This weekend I read a dreadful article in the New York Times. On April 19 in the Arts section on Dance an article, "Still Dancing in Her Dreams", by David Barboza appeared. The article was about a Chinese dancer Liu Yan, considered to be China's foremost classical dancer. The entire focus of the article was about how Liu Yan was paralyzed in an accident two weeks before the Beijing Olympic Games (she was to be a featured performer). Many such stories of life before and after paralysis appear in newspapers. The vast majority of such articles focus on how hard the transition is from able bodied to disabled with scant attention paid to why such a transition is difficult. I try to avoid reading these articles because they tend to be maudlin, overly sentimental, and leave the reader with a singular impression: thank God I am not the one that is paralyzed. The article by Barboza takes this genre of writing to an extreme. Barboza makes it crystal clear being paralyzed is a tragedy of epic proportions. Nothing could be worse than paralysis for it destroys one's career, ambition, and life. A few examples of the overwhelming negativity include the following:
"At the peak of a golden career Ms. Liu lost control of the very limbs that experts say made her dances so magical".
"She is now struggling to come to grips with the unimaginable while hoping beyond hope that some day she will walk and even dance again".
"Where she once had incredible control, now there is none".
"Her dreams of creating her own dance dramas have evaporated and she is still only 26".
And what does Ms. Liu Yan have to say about paralysis? Here are some quotes courtesy of Barboza:
"Life is not that sweet or beautiful after an injury," she said tearfully." You confront a lot of dilemmas and pain".
"Don't be too sad for me. I'll be strong".
"From dancer to a paralyzed person--its a bitter reality".
"I can't take it. Before I could lift my legs to my head. And now my legs lie dead on the bed".
In contrast to Liu Yan I have had over thirty years to become accustom to paralysis. The transition from being a person that can walk to one that uses a wheelchair is not easy. Yet in looking back at this transition the easiest part was physical. We humans are remarkably adaptable and it does not take long to learn what rehab people call activities of daily living. The hardest part of paralysis is the social transformation. Thanks to the New York Times article my thoughts went back to my first forays in public as a paralyzed person using a wheelchair. I instantly hated the looks of pity, scorn, and sorrow when I interacted strangers. It was not until I got to graduate school that I learned there was nothing wrong with me--I did not have some sort of horrible inherit human flaw everyone could see except me. At Columbia I met Robert Murphy who gently suggested that I was the same person I was before I was paralyzed. He told me that the skewed social interaction I experienced had less to do with me than it did with society's assumptions about the meaning of disability. What I discovered in a primal way was that I had acquired a stigmatized identity. When normal and stigmatized individuals interact Erving Goffman called this a "primal scene of sociology". That is well established social guidelines are undermined when a significant flaw exists, in my case my presence as a person that uses a wheelchair. Goffman made this observation in the early 1960s and after reading Barboza I cannot help but wonder if anything has changed.
Paralysis is a unique problem and society is particularly resistant to changing its bias against those that use a wheelchair. This fact totally eluded Barboza and many others. I know this because I still encounter skewed social interaction. This makes me shake my head. Why are people so dense? Why did Barboza not focus on what possibilities remain open to Liu Yan? Perhaps her life after paralysis could have been used to discuss the role adaptive dance has yet to play in Chinese culture. Surely Barboza is aware of Gimp, a dance performance that was recently reviewed in the New York Times. No, Barboza like many others sees paralysis as nothing more and nothing less than a tragedy. Until this thought process changes in his mind and that of society paralyzed people will continue to be confronted with Goffman's primal scene of sociology. Surely we as a people and culture can do much better.
7 comments:
Thank you so much for replying to this article...The singular focus on how hard it was to adjust to being disabled seemed to elicit nothing but pity for Lui Yan, and while her situation is sad and unfortunate, the article (as you point out) said nothing about the realities for disabled women in China, whether she could find work (beyond mentioning ever-so-briefly that she was thinking of going back to school) what kind of social supports were available, or the quality of the treatment she was receiving. I thought the fact that the story of her injury was covered up was particularly interesting, but that was only briefly touched on. For example, what is the attitude towards disability in China, how does her treatment (being someone famous) differ from that of an ordinary Chinese citizen. As a result, I found it hard not to get mad at her, even though her response wasn't the problem at all, but rather the way it was framed by the article.
Thank you for this critical and well thought-out response.
Akheffernan, I really try to avoid these post spinal cord injury articles. They have not changed in 30+ plus years. The NYT article was worse than most. I was prompted to write because little is known about the life of people with spinal cord injury in China. Based on what I have been told, most people with spinal cord injury do not survive, it is considered a fatal injury. The author could have penned an important story by asking an entirely different set of questions. A truly wasted opportunity.
I noticed this article too, but gave it up after the first paragraph. I had hoped that it might deal with wheelchair dancing, yet it was anything but. Just more wheelchair pity. Gak.
Becs, Gak indeed!
Just a quite note to remind you of Blogging Against Disablism Day next Friday. I don't think you've taken part in previous years but it would be great to have you along.
Great post! I think "highly physical" people (dancers, athletes) will always have a harder transition... but compare this to the reaction of an actor who is blazing trails and trying different roles.
Full disclosure: I've had a major crush on this actor (Mitch Longley) since he was on the soap ANOTHER WORLD!
Daisy, As a generalization, I agree athletes and those physically active can have a harder time shortly after paralysis. But this is where adaptive sports comes in and has been a wonderful development. Most people I know, virtually all really, adapt and move on with life after paralysis. The real struggle is social and economic. Adaptive sports gear for instance is extremely expensive and beyond the means of most people. I find the economic implications of disbility the most frustrating.
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