Miss-Delectable
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http://www.theglobeandmail.com/serv...y/LAC/20051203/BKREAD03/TPEntertainment/Books
It's hard to believe that 60 years ago, U.S. president Franklin Roosevelt refused to let himself be photographed in his wheelchair. Today, the media offer extensive coverage of those with disabilities, from actor Christopher Reeves, the former Superman, left quadriplegic by a fall from his horse, to Vancouver's newly elected mayor, Sam Sullivan, also quadriplegic.
The United Nations (which today marks the International Day of Disabled Persons) offers a broad definition of disability: any restriction in normal activities caused by an impairment. This means most of us are disabled in some way. Because I've been profoundly deaf since my teens, I have a special interest in stories about deafness. The one that resonates best with me is Bonnie Tucker's remarkably honest The Feel of Silence (Temple University Press, 1995).
Tucker, a U.S. professor of law, was first diagnosed as profoundly deaf at the age of two. By then, she was lip-reading, and pretending that she was hearing. She even managed to keep up her pretence for the first six months of dating the man who became her husband (eventually he left, saying he was tired of her deafness). When I met her a few years ago, she bristled at the notion that she had denied her deafness. She said she was simply being pragmatic: Because society looks down on the disabled, her success depends on her razor-sharp ability to make quick decisions as to whether to bluff or not.
One of the themes of Tucker's life is festering anger. She detests being dependent on others to understand what is happening around her. Once, her luggage was put off an airplane in the pouring rain because she didn't hear a message over the public address system asking her to claim it. She had asked two different flight attendants to alert her to any announcement that might affect her. Neither did, and her feeling of powerlessness resulted in her punching a security guard.
Already managing with deafness, it is blindness that frightens and fascinates me. I'm not alone: After cancer, blindness is the health condition most feared around the world. José Saramago's terrifying parable Blindness was terrifying precisely because it was about people randomly going blind. But my favourite book on blindness is by the British author John N. Hull, whose On Sight and Insight (Oneworld Publications, 1997) is based on his daily recorded diary, where he tries to understand the nature of his blindness, which developed as a result of detached retinas. As Hull slowly accepts his state, he comes to see that he has a new life, whole and integrated: not a cake with a slice missing, but a new, smaller cake.
His descriptions of rain are wonderful. When he opens the front door of his house on a rainy day, he can make out the contours of his lawn from the drumming sounds of the rain on grass, the fence from the drops sounding out its shape, the location of bushes from the splatter of water on their leaves. He wishes that the rain would come indoors, to render all that is invisible in his silent rooms visible. A professor of religious education, Hull engages in the age-old quest of searching for spiritual value in his blindness, concluding gently that "to be grasped by blindness is to be grasped by a demand for a mutual humanity."
Tucker and Hull say that they wrote their memoirs to increase the public's understanding of their disability. My third author, however, wrote his story to anchor his very self while his disability threatened to engulf it and destroy him. Jean-Dominique Bauby, the author of the magnificent memoir The Diving Bell and the Butterfly (Knopf, 1997), was a Parisian bon vivant with a fondness for cashmere sweaters and red sports cars, and the editor-in-chief of the French women's magazine Elle, when one day a massive stroke left him unable to speak or to move any part of his body but his left eyelid.
Bauby used an enormously tedious means of communicating, blinking his left eye at the letter he wanted as someone read a list of letters of the alphabet ordered by their frequency of use. In his book, he mourns his inability to make witty comebacks, even as he shares them with us. "My communication system" he says, "disqualifies repartee: The keenest rapier grows dull and falls flat when it takes several minutes to thrust it home." But, each day for two months, he "dictates" his 139-page book to an assistant, letter by letter, blink by blink.
While his body was as if encased in a diving bell, his mind, he writes, was free to flit about like a butterfly. It is impossible to be unmoved by Bauby's courage, his wit and his wide-ranging imagination as it takes him back to the travels of his youth, and allows him to see, smell and feel people and things outside the confines of his room.
After 15 months, Bauby died in a hospital in northern France. But he wrote a masterpiece, an inspiring demonstration of grace and determination in a seemingly impossible situation. His disability may seem like the ultimate disability: What could be worse than being unable to speak or move? Yet, he found a way to talk to us, to grab us by the collar and say, look, this is what it's like. It could happen to you.
It's hard to believe that 60 years ago, U.S. president Franklin Roosevelt refused to let himself be photographed in his wheelchair. Today, the media offer extensive coverage of those with disabilities, from actor Christopher Reeves, the former Superman, left quadriplegic by a fall from his horse, to Vancouver's newly elected mayor, Sam Sullivan, also quadriplegic.
The United Nations (which today marks the International Day of Disabled Persons) offers a broad definition of disability: any restriction in normal activities caused by an impairment. This means most of us are disabled in some way. Because I've been profoundly deaf since my teens, I have a special interest in stories about deafness. The one that resonates best with me is Bonnie Tucker's remarkably honest The Feel of Silence (Temple University Press, 1995).
Tucker, a U.S. professor of law, was first diagnosed as profoundly deaf at the age of two. By then, she was lip-reading, and pretending that she was hearing. She even managed to keep up her pretence for the first six months of dating the man who became her husband (eventually he left, saying he was tired of her deafness). When I met her a few years ago, she bristled at the notion that she had denied her deafness. She said she was simply being pragmatic: Because society looks down on the disabled, her success depends on her razor-sharp ability to make quick decisions as to whether to bluff or not.
One of the themes of Tucker's life is festering anger. She detests being dependent on others to understand what is happening around her. Once, her luggage was put off an airplane in the pouring rain because she didn't hear a message over the public address system asking her to claim it. She had asked two different flight attendants to alert her to any announcement that might affect her. Neither did, and her feeling of powerlessness resulted in her punching a security guard.
Already managing with deafness, it is blindness that frightens and fascinates me. I'm not alone: After cancer, blindness is the health condition most feared around the world. José Saramago's terrifying parable Blindness was terrifying precisely because it was about people randomly going blind. But my favourite book on blindness is by the British author John N. Hull, whose On Sight and Insight (Oneworld Publications, 1997) is based on his daily recorded diary, where he tries to understand the nature of his blindness, which developed as a result of detached retinas. As Hull slowly accepts his state, he comes to see that he has a new life, whole and integrated: not a cake with a slice missing, but a new, smaller cake.
His descriptions of rain are wonderful. When he opens the front door of his house on a rainy day, he can make out the contours of his lawn from the drumming sounds of the rain on grass, the fence from the drops sounding out its shape, the location of bushes from the splatter of water on their leaves. He wishes that the rain would come indoors, to render all that is invisible in his silent rooms visible. A professor of religious education, Hull engages in the age-old quest of searching for spiritual value in his blindness, concluding gently that "to be grasped by blindness is to be grasped by a demand for a mutual humanity."
Tucker and Hull say that they wrote their memoirs to increase the public's understanding of their disability. My third author, however, wrote his story to anchor his very self while his disability threatened to engulf it and destroy him. Jean-Dominique Bauby, the author of the magnificent memoir The Diving Bell and the Butterfly (Knopf, 1997), was a Parisian bon vivant with a fondness for cashmere sweaters and red sports cars, and the editor-in-chief of the French women's magazine Elle, when one day a massive stroke left him unable to speak or to move any part of his body but his left eyelid.
Bauby used an enormously tedious means of communicating, blinking his left eye at the letter he wanted as someone read a list of letters of the alphabet ordered by their frequency of use. In his book, he mourns his inability to make witty comebacks, even as he shares them with us. "My communication system" he says, "disqualifies repartee: The keenest rapier grows dull and falls flat when it takes several minutes to thrust it home." But, each day for two months, he "dictates" his 139-page book to an assistant, letter by letter, blink by blink.
While his body was as if encased in a diving bell, his mind, he writes, was free to flit about like a butterfly. It is impossible to be unmoved by Bauby's courage, his wit and his wide-ranging imagination as it takes him back to the travels of his youth, and allows him to see, smell and feel people and things outside the confines of his room.
After 15 months, Bauby died in a hospital in northern France. But he wrote a masterpiece, an inspiring demonstration of grace and determination in a seemingly impossible situation. His disability may seem like the ultimate disability: What could be worse than being unable to speak or move? Yet, he found a way to talk to us, to grab us by the collar and say, look, this is what it's like. It could happen to you.