In the abortion debate, Down syndrome has become a rallying cry of sorts among both antiabortion and abortion rights camps. It’s a debate that will continue to rage, as recent legislation has passed in North Dakota, Ohio, Indiana and Louisiana banning abortion for a prenatal diagnosis of Down syndrome. The condition, in which a fetus develops from fertilization with an extra copy of the 21st chromosome, is the most common chromosomal abnormality, occurring once in every 700 live births. And it’s something I’ve learned a lot about since the prenatal diagnosis of my third child, who is now almost 3 years old.
This month The Washington Post published a column in response to this recent legislation, defending a woman’s the right to terminate a pregnancy with the Down syndrome diagnosis, a choice the author said she would have made had she faced the decision. The response to her piece was as emotional and complicated as one might imagine. We in the Down syndrome community are already exhausted by this public conversation, which feels very personal and painful, and surely any parent whose child suddenly became an “issue” could empathize. But it’s not the abortion component that fatigues us most, though this conversation often gets stuck in the “pro-life” or “pro-choice” divide.
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Today, as we celebrate World Down Syndrome Day, many in the DS community would love to see this debate move away from the frenzied desperation of abortion discourse and toward a broader, more holistic dialogue. It starts by searching for our soul and the soul of our society. We live in a culture that holds contempt for weakness, and our derision masquerades as progress.
Despite the fact that people with Down syndrome are living longer, going to college and achieving more than ever before, a culture that defines human worth by what a person can contribute, produce or enjoy is always going to leave people behind.
It would do us good to begin to admit our collective failure to protect the weakest among us. And repentance begins with listening to the voices at the center of this debate. When we step into conversation with those on the margins of society, their stories will lead us to curiosity, empathy and a more vibrant consciousness.
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What makes it into opinion columns only continues to feed an already false perception of intellectual differences and value. Human beings with Down syndrome are acknowledged as cute, or loved by their families, or capable of living a fulfilling life. None of these portrayals is wrong, but if left alone, a person with Down syndrome begins to look like a caricature, worthy only for her cuteness or for the shallow positive feelings her life can provide those of us who are neurotypical. But deeming a life valuable because a person is happy or cute isn’t merely shallow. It’s dangerous. It should disturb us deeply when anyone fails to acknowledge our full humanity or makes a claim to know who among us is worthy of life — and who isn’t.
My friend Jeff, who is LGBTQ, recently shared with me his fear that one day we might discover a genetic code and offer prenatal testing for sexual orientation. What would be our reaction if the possibility that a fetus would identify as LGBTQ became a common reason for the termination of pregnancies? Imagine our righteous anger on behalf of an entire group of people who have every right to love and feel and experience the world and bless it with their existence.
Perhaps one day we will have the technology to test for every genetic variant our human bodies can pass along to our offspring. Perhaps we’ll test for autism, for artistic skill, for physical attraction. And when we can, where will we draw the line? Who among us doesn’t have traits that could be seen by some as undesirable? The question then becomes, what sort of human is desirable enough, and what sort isn’t?
Disability continues to be misunderstood, and the debate over abortion rights brings this contempt to the surface. The truth is this: We like to think that we are advanced, socially evolved people. Yet our society remains deeply afraid of difference, and often we mistake difference for deficiency.
Until we take time to know, listen to and value those who experience the world differently than we do, we will fail to be fully human. How a society chooses to embrace and learn from the marginalized among us says a great deal about who we are. I like to think we’re capable of more.
Micha Boyett is the author of “Found: A Story of Questions, Grace, and Everyday Prayer” and a co-host of The Lucky Few podcast, which shares stories and advocates for people with Down syndrome. She lives in San Francisco with her husband and three boys.