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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.


Assiya said...

Thank you for this. It is nice to know I am not alone in finding that article painful. Thank you also for helping me to understand why I found that article so hurtful.

Anonymous said...

I was greatly disappointed when I read that article yesterday. Why is it so easy for reporters to to miss the high points in articles like this? I was pleased when one of her students said they should just have two elevators if one breaks all the time. Leave it to a kid to be on the right track and state the obvious.

Matthew Smith said...

The stuff about evil spirits reminded me of someone I spoke to through Facebook shortly after posting some articles about the Gilderdale affair on my blog. She had ME herself (not too severely though) and had some theory about it being caused by spirits heating the body up and causing inflammation.

The thing is that most experts say it's caused by auto-immune reaction to a viral infection. But having read some of Lynn's internet postings and what her friends said of her, she sounded like a very pleasant and gracious woman, always concerned about the well-being of others despite her own abysmal condition. Not someone who sounded like she was possessed by evil spirits.

Unknown said...

I read the article, one writer friend telling me it was almost like an "essay," by which is meant that the writing was lyrical. Me? Forget the reporter's cluelessness. Forget the overcoming, courage, victory storyline that we see all the time. What I wanted to read is some acknowledgment that to be constrained by society provokes rage. Or let's put it this way: were the woman to have written the piece herself, it would have been a very different "story." What the NYTIMES readers received was a feel-good reflection of society's take on a PWD who actually integrates his or herself into society, which is meant mostly to assuage some vague guilt.

I'd rather have more elevators, ramps, and cheaper wheelchairs.

Unknown said...

well said my man.

william Peace said...

The responses are, well, heartwarming! Yesterday was a doom and gloom day. I felt alone, isolated, and had little hope people with a disability could ever be treated equally. Ah, what a difference and a few comments can have!
The article in the NYT was terrible. In retrospect what bothers me the most is the comment was made by her supposed friend and doctor. How can such a person dehumanize her supposed friend?
Matthew, Evil spirits, religious beliefs, the concepts of suffering for sins, and belief in God all cause significant social problems for people with disabilities. I for one have been driven away from the Catholic Church by thoughtless and bigoted people I encounter.
Gary, Yes, we do indeed need more elevators, ramps, and cheaper adaptive equipment. We will never get these things until society values such devices and the people that use them. The lack of value placed on such items is present but ignored in the story.

FridaWrites said...

Gary, you are so right that the constraints cause rage. I found myself in this boat last night about a family event that's inaccessible. It is painful, painful, like being in solitary confinement.

William and all, I know we all feel alone in this sometimes, but I think we're not. And yet here I am, feeling alone here.

This is an insightful post--the NYT is really influential and more people need to confront their disability bias. We all know the couple of reasons why people have to dehydrate themselves--which leads to kidney stones and other issues.

This has got to be the meanest phrase I've ever seen in a newspaper: "a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world." And most abled people are probably too dense to see that and would defend it.

Sometimes the "Option 2" crips are less disabled but have less help and resources--people won't make accommodations, for instance, or they don't have money for transportation, specialized computers or software, adaptive sporting equipment, DME, etc. And sometimes they are far more ill.

Becs said...

I just got back from the local Library Friends Board Meeting. One of the librarians was very pleased with himself for getting funding for a program for "special needs" children.

I raised my hand and said, "That's great but perhaps you're not aware that the library's ladies room is not wheelchair accessible."

The crowd - only one other brown head in the batch - protested that the doors were awfully wide.

I said, "Yes, the door to the bathroom itself is large. The door to the handicapped stall is large. But a wheelchair will not fit entirely into the stall. Pediatric power chairs can be surprisingly large. The child will likely need a care giver in the stall with her."

Everyone looked dumbfounded and then the board president said, "Oh, the mayor got that ADA grant but he wasn't going to do anything because he says everything's accessible." (Note: The mayor is an ass.)

I pressed my case and when I was done, said to the other brown head, "It's a matter of civil rights." She nodded.

Perhaps I will be giving Hizzoner a phone call tomorrow.


william Peace said...

Becs, Ignorance is bliss. When it comes to disability ignorance is rampant. Your story is ever so typical. What is out of the norm is your support for equal access--an effort that too often meets stiff resistance. Good luck!

Kateryna of the Cenotaph said...

Thank you. I made the mistake of reading that mess while fighting my insurance for my medication, so I was already in a bad space. I have meds now, but the article is still as bad as I recall. The amount of hatred that was spewed into writing it... and no, the writing was NOT Lyrical. Reporting shouldn't be an Essay either. I used to work for a paper and the writing was hackneyed due to the writer's attempts to write around blatantly obvious needs.

william Peace said...

Kata, What amazes me is the long article in question got by an editor. To me this shows just how deep disability is in our society.