PWD's: SHUT UP! You're not inspirational enough!
I have a disability. This means I have a shortened lifespan, and if you have a disability, you probably will have one too. I also have days that suck. I felt the need to state that because this year from the able body world rises an old idea with the stench of rotten fish. The idea is that there are no disability/impairments, but rather just lapses in time between one able bodied state and another. And that there is no disability/impairment itself but rather a state of learning/joy/euphoria/wisdom/amazement which even when paralyzed does not involve itself with piss or s*** or frustration.
What frustrates me the most about this 'stench of a disinterred corpse' idea is that they are once again raping the experiences, memoirs and memories of US, the PWD's. Because we do not happen to see ourselves and our lives as a series of silent dots between able bodied states to make this fantasy dance and lurch for their mental comfort. The film The Diving Bell and the Butterfly has, so far, won nine awards, and I am sure it will win many more. It happens to have the same title as a memoir written by Bauby about his experience with ALIS (Locked In Syndrome). Except, that in this film, Bauby and family live the life which is palatable to the able bodied, not the one he actually wrote about: his feeding tube beeping while his catheter has fallen out covering him with piss, ignored for 30 minutes, while the tape loose on his eye tickles his lashes.
In the book he is taken by his family on Father's Day to the beach. There are many onlookers, and in his essay of it called "Through a Glass Darkly" he says, "I have become something of a zombie father." (you can see this section as film HERE) Talking of his children, "I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders." Of his son, "Theophile dabs with a Kleenex at the thread of saliva escaping my closed lips. (this is word for word in the film, at which point the film stops Bauby's words while the real person and author Bauby continues) His movements are tentative, at once tender and fearful, as if he were dealing with an unpredictable animal." We are given the son in the film dabbing with kleenex then a cut to hugs and dancing, the family ALONE on the beach. Gone is the fear, the uncertainly that people have with severely disabled, with members of humanity or family they can't understand.
But these real emotions, all erased, to create a scene society desires: a happy family dancing on an empty beach. This 'fantasy' of disability ends with his wife, saying "You are the most amazing man I have ever met." In his essay, Bauby writes, "The children run to stretch their legs on the beach once more before leaving, and Sylvie and I remain alone and silent, her hand squeezing my inert fingers. Behind dark glasses that reflect a flawless sky, she softly weeps over our shattered lives."
After I mentioned the film in passing on my blog I was sent an anonymous email saying that while the person "loved" the film they would RATHER see a film about Dr Jill Bolte Taylor. Because HER stoke story has a "happy ending" (she doesn't die and she returns to complete and full able bodied function) and directed me to a 20 minute presentation on TEDTalk. Dr. Taylor was a brain scientist and while she talked for twenty minutes, the time between her stroke and when she was able to take the stage, with full body function again was eight years. The time discussing those eight years is four seconds; literally, "It was eight years until I regained full function." The talk presents the stroke as an enlightenment, an great insight which opened her up to right versus left brain thinking. Because I have had many small and a few larger strokes, I was interested in her experiences, then repelled, by this woman who turned the 40 minutes of her struggling to call for help while part of her brain died, into a series of jokes for the audience. The theme was, "I was an able bodied scientist and now I am an able bodied and ENLIGHTENED scientist." About the eight years, the frustrations, the loss of memory, loss of function, of swearing, of crying, all gone in a four second line between jokes and statements about choosing the "we instead of the me." Her book, My Stroke of Insight, is a bestseller, a "powerful voice" on stroke recovery.
In case this is news to people on OUCH: S*** happens. You probably did not plan on dealing with a disability/impairment or the way society treats those who have one. You probably have gone through a lot of emotions and struggles regarding how you view yourself, your own worth, and what you consider accomplishments and achievements, separate from able bodied society's values. I have. I have good days and bad, and I do not like that the collective populous want to think my life is about people dancing around me while I am told I was/am the greatest lesbian and lover who ever lived. Nor do I wish them to think of my days, or the destruction of my brain as an 'inspirational' coda between being an able bodied member of society and my return to it. I live; I live in a day, the same number of seconds as those in the able bodied world. Perhaps they don't take as many opiates as I do; or need as much assistance but even that, having a stranger shampoo your hair, is living. It is not always insightful or inspirational, and my eventual death does not negate the meaning or experience of my life, nor conclude that it isn't a "happy ending." It is a universal ending. No one has gotten out of life alive yet and by eliminating those eight years or silencing the real voice of a person adjusting to disability/impairment, society has written us out of the collective human condition. And while I may have to take that news sitting down, I don't have to be silent and accept it.
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