays to accompany the story. A fascinating life that could have been used to highlight its complexity is reduced to a carton image of a woman overcoming her disability. No wonder people do not understand disability and it cultural implications. No wonder people do not think the ADA is civil rights legislation. In the place of real reporting, real information we get simplistic heart warming stories about a super cripple that has overcome her disability. Those ignorant about the social obstacles people with a disability encounter on a daily basis are not discussed. Social progress is not made, stereotypes remain common place, and people with a disability continue to remain the most disenfranchised minority in not just the USA but the world. No wonder I feel estranged from society.