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Jewish World Review Nov 30, 2011 / 4 Kislev, 5772 Down Syndrome adult speaks for herself By Nat Hentoff
http://www.JewishWorldReview.com |
The foundation of this constitutional republic, as we used to be taught, is individual liberties -- as in the Bill of Rights. Enter 25-year-old college student Melissa Reilly, brought to us by health news writer Kimberly Hayes Taylor in "Down syndrome's rewards touted as new (contrary) test looms" (msnbc.msn.com, Sept. 29):
"She travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling and swimming. Additionally, she interns for a Massachusetts state senator and tutors pre-school students with Down syndrome in math and reading."
Darkly, the other "new (contrary) test looming" could greatly lower the future possibilities of more Melissa Reillys. As I previously reported, the new test will enable pregnant women to find out more quickly whether their child will have Down syndrome, and I expect nearly all of these women will abort the child. Right now, 92 percent of American mothers do just that.
The vital reality of having Melissa Reilly among us represents the experiences of other Down syndrome survivors in three recent surveys by doctors at Boston's prestigious Children's Hospital.
Author of the lead study, as Taylor reports, is Dr. Brian Skotko, a clinical fellow in genetics at Children's Hospital. It is his hope -- and mine -- that "the research on more than 3,000 Down syndrome patients and family members published in the October edition of the American Journal of Medical Genetics, will serve to better inform expectant parents and clinicians providing prenatal care" so that the other looming test will not condemn countless other Melissa Reillys to death.
If this is the first you are reading of what may well become this mass rescue of American lives, the indication is that much of our instant media has found other more titillating subjects on which to concentrate.
Skotko found "that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were (themselves) better people because of their sibling with Down syndrome."
And dig this about a third study of how adults with Down syndrome feel about themselves: "99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked."
Testimony from Melissa Reilly: "I love my life 100 percent," she said, explaining that her brothers' and sister's friends are her friends, too, and she accompanies them on outings and vacations.
"I love my life for the things I do, and the places I go. We are one happy, loving family."
To be balanced, Taylor also interviewed Arthur Caplan, a professor of bioethics at the University of Pennsylvania. I know his work well. He and I both write for Free Inquiry magazine, and I also read his tough-minded, empirical work elsewhere.
Taylor writes that Caplan notes these Children's Hospital findings are limited by the fact that "families willing to document their experience in a survey tend to be those with a Down syndrome child on the healthier and more high-functioning end of the spectrum."
Taylor further writes that while Caplan acknowledges the study's "powerful data" and "important perspective," it may not "change people's minds."
That's why I am writing this column -- to try to persuade as many as I can to not easily accept the common treatment of Down syndrome and condemn those diagnosed with it to death. How hopeful am I? I am not brimming with optimism. As Caplan reflects: "Even though society has learned more about what Down syndrome (Americans) can do, it still turns out that some prospective parents won't be willing to accept that story.
"I'm not saying it's not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that's so obsessed with perfect children, competition, better performance and plastic surgery enhancement."
Still, Skotko concludes: "These results will be quite shocking to many Americans, who might have some misperceptions about what it means to have Down syndrome. Family members have spoken and have said life is positive with Down syndrome."
I now call upon Dr. Jerome Lejeune, discoverer of trisomy 21, the defective chromosome in Down syndrome. In The Lancet, one of the leading medical magazines in the world, he wrote on Jan. 5, 1980:
"The whole history of medicine is at hand to answer any … death-doctor. Those who delivered humanity from plague and rabies were not those who burned the plague-stricken alive in their houses or suffocated rabid patients between mattresses. … Victory against Down syndrome -- curing children of the ill-effect of their genetic overdose -- may not be too far off, if only the disease is attacked, not the babies" (my book, "Insisting on Life," Human Life Review, 2005).
Melissa Reilly was not attacked. She often travels around the country inspiring not only Down syndrome children and adults but also showing the rest of us that using death as a form of therapy for parents reveals what we are becoming as a people.
It's not too late for us to change.
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