Suppose you are an intelligent, healthy, beautiful, happily married woman. And suppose you decide to get pregnant. Is that anybody's business but yours and your husband's? If you are KCBS-TV anchorwoman Bree Walker, according to Los Angeles radio talk-show host Jane Norris, it's everybody's business.
Walker has a rare genetic anomaly called ectrodactyly, in which the bones of the fingers and toes are partially fused. She already has a 3-year-old daughter with the same condition, and this year she chose to bear another child with her new husband (and fellow anchor), Jim Lampley. Last July Norris devoted a two-hour call-in show on KFI-AM to whether Walker should be having a baby. Walker didn't take part in the program but Norris invited listeners to comment on her childbearing decision-and made her own disapproval quite clear. Advocates for the disabled were incensed, comparing the spirit of the show to the legislative climate earlier in this century that permitted involuntary sterilization of the mentally retarded in 29 states. Last week an angry Walker, along with her husband, two dozen national disability-advocacy groups and 100 other individuals, filed a complaint against KFI-AM with the FCC. "I had always called myself a disability-rights activist," says Walker, "and I felt I couldn't carry that torch with any honesty if I didn't do anything about this personal attack."
On the radio show, Norris raised a rhetorical question. "Would I bring a child into the world," she asked, "knowing that the child had a very good chance of having this deformity-webbed hands?" Norris then answered herself: "I have to say, I don't think I could do it." Walker objected to Norris's tone, and to the suggestion that her childbearing decision was irresponsible."No one has the right to predict or judge the quality of another person's life," she says.
For a growing number of families there is nothing hypothetical about the decision to bear a disabled child. Ectrodactyly is not detectable in early pregnancy (and can only sometimes be discerned later through ultrasound images). Walker and Lampley were willing to accept the 5O percent chance that their child would inherit the disorder (he did). But most common birth defects can now be diagnosed at an early stage of fetal development. Using amniocentesis and a newer technique called chorionic villus sampling, physicians can identify such conditions as Down syndrome, sickle cell anemia and cystic fibrosis early enough for parents to decide whether they wish to continue the pregnancy. Prenatal testing is routinely offered to women over 35 and to people whose family members have suffered from inherited disorders.
The decision to abort a child with a defect is never easy. Some parents avoid it by foregoing prenatal tests. Others use them only to find out what's in store. But those are the exceptions. Genetics counselors say most parents elect--however painfully-- not to bear children who will suffer from serious defects. The trend appalls some advocates for the disabled. Prenatal screening amounts to "finding out which people are disabled and eliminating them," says Nancy Becker Kennedy of ADAPT (American Disabled for Attendant Programs Today), a national group headquartered in Denver. "If someone had made that decision about the 43 million Americans who are disabled, we wouldn't be
Emily Pearl Kingsley, the mother of a 17-year-old son with Down syndrome, is grateful that she didn't miss out on what she calls "the most enriching experience of my life." Kingsley, a staunch pro-choice advocate who lives in Chappaqua, N.Y., works with parents considering whether to continue a Down pregnancy-or to keep a Down child already born. She encouraged them to make the decision based on new findings that many Down syndrome kids are far more capable of learning than was formerly believed. (Her son Jason attends a regular public school, studying a standard 10th-grade curriculum in a class for the mildly learning-disabled.) The National Down Syndrome Adoption Exchange maintains a waiting list of 50 to 60 adoptive families, says Kingsley, but many people still don't realize that "these children are so nearly normal. "
The issue of eugenics-the effort to "improve" the gene pool by imposing societal control over who may reproduce-has always been explosive. Extreme proponents of eugenics believe would-be parents with defective genes should not perpetuate them, by self-screening or avoiding pregnancy altogether. This view, however, is not widely held. "The ramifications of society butting its nose into people's [reproductive] lives are serious," says Dorene Markel, a genetics counselor at the University of Michigan Medical Center. No one is genetically perfect, she observes. And as genetic knowledge expands, so does the range of conditions society could try to eliminate from the gene pool.
Despite the controversy, KFI program director David Hall says the station stands by its show on the Walker case and Norris's right to raise the issue. "We have no regrets," he says. Norris is far more forthright. "I didn't say Bree Walker was wrong," she insists. "I didn't say she was immoral, I didn't say she should have an abortion. [But] I personally think it's an unfortunate choice on her part."
It's up to the FCC to determine what action, if any, should be taken against the station. While the commission has the power to revoke licenses, in the past it has done so only in cases far more extreme than this one. Still, to the disabled, the ultimate outcome of the case is probably less important than what has already occurred: the unified expression of righteous anger over an unwelcome attempt by outsiders to tell them how they ought to lead their lives.