Rachel E. Adams is a professor of English and American studies at Columbia University and author the “Raising Henry: A Memoir of Motherhood, Disability, and Discovery.”
Before “I was born, the doctors told my mom that I’ll be Down syndrome and so the doctors asked her if she wanted to have an abortion of me,” says John, a star of the reality show “ Born This Way .” Cut to his mother, Joyce, who remembers doctors cautioning, “ ‘Don’t expect a lot. He will never be an asset to society. He will never be a productive citizen.’ Those are the words they tell you — you know, all negative. I just said, ‘No, John is gonna be my child. I will take care of him. He has Down syndrome, but it’s not gonna limit him.’ ” The John we see at age 28 is funny and kind. He has warm relationships with family and friends, and, like many other reality show stars, is pursuing a pipe dream — in his case, being a rap artist.
This is a familiar story for people with Down syndrome and their advocates. Where once experts advised parents to institutionalize babies born with Down syndrome, in the era of genetic testing, expecting mothers are frequently urged to abort. Even those who would otherwise identify as staunchly pro-life have seen Down syndrome as a possible justification for abortion.
But more recently, opponents of abortion have begun to use Down syndrome in their attempt to roll back women’s reproductive rights. Last month, the Missouri Senate debated a bill that would outlaw selective abortion — that is, termination of an otherwise wanted pregnancy on the basis of a Down syndrome diagnosis. This is not the first bill of its kind. In 2013, North Dakota passed a similar ban, and legislation is pending in Ohio and Indiana.
Proponents of these laws claim to be motivated by desire to fight prejudice against people with Down syndrome, rather than curtail women’s access to abortion. “Ending someone’s life simply because they are different or might have Down syndrome is discrimination. There is no other way to look at it,” said Republican Sen. David Sater, the Missouri bill’s sponsor.
Let me suggest another way. These laws trivialize the often-wrenching decision to terminate a pregnancy by suggesting that women are acting out of simple prejudice. But women decide to abort after a diagnosis of Down syndrome for many reasons. Doubtless some are motivated by misunderstanding or fear. Like Joyce, they may have received biased or inadequate information from their health-care providers or harbored their own preconceptions about what it means to live with the condition. But many others believe they lack the resources required for such a child to flourish. They may know that people with Down syndrome are living longer, healthier and more independently than ever, but they may also know they don’t have the time, money or social support necessary to raise a disabled child.
By representing these laws as a strike against discrimination, proponents also trivialize the efforts of self-advocates and their supporters to promote the well-being and inclusion of people with Down syndrome. The same legislatures that claim to protect the unborn have also slashed services to people living with disabilities. Ohio, which is debating the Right to Life Down Syndrome Non-Discrimination Act, defunded services for people with mental illness and developmental disabilities in its latest budget . And Missouri’s annual budget contained across-the-board cuts to services for seniors and people with disabilities. The very states that seek to bring more people with Down syndrome into the world are also reducing support for their health, development and overall quality of life.
As the parent of a child with Down syndrome, I, too, wish fewer women chose to abort in the wake of a prenatal diagnosis. I worry about the money pouring into development and marketing of noninvasive genetic tests for Down syndrome and other conditions that may soon become a routine aspect of prenatal care. And I’m dismayed that pregnant women who receive a diagnosis of Down syndrome often don’t get sound and impartial information about the condition. But we won’t end discrimination by limiting access to abortion, which will have the unwanted consequence of driving some women to risk their health by seeking illegal alternatives and other women to bear children they are not prepared to raise. Better to put resources into services and supports that improve the lives of people with Down syndrome and their families.
This morning my son Henry woke me before dawn, already dressed in his hat, parka and boots. He knew there was snow in the forecast and was ready to explore. Today, like most days in my life with Henry (and like most days in the lives of parents with any child under 10), will be both joyful and trying. My son loves reading, chocolate, Kermit the Frog and wrestling with his brother. He is a valued member of our family, not an arrow in the quiver of lawmakers seeking to pit supporters of disability rights against supporters of reproductive freedom.
Let’s recognize this legislation for what it is. Not a weapon against prejudice. And not a way to save lives. It is one more chapter in the conservative attempt to curtail women’s reproductive freedom. Those of us who genuinely want to end discrimination against people with Down syndrome should fight to preserve the services that allow them to thrive.