As the nations of the world gather in New York to negotiate a treaty to defend the rights of the disabled, one category of persons with disabilities has no rights whatsoever — those who have yet to be born. The medical establishment is on the one hand devoting tremendous resources to improving the lives of disabled persons while at the same time expending significant energy and resources on targeting the disabled for pre-natal elimination.
In developed world prenatal testing for fetal defect has become the norm. Doctors routinely prescribe testing, because they are afraid that if a pregnant woman is not offered the full range of testing and bears a child that is not perfect, the parents will sue claiming wrongful birth.
The pressure on physicians leads to pressure on mothers. Women are not simply offered prenatal testing; they are pushed to undergo tests, some of which put their unborn child at risk. In some cases the health care professionals do not provide truly informed consent; instead they tell the pregnant woman that the test she is being offered will “prevent birth defects.” When a patient is offered a test to “prevent” a particular illness, the assumption is that the doctors want to diagnose the problem so they can offer effective treatment or a preventative regime. Killing the patient is not generally considered an acceptable method of “prevention.”
Women who refuse prenatal testing report being treated like naughty children who don't know what is best for them by the physician and the staff. Those who begin the process and then decide not to proceed with tests that could endanger the fetus spend months worrying only to discover that in most cases there never was a problem. Still greater pressure is put upon women who refuse to abort a fetus diagnosed as defective. Such women report being told that they are “ruining their lives,” harming their families, or being selfish. In some cases their obstetricians have refused to continue to treat them.
Certain disabilities are specifically targeted by prenatal testing. These include Downs Syndrome and neural tube defects. This is particularly sad since seeing the smiling faces of Downs Syndrome children competing in the Special Olympics was an important factor in changing public attitudes toward the disabled community. The clear goal of the pro-testing and elimination movement is the total elimination of Downs Syndrome. All this is happening when the prognosis for healthy and a happy life for a person born with Downs Syndrome has never been better. Those women who refuse testing or refuse abortion when the testing reveals Downs Syndrome report that although they were initially frightened this child has proven a blessing for their entire family.
Neural tube defects, such as spina bifida, cause severe disability, but real prevention is possible. The medical profession has known for decades that the incidence of neural tube defects can be greatly reduced by making sure that women receive sufficient amounts of folic acid in their diets or by supplements before they become pregnant and during the first months of pregnancy. Folic acid is inexpensive and can be added to common foods and in fact can be found in common orange juice. This should be an international priority.
Routine prenatal testing has been expanded and testers in their search for serious defects also come upon less serious problems. Parents are offered the choice of having a less than perfect baby or terminating the defective fetus. In one study the researchers appeared puzzled that many parents who were told that their unborn child had sickle cell anemia — a serious disease that affects persons of African descent — did not abort their babies. The assumption appeared to be that parents would embrace the opportunity to eliminate this disease.
Routine testing for fetal defect also reveals a fetus' sex. In cultures were being female is considered a disability, this has lead to the abortion of girls and a massive male/female imbalance, the social consequences of which we have only just begun to experience.
All this inevitably affects public attitudes. When parents sue doctors who don't offer testing, they are saying to every disabled person “Your life is not worth living.” It is only a small step from pre-natal elimination of the disabled to post-natal elimination through withholding treatment.
If women at risk for carrying a Downs Syndrome fetus are “expected” to test and abort, then it won't be long before people will look at those persons with Downs Syndrome who slipped through undetected and ask “Why didn't your mother get tested? Why didn't she abort you?” Community support for persons with Downs Syndrome will shrink even as their potential expands.
It is inevitable that this will lead to a hardening of hearts that all the handicapped access ramps in the world won't fix.
Dale O'Leary is a writer, pro-family activist and educator living in Rhode Island. Her e-mail address is daleoleary@thefactis.org.
