Modern Eugenics: The Elimination of a People

publication date: Apr 21, 2008

 | 

author/source: Alan Sverdlik / STAFF

By Alan Sverdlik / STAFF

“Just” People Village in Roswell is an assisted living facility for the disabled.

“First I wiggle her around me like this,” announces 7-year-old Simon Goldsmith as he lifts his baby sister Alice off the floor by the underarms and gyrates. “Then she wiggles me around and jumps on me. Then she jumps on my dad. And that makes me laugh a little, and it makes my dad laugh a lot.”

Reminiscent of scenes from many of our childhoods, there is still something in the rough-housing that hints at an expression of sibling love borne out of contexts and circumstances that few of us have ever known. But Simon isn’t going to go into that right now. Alice, 3, now back on her feet, comes over and gives him a huge hug and they share a giggle. “Sometimes she beats the heck out of me,” he says.

As much as Simon tries, however, the giddiness doesn’t deter Jennifer, 13, the Goldsmith’s firstborn, from bringing up the subject on everyone’s mind, the reason Simon describes Alice as “very, very special.”

“Really, it’s not Down syndrome I worry about,” Jennifer explains, nodding toward the rambunctious toddler, one of two dozen children and grown-ups attending a north Fulton support group for Down syndrome patients and their families. “But she has a heart condition,” one of the disability’s common symptoms, “and she might not make it.”

Jennifer pauses a moment amid the hush that settles over the other youngsters and their parents, and in a barely audible voice, adds, “We take it one day at a time.”

Overcoming The Odds
Scanning the faces bunched together in a converted Sunday school classroom – innocent, mischievous, curious, mirthful – it is startling to consider that most of them overcame daunting odds just to be born, let alone accept a genetic defect with such evident grace. In fact, the number of people with Down syndrome, which can cause mild to moderate mental retardation, are dwindling so rapidly that respected advocacy groups consider them an endangered species whose survivors face a bleak future: lonely, unwelcome, ignored by medical researchers, shunned by insurance companies.

92 percent now aborted
Moreover, advocates say the staggering 92 percent termination rate in Down syndrome pregnancies amounts to eugenics, the pseudo-science used by the Nazis as justification to weed out and murder society’s most vulnerable members.

The use of words that carry barbaric imagery usually enter fevered national debates from the lips of the disreputable. But in the case of Down syndrome, eugenics appears regularly in worrisome comments and papers by ethicists from some of the nation’s most prestigious medical schools. The numbers simply paint an unthinkable scenario: Those who come out of the gene pool with an imperfection face an immediate death sentence.

“I shudder at the thought of ignorantly terminating the pregnancy if we had known beforehand of the handicap,” says Alpharetta telecommunications engineer Michael Dutton, father of Lizzie, 15. “My wife had her when she was 29, at the time too young for prenatal screening.”

“Lizzie has Down syndrome, but she is a great kid who has been a gift to our family in many unexpected ways,” Dutton goes on. “My daughter amazes everyone who gets to know her: She reads, manages public transportation, has a great sense of humor. But few bother. She is, after all, visibly different.”

Putting himself in Lizzie’s place, Dutton finds the prospect of a world without peers “unimaginable.”

“Is this supposed to be some kind of mercy killing?” he asks. “If so, merciful to whom?”

Eugenics’ Roots
Though the word was coined in 1883 from the Greek root meaning “good at birth,” eugenics came to have extremely ugly connotations when used by European racial supremacists to justify colonization in the 19th and early 20th centuries. By the 1930s, it became associated with mass slaughter.

“Who in these so-called enlightened times would want to re-invoke a theory based on a point of view . . . that judges people defective by virtue of their genetic endowment,” writes Daniel Kevles, author of “In The Name Of Eugenics: Genetics And The Uses Of Human Heredity.”

Kevles quotes a French geneticist who deplores the abortion of Down syndrome fetuses “and looks forward to the day when, treated biochemically, one of them grows up to be a geneticist himself.”

“Where do you draw the line?” says Dr. Benjamin Krantz, a visiting lecturer of bioethics at Johns Hopkins School of Medicine in Baltimore, who sees some value in the prenatal testing that determines if a fetus is carrying Down syndrome’s trademark 21st chromosome. “At what point are we engaging in eugenics and not accepting the normal diversity within a population?”

Roswell’s Tolleson Weighs In
The lightning rod in the debate is David Tolleson, a Roswell City Councilman and executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody. Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, the organization tries to insert its own positive perspective into a bitter national divide dominated by depressing medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

Amy Rogers (top) and Crystal Geller (above) both have Down syndrome and live at the “Just” People Village in Roswell.

Tolleson recently visited the U.S. Holocaust Museum in Washington D.C, in part to learn about the Nazis’ campaign to rid Germany of the mentally and physically disabled. Early on, the Nazis cut their safety net by eliminating social programs, Tolleson learned, but eventually put them to death in the name of euthanasia.

The campaign began over “dollars and cents and went downhill quickly,” he says.

Tolleson chooses his words carefully, an instinct honed by electoral politics, and speaks them softly, affecting reason and moderation in emotionally-charged times.

“I’m not suggesting we’re in 1930s Nazi Germany, when someone decided every day who was going to live and who was going to die,” he says. “That would never happen here.”

But there are some lessons that can be drawn from eugenics-based policies of the past that are pertinent to the survival of the Down syndrome population, which now stands at 350,000, according to Tolleson.

Endangered Species
As a segment of the disabled population declines, institutional support invariably recedes, and coveted grant money funnels into other university research projects. The prospects of a cure fade. And the managed care industry, knowing that Down syndrome can now be detected in the first trimester, could theoretically deny coverage to any expecting mother who refuses the tests.

“The classic vicious cycle,” Tolleson says.

Tolleson’s nemesis is the American College of Obstetricians and Gynecologists, whom he blames for skewing couples’ decisions in favor of abortion and failing to see the richness in disabled kids’ lives. He also believes physicians are afraid of being sued for “wrongful birth” if they don’t stress the negatives. For their part, practitioners of reproductive medicine say they’re obliged to present patients with hard information about the condition and recommend the latest screening technologies, which don’t carry the same risk of miscarriage as amniocentesis. The procedures are recommended as a matter of policy, regardless of a mother’s age.

Listening to Tolleson discuss the plight of the disabled in 21st century America is an echo of reformist, utopian thinking of 100 years ago, when political figures like William Jennings Bryan championed the weak as Darwin’s “survival of the fittest” credo swept the country. Those without a full set of faculties don’t fare well “in a society that equates wealth with worth” he says, one that is consumed with producing “designer children.”

Tolleson, who has a 13-year-old boy with autism, thinks expecting parents who abort based on disability are deluding themselves.

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

Clearly, the decision to abort or bear a child with a cognitive impairment is an agonizing one, usually made with the fear of judgment hanging over an already burdened couple. The typical life span is 49, and depending on the individual, Down syndrome can wrack up cardiology bills, upset the dynamics of family relationships and stand in the way of careers and independence.

Medical Objections
The obstetrics/gynecology web site’s links to Down syndrome make it clear that its doctors strive to remain objective, and give couples plenty of space as the moment of reckoning approaches.

“There are many couples who do no not want to have a baby with Down syndrome,” says Dr. Deborah Driscoll, chief of the obstetrics department at the University of Pennsylvania, whose comments appear on the site. “They don’t have the resources, the emotional stamina, the family support.” 

The Story Of Amy T.
Had it been as recently as the 1990s, Amy T., a suburban Fulton County grade school substitute teacher, would not have been routinely offered amniocentesis. At 30, she would have fallen below the 35-and-over category of pregnant women, who, because of increased odds of genetic mutation, were considered the primary at-risk group.

When she got pregnant with her third child, however, she was told by her obstetrician that screening was advisable. And it could be done with a state-of-the-art sonogram and two blood tests in the first trimester, rather than by “amnio,” in which a needle is inserted into the uterus, creating an outside chance of a miscarriage.

When her genetic counselor called to tell her the fetus screened positive for the 21st chromosome, Amy fell to her knees in the schoolyard.

Having watched her husband shrink from scenes of suffering, whether in movies or during his father’s terminal illness, she didn’t think her marriage could survive the compromises and complications of a severely ill child.

“It was never anything I ever considered until I got the bad results,” Amy T. says. “It was the hardest decision I’ve ever had to make.”

Amy T.’s request that her last name be withheld comes out of fear that that those who know her casually – school colleagues, church parishioners, neighbors – will look down on the family for opting to abort a Down syndrome baby. All but family members and very close friends were told she miscarried.

“I don’t look at it as though I had an abortion, even though that’s technically what it was,” Amy T. says. “There’s a difference: I wanted this baby.”

For Amy T., Down syndrome was reason enough to abort a very-much wanted pregnancy. Judging by the overwhelming evidence, the disability is tipping the scales devised by couples for weighing whether to continue, and the medical establishment seems to be sending the message to patients that the goal is to avert the birth of children with disabilities.

If Heartbreaking Choices, an internet support group for couples who’ve aborted a fetus for health reasons, is an accurate indicator, there are also very few outlets for grief for those who second-guess their choice.

No One Home
And then there’s the specter of eugenics.

When the Nazis were in the throes of The Final Solution, Hitler vowed to build a museum with figures of a tribe – the Jews, of course – who once inhabited the earth but were eventually wiped out.

No such gruesome, gratuitous depiction of evil accompanies the accelerating drop in the Down syndrome population, but the basic math does make us wonder what the world would be like without kids like Alice, merrily using her daddy’s midsection as a trampoline without the slightest notion that anything’s wrong with her.

Really, there isn’t. Just ask her older brother Simon.