Two years ago, I went into labor seven weeks early. Less than five hours later, my second son was born surrounded by a packed room of medical providers. A few hours later, the attending neonatologist reentered and without much explanation said “your child appears to be healthy, but I am positive he has Down syndrome,” and then left me to be comforted by a midwife.
The experience of receiving an unexpected diagnosis is hard enough, let alone a diagnosis that carries great stigma. People stop saying congratulations and simply just say sorry.
Our diagnosis experience was not positive, but it pales in comparison to most families’ experience. You do not have to look hard on the internet to find numerous blog posts and compilations of diagnosis stories stating that a woman’s doctor encouraged her to terminate a pregnancy, or that a doctor reported negative or incorrect information about a child’s lifetime potential.
I chose to forgo prenatal screening, but testing for Down syndrome has been available since the 1970s. It was not until the past decade that a simple blood test has been freely available.
These noninvasive prenatal tests have become a contentious flashpoint in the abortion debate. Lawmakers in Texas and other states have filed bills, such House Bill 2434 and Senate Bill 1033, to stop fetal termination as a result of a Down syndrome diagnosis.
In response, more individuals are coming out publicly to state their belief that a majority of Americans would terminate if they received a prenatal diagnosis. While articles discussing the validity of a child’s existence are offensive, termination of fetuses with Down syndrome is widespread. In fact, in the United States, research suggests prenatal screening leads to a third fewer individuals with Down syndrome.
I am an ardent believer that there is an ethical case for having a child with Down syndrome, but the Texas (and other state) bills will not eradicate the bias held against Down syndrome. Instead, public and medical profession education is needed to demonstrate that individuals with Down syndrome are as worthy of life as everyone else.
There are numerous explanations for reluctance in bringing a child with Down syndrome into the world. The most reported explanation is a sense of loss of the child who will not meet the conventional expectations of a good life. This hesitancy is not surprising. Nonetheless, that pressure for perfection can be a strong motivation for parents to choose termination. I understand the emotional turmoil of discovering your child may be different from how you imagine, but the reality is life is not much different from how it would have been.
As a pro-choice woman, I find this contention within the abortion debate to be a blind spot for the progressive community. It is confusing that a group who pride themselves as supporting equal right protections do not find a way to balance choice, while also encouraging the entrance of more individuals with disabilities into our society.
Bills like these being discussed in Texas are going to continue to be filed throughout the United States. Why not change the narrative? Partner with the numerous organizations working to improve the delivery of unbiased diagnosis information, such as DSDN, Jack’s Basket and Hope Story. Participate in awareness campaigns to reduce the stigma related to Down syndrome. Meet constituents with Down syndrome and ask them how you can promote a more accessible, equitable society.
If Republican legislators are discussing concerns about discrimination toward specific disabilities, then Democrats should partner with those same legislators to improve early childhood intervention programs, work for the expansion of inclusive educational environments, and reform adult programs for individuals with severe disabilities to actually include them in meaningful activities (i.e., competitive employment), instead of warehousing them in day treatment or workshop programs.
If Democrats truly see themselves as the party that values diversity, then they will step up to the plate, find a way to shift the narrative and affirm the dignity of our children.
Deborah Cohen is a research assistant professor in the Steve Hicks School of Social Work and the Dell Medical School’s Department of Psychiatry at The University of Texas at Austin. She is also the mother of a 1-year-old who rocks an extra chromosome.
A version of this op-ed appeared in the Houston Chronicle, Austin American Statesman, Corpus Christi Caller Times and the Abilene Reporter News.
