When it comes to the issue of a person’s right to choose whether or not to terminate their pregnancy, I’m pretty unwavering. I figure who the hell should have the right to make such a monumental decision besides the pregnant person? A judge? Ha! Imagine if we all had to go to court to get permission from a judge before we made any of our major life decisions. But I must admit that there is one right-to-choose scenario that really does give me pause.
I’ve heard a lot about people who choose to terminate their pregnancy when a prenatal test reveals that their fetus will be born with a disability, such as Down syndrome. It distresses me to hear this, because I fear these folks are making decisions they may come to deeply regret. That’s because they have been brutally misinformed about what it’s like to live with a disability by people they consider to be experts. If they consider something like Down syndrome to be a fate worse than death, then, obviously, something’s gone terribly wrong.
I could have been a victim of all of this if I were a lot younger. I don’t have Down syndrome, but I have lived my whole life with another physical disability. There were no prenatal tests that could detect it back when I was born, but there are now. And I’m sure that many potential parents of today are opting to abort because of a positive prenatal test result, based on stupid, old, negative stereotypes about disability.
Another danger of this is that it perpetuates the dehumanizing medical model of disability, which blames the victim by identifying the presence of a disability as the reason why people with disabilities are so often left behind. Thus, it seeks to eradicate disabilities. It places no onus on inaccessible societies to change by accommodating people with disabilities. This is why the most pernicious stereotypes about disability are rooted in the medical model.
But what is the proper course of action? Some so-called pro-life types consider themselves to be on the same side as the disability activists who have taken on this issue. But I don’t trust them one bit, especially those who come at this from a hardcore religious perspective. They’re often the first to oppose public support programs that a lot of disabled folks can’t live without, such as Social Security and Medicaid. When it comes to these people, I agree with former lawmaker Barney Frank, Democrat of Massachusetts, who said, “The Moral Majority supports legislators who oppose abortions but also oppose child nutrition and day care. From their perspective, life begins at conception and ends at birth.”
Opting for abortion because of a prenatal test result is such a big problem that federal legislation, and all kinds of state legislation, has been enacted to attempt to address it. The federal legislation, signed into law in 2008, is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act. The purpose of this law was to make sure that “women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions,” are provided with “up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes.”
It was also intended to bring about “the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions.”
The breadth of the political spectrum that has felt the need to try to do something about all of this is illustrated by the main sponsors of this bill in the U.S. Senate: Democrat Edward M. Kennedy of Massachusetts and Republican Sam Brownback of Kansas.
Kennedy’s political reputation was that of a liberal who deeply believed in the power of governmental social programs. He was one of the main forces in the Senate behind the passage of the Americans with Disabilities Act of 1990. Brownback, meanwhile, was known as being a staunchly anti-abortion, devoutly religious, tax-cutting conservative. He served two terms in the Senate before becoming governor of Kansas. He later resigned as governor, in 2018, to serve in the first Trump Administration as U.S. Ambassador-at-Large for International Religious Freedom.
This bill passed with broad bipartisan support. But it hasn’t done much good because it was never funded. Since then, twenty-three states have enacted similar legislation. Here in Illinois, for example, we have the Down Syndrome Information and Awareness Act, which became effective on the first day of 2016. It says that the Illinois Department of Public Health “shall make available up-to-date, evidence-based written information about Down syndrome” to “persons who render prenatal care, postnatal care, or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome,” and “to any person who has received a positive test result from a test for Down syndrome.”
This law says that the information must be “reviewed by medical experts and state and national Down syndrome organizations,” and must include “contact information regarding first call programs and clearinghouses, national, state and local Down syndrome organizations, and other educational and support programs.”
The idea behind this and similar legislation in other states is to ensure that people who are considering an abortion because a test revealed that their child would have Down syndrome, or another disability, are making an informed decision. It works from the premise that a common point of communication breakdown occurs when pregnant people who are facing this dilemma discuss their options with doctors and other medical professionals. In their desire to find expert guidance, they mistakenly turn to the doctors or other medical professionals who have expertly guided them through their pregnancy thus far.
I believe this is a sound premise, because the expertise they seek is not something one learns in medical school. It’s more of an on-the-job-training type of thing. It comes from living with a disability, or living with someone who is living with a disability, and seeing that life is still full of possibilities for good things to happen. Living with a disability is not automatically a life of doom and gloom, as it may appear on the surface to a medical professional who hasn’t had any personal experience with disability. Laws like this want to expose people to this perspective who are pondering this crucial decision.
It’s not just legislative bodies that are trying to intervene, either. For example, a program called Down Syndrome Pregnancy by the University of Kentucky’s National Center for Prenatal and Postnatal Resources is designed to help “new parents see that their new baby with Down syndrome will have all the same wonderful qualities and possibilities as any new baby, so that the arrival of this new life is a celebration,” according to Cam Brasington, genetic counselor at Carolinas Medical Center in Charlotte, North Carolina.
Earlier this year, the results of a research survey by Brian Skotko, who directs the Down Syndrome Program at Massachusetts General Hospital, and several of his colleagues, were published in the American Journal of Medical Genetics. (Skotko’s sister has Down syndrome.) The research, titled “Prenatal Care of Parents Who Continued Pregnancies With Down Syndrome, 2003 to 2022,” notes that “parents of children with Down syndrome have historically reported poor experiences receiving a prenatal diagnosis. In a 2003 survey, mothers reported that their physicians pitied them, emphasized negative aspects of Down syndrome, and encouraged them to terminate the pregnancy.”
The purpose of this research was to see if this experience had improved at all for people who had brought babies with Down syndrome into the world between 2003 and 2022, via the distribution of a similar survey.
According to the study’s abstract, “parents continued to report dissatisfaction with their prenatal medical care . . . . Most parents reported dissatisfaction when providers conveyed pity or attempted to influence their decision-making about the pregnancy.”
The same group of researchers published a second, similar study in the same journal, designed to capture how people who had brought babies with Down syndrome into the world during that same period perceived the postnatal support that was available to them.
“Parents are increasingly likely to report that their providers pitied them, omitted positive aspects of [Down syndrome], and provided insufficient materials describing [Down syndrome],” researchers noted. Additionally, “only 24 percent described receiving adequate explanatory materials, and parents were 45 percent likelier to report that physicians discussed negative aspects of [Down syndrome] than positive aspects.”
Based on these findings, it seems that all of the efforts to enlighten doctors and other medical professionals about disability haven’t penetrated as much as they should have. I guess the best thing we can do about that is try even harder. Quite often, what a doctor has learned outside of medical school can be just as important as what they learned in medical school.