As the mother of a nine-year-old with Down syndrome, I am usually eager to support legislative efforts to protect and honor individuals with Down syndrome. In the midst of Down Syndrome Awareness Month, I want more and more people to recognize the vibrant lives led by people with Down syndrome. I believe in the inherent value of every human life, and I want to live in a culture where women receive the support they need to continue unexpected pregnancies and pregnancies with unexpected prenatal diagnoses.
But I don’t support the Ohio bill that would ban abortion on the basis of a prenatal diagnosis of Down syndrome.
Though accurate statistics are hard to come by, many women who receive a prenatal diagnosis of Down syndrome choose abortion. Many doctors still provide outdated and biased information when they give this diagnosis, sometimes overstating health risks and social stigma in a way that plays into parents’ fears. Companies that offer early, noninvasive prenatal screening tests often use misleading marketing materials. Although these companies say their tests are 99 to 100 percent accurate, independent investigations demonstrate the inaccuracy of their claims.
I know firsthand the beauty and delight (and frustration and heartache) of life with Down syndrome. Our daughter Penny takes thyroid medication. She has trouble controlling her impulses at school. She has trouble telling time. She also glows with pride after she plays a new song on the piano, and bubbles over when she hears a friend is coming to visit. She skips with excitement when she sees a bookstore or a library, home to thousands of her favorite objects: chapter books. Her life is glorious, messy, and, in her own words, “great.” When she was first born, I didn’t believe happiness, hope, and possibility would define us as a family, but they do.
So I know what it’s like to receive a prenatal diagnosis of Down syndrome. I know the fear and the sadness and the confusion and anger and guilt. I know the desire to run away from it all. I desperately want to offer my hand to the women who stand in that place, assure them that it will work out, that their child will be safe and loved.
But I don’t think bills like Ohio’s will achieve the goal of welcoming more children with Down syndrome into the world. This bill ostensibly protects babies with Down syndrome, because it outlaws abortion based upon a prenatal diagnosis. In this way, this bill recognizes a troubling reality—our cultural bias against children and adults with intellectual disabilities. But such a law could potentially intensify that bias. This measure stands a chance of increasing the misinformation about Down syndrome and could even worsen the rate of abortion of babies with the condition. (Existing laws on selective abortion, such a similar ban in North Dakota, are difficult to enforce.)
First, doctors agree to abide by their field’s standard of care. In the case of Down syndrome and other genetic abnormalities, that includes presenting “all reproductive options.” If it is illegal to present abortion as an option in the case of Down syndrome, these doctors find themselves caught between their professional guidelines and a state law. They could easily offer no information rather than try to navigate the two conflicting mandates, especially when a new law requiring clinicians to hand out information about Down syndrome has received no funding.
Second, women with a prenatal diagnosis of Down syndrome need safe and open conversations with medical providers. These laws run the risk of stifling women’s questions. In our culture, a diagnosis of Down syndrome often brings fear. Women need freedom to ask questions so that their fears can be ameliorated and they can discover the truth about Down syndrome. When the law doesn’t offer women a chance to talk through their fears and consider their options, some will decide to get an abortion based on instinctual fears and incomplete knowledge.
In recent years, a coalition of parents, genetic counselors, Down syndrome advocates, adults with Down syndrome, doctors, and other professionals has come together in what has come to be known as the “pro-information” movement. This movement attempts to sidestep the politics that divide pro-life from pro-choice. The “pro-information” approach acknowledges that, in a country where abortion is legal, some women will choose abortion in the face of a prenatal diagnosis, but that no woman should choose abortion based on fear, shame, outdated information, or lack of support. All women should receive up-to-date, balanced information about the reality of their children’s condition. And the pro-information movement affirms the potential for good, whole, fulfilling lives for people with Down syndrome and their families.
In 2008, Congress passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act. It called for accurate and up-to-date information on the heels of a prenatal diagnosis of Down syndrome and other genetic conditions. Senators Ted Kennedy (a Democrat from Massachusetts) and Sam Brownback (a Republican from Kansas) led the effort as co-sponsors, offering hope that our government could work across the aisle on this issue. But Congress never funded the law, the law never mandated the provision of the information, and Health and Human Services has not provided grants. People still do not have access to the information the act required.
Meanwhile, other groups have worked to provide doctors and patients a fuller picture of life with Down syndrome and other genetic conditions. The National Center for Prenatal and Postnatal Resources created booklets with input from major medical and disability organizations. They include information about abortion as well as adoption and continuing the pregnancy. These materials emphasize the real lives of families with children with Down syndrome—real lives that include more visits to doctors and specialists than the typical child, but also real lives that include laughter and love, just like a typical child.
Presumably, lawmakers who outlaw abortion due to a prenatal diagnosis want to support people with Down syndrome. The best way to do this is through changing the culture of bias toward people with disabilities, writing and funding legislation to provide accurate and up-to-date information to doctors and their patients, and exposing the misleading claims made through advertisements for prenatal screening and diagnostic tests.
Information will not save all babies with Down syndrome. But it will provide women with a chance to overturn outdated assumptions and instead imagine a good future for their children and their families. It can change the implicit bias from doctors who present diagnoses based upon memories from medical school rather than using contemporary statistics and images. Information can offer a way for women to choose life.