One of Us: Conjoined Twins and the Future of Normal
http://www.100md.com
《新英格兰医药杂志》
"Why not change minds instead of bodies?" asks Alice Domurat Dreger in her new book in reference to people who are born with bodies different from those of us who consider ourselves normal. Her primary subject is conjoined twins, one of the most extreme examples, but she also brings into the story people with cleft lips, dwarfs, giants, and hermaphrodites. Since we cannot conceive of being willing to live with these abnormalities, we usually think that such conditions should be fixed by modern medicine, if possible. That, says Dreger, is the problem. Normalization procedures may sometimes be the best choice, but they are not the only option. Many people with unusual anatomies are completely comfortable with their bodies and derive their personal identities from them. It is the discomfort of their families and communities that most often exerts the pressure to change them.
(Figure)
Conjoined Twins Daisy and Violet Hilton, circa 1927.
By permission of Wellcome Library, London.
Conjoined twins are in some ways the most urgent issue to confront, since high-risk separations are more often life-or-death situations than are other corrective procedures. Dreger understands the reasons for such separations, especially the fact that modern medical techniques have made them possible and usually successful, but she challenges our idea of what constitutes success. She finds it is often limited to the brief survival of one or both twins or subjecting survivors to years of hospitalizations and surgeries. Separations that require the deliberate sacrifice of one child in order to increase the viability of the other also force us into extremely difficult ethical decisions. To support her case for alternatives, Dreger looks at present-day and historical conjoined twins who have lived to adulthood. She finds that they all, with one recent exception, would not want to be separated even if they could be.
Dreger makes telling analogies between people with these conditions and those whose "different" anatomies provoked discrimination in the past — women, blacks, and homosexuals. In these instances, it was society's attitude that changed, and Dreger would argue that the same change could occur in the way we think and feel about the "differently bodied." She sees hopeful signs that this process is beginning. Documentaries and even tabloid-television talk shows that allow audiences to see how these people live and hear them speak for themselves can serve as sources of empowerment, rather than exploitation. Medical schools are inviting people with these conditions to talk to medical students about disability and difference. Families can be helped to adjust to a "different" child and encouraged to postpone some treatments until the child is old enough to participate in the decision. Long-term follow-up studies of corrective surgeries, although still too few, have made some physicians wary of routinely proceeding with normalization procedures "at all costs," because in some cases practitioners now see the costs as too high.
Discourse on disability is a growing phenomenon in academia and in the popular press, but Dreger's book stands out for her extensive use of both historical literature and the current media. More important, she draws on her personal relationships with many of the people she writes about and even her experience as a relatively new mother. She believes that our ignorance about the differently bodied is often the biggest impediment to their ability to lead happy and productive lives, and she provides ample reasons to ask ourselves the question "Why not change minds instead of bodies?"
Gretchen Worden, B.A.
Mütter Museum, College of Physicians of Philadelphia
Philadelphia, PA 19103
Editor's note: Gretchen Worden died in August, while this review was in press.(By Alice Domurat Dreger. )
(Figure)
Conjoined Twins Daisy and Violet Hilton, circa 1927.
By permission of Wellcome Library, London.
Conjoined twins are in some ways the most urgent issue to confront, since high-risk separations are more often life-or-death situations than are other corrective procedures. Dreger understands the reasons for such separations, especially the fact that modern medical techniques have made them possible and usually successful, but she challenges our idea of what constitutes success. She finds it is often limited to the brief survival of one or both twins or subjecting survivors to years of hospitalizations and surgeries. Separations that require the deliberate sacrifice of one child in order to increase the viability of the other also force us into extremely difficult ethical decisions. To support her case for alternatives, Dreger looks at present-day and historical conjoined twins who have lived to adulthood. She finds that they all, with one recent exception, would not want to be separated even if they could be.
Dreger makes telling analogies between people with these conditions and those whose "different" anatomies provoked discrimination in the past — women, blacks, and homosexuals. In these instances, it was society's attitude that changed, and Dreger would argue that the same change could occur in the way we think and feel about the "differently bodied." She sees hopeful signs that this process is beginning. Documentaries and even tabloid-television talk shows that allow audiences to see how these people live and hear them speak for themselves can serve as sources of empowerment, rather than exploitation. Medical schools are inviting people with these conditions to talk to medical students about disability and difference. Families can be helped to adjust to a "different" child and encouraged to postpone some treatments until the child is old enough to participate in the decision. Long-term follow-up studies of corrective surgeries, although still too few, have made some physicians wary of routinely proceeding with normalization procedures "at all costs," because in some cases practitioners now see the costs as too high.
Discourse on disability is a growing phenomenon in academia and in the popular press, but Dreger's book stands out for her extensive use of both historical literature and the current media. More important, she draws on her personal relationships with many of the people she writes about and even her experience as a relatively new mother. She believes that our ignorance about the differently bodied is often the biggest impediment to their ability to lead happy and productive lives, and she provides ample reasons to ask ourselves the question "Why not change minds instead of bodies?"
Gretchen Worden, B.A.
Mütter Museum, College of Physicians of Philadelphia
Philadelphia, PA 19103
Editor's note: Gretchen Worden died in August, while this review was in press.(By Alice Domurat Dreger. )