thinking about media and disability

For the last three years, I've been creating a list of fictional stories that have characters with disabilities, non-fictional stories of people with disabilities, and visual art that captures issues or ideas related to culture and disability. This weekend I saw, "The Rue Mosnier with Flags" (1878) by Edward Manet. The description next to the painting said, "By contrasting the patriotic decorations on a prosperous avenue with a disabled veteran, the artist called inequities in contemporary French society."

I haven't determined if stories about people who are blind are more common than stories about people who are paraplegic, but it seems that people who are blind are more likely to be portrayed as a "super hero" or "genius" or "oracle" (DareDevil, Zatoichi, Ray Charles, "Blind Justice," Eric Weinmeyer, Oedipus, "The Country of the Blind" by H.G. Wells, etc.) while characters who are paraplegic seem to be more acceptable on prime time television (X-Men's Professor Xavier, Family Guy's neighbor who is a policeman, Malcom in the Middle's Stevie, Born on the Fourth of July, Forrest Gump, etc.). Although, "Blind Justice" and "Becker" bring blindness to prime time television. I have also found stories about people with autism, Down's Syndrome, cerebral palsy, and who are deaf or hard of hearing or quadriplegic (The Waterdance)...but, that's another story and a list that I should keep up-to-date on my blog (someday...).

Today, I read "At War With Their Bodies, They Seek to Sever Limbs" about a condition where a person desires to amputate a healthy limb. Since 1977, several names have been given to the condition, including, apotemnophilia (literally, love of amputation), amputee identity disorder, and most recently, body integrity identity disorder. A person who has this desire said,

It wasn't so much that I wanted to be an amputee as much as I just felt like I was not supposed to have my legs. From the earliest days I can remember, as young as 3 or 4 years of age, I enjoyed playing around using croquet sticks as crutches. I enjoyed thinking about what it would be like to be missing a leg. When we were playing cowboys and Indians, I seemed to be the person who always got wounded in the leg.

I'm interested not only that this story is in the news, but that there are several recent fictional stories about the condition:

At the New York International Fringe Festival last summer, an award for best overall production went to "Armless," a play about a middle-aged suburbanite with the disorder. The playwright, Kyle Jarrow, said his goal was to explore "the line between gross and spooky and funny and poignant."

In November, an episode of "CSI: New York" featured a man with the disorder who bled to death after he tried to saw off his leg. And last month, a screening was held in the East Village of "Pretender's Dance," a short film by Tom Keefe about a young choreographer and her boyfriend who wanted amputation.

I wonder how people will react. Will these stories raise awareness about the issues that amputees face in daily life? Will news and fictional stories increase society's empathy and desire to create change? Or cause people to look at an amputee and wonder, "was it an accident or a choice?" Are there any people who wish to lose their sight, hearing, or cognition?

I hope that these productions raise awareness and start a dialog that encourages multiple perspectives to be expressed that coalesce into a new shared understanding. I haven't seen Million Dollar Baby, yet, but I was surprised that I didn't hear more in the popular media about the protests of the movie and articles such as Seeing Million Dollar Baby From My Wheelchair by Diane Coleman. She writes,

Moreover, the threat of assisted suicide and euthanasia are daily fare for Not Dead Yet. We fight to be heard over the loud voices of players on both sides whose interests should be readily seen as, at best, secondary to the organized voice of those society says are "better off dead." So many of us have died too young, never getting a real chance to live.

In the midst of all that reality, what makes a fictional movie like Million Dollar Baby so disturbing that I want to flee?

As the movie unfolded to its star-powered conclusion, audience members sniffled in pitiful admiration of Maggie's determination to die rather than move on and leave her non-disabled life behind. They were deeply moved by Frankie's redemption through fatherly love, his wish to help her live and his profound sacrifice in giving up everything he had to free her from her "frozen" body. This is the bittersweet ending that inspires so much acclaim.

Perhaps the dialog has begun. Maybe this is why the U.S. is closely watching the Terri Schiavo story. Hopefully, we can set aside the politics and talk about the underlying issues.

One last bit about body integrity identity disorder: reactions by people who have lost limbs to accidents or disease:

[They] are often horrified when they learn about healthy people who seek amputations.

"It's very difficult for people who have been through what they consider to be a devastating life experience to understand why anybody would want to mutilate himself in this way," said Paddy Rossbach, president of the Amputation Coalition of America, an advocacy and support group. "Especially when so many people are having tremendous problems with prosthetic fittings, or access to prostheses, and are living with pain every day of their lives."