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.