Thirty years ago, when my mother was pregnant, an ultrasound revealed troubling abnormalities: the fetus’s organs were misarranged. This condition, she was told by her doctor, correlated with a wide variety of disabilities that could cause the baby to die at birth. He told my mother that she could seek an abortion. She wanted her to know her options.
My parents had good health insurance, a steady income and a strong support system. They chose to proceed with the pregnancy. A few months later, I was born to a crowd of doctors waiting to assess and treat my condition. I had my first of many major surgeries at eight weeks old. My parents went to sleep every night praying I’d see another birthday.
Two liver transplants and countless other lifesaving interventions later, I’m now a 29-year-old woman sitting squarely in my own reproductive window. But with the recent Supreme Court decision overturning the constitutional right to legal abortion, it’s clear that I will not have the same freedom to make choices about my own body that my mother had.
Despite the fact that anti-abortion advocates would champion my disabled “life” in my mom’s womb, the laws they’ve levied across the country now put my life and that of other disabled and chronically ill people in danger by potentially forcing us to carry a pregnancy to term even in the face of serious health consequences.
Those of us who are disabled and pro-choice, as I am, often find ourselves confronted with confusion and contradiction. This is a hard conversation. Arguing for choice isn’t arguing for the termination of disabled fetuses; if it were, I wouldn’t be pro-choice.
Anti-abortion advocates like to use disabled fetuses as pawns to support their politics. To be honest, sometimes it works on me. I feel a lot of fury that the value of disabled people is often overlooked or ignored. But I know this inner conflict is manufactured and sold to me, not of me.
By invoking a story about valuing disability, anti-abortion advocates can connect abortion to the dark practice of eugenics, or the systematic removal of unsavory traits in a population to achieve genetic supremacy. If they can liken ending a pregnancy for a fetal abnormality to genocide, they can liken their advocacy to protecting disabled lives. They are forgetting, however, that pregnancy can endanger disabled people. Removing abortion access is not protecting our lives; it is putting them in danger.
Growing up in a conservative town, I became familiar with this story line: “No one should have an abortion, even if there is something wrong with their baby,” my high school friend would say. “Kendall, you’re a miracle baby. Surely, you are happy you are alive.” I was already firmly pro-choice then, but my disability was used as the evidence in her argument, the gotcha in our debate.
What my friend didn’t understand was that disabled fetuses grow up to be disabled people with their own reproductive needs. In some cases, these needs include access to abortion. It is key to our health care — just as integral to our well-being as mobility aids, surgeries and medications.
Take my case: Pregnancy in organ transplant recipients like me is a high-risk endeavor. Should I choose to become pregnant one day, my pregnancy will need to be carefully considered and closely monitored. Many transplant recipients and a slew of others living with chronic health conditions are on medications that have irreversible and negative effects on a fetus and in the event of an unplanned pregnancy, they would need access to abortion. Pregnancy can also threaten our transplanted organs.
Even in anti-abortion states where abortion is still legal in the case of a life-threatening situation, what constitutes life-threatening is narrow. Cancer likely isn’t threatening enough to warrant terminating a pregnancy. Bleeding out might be, but doctors and hospitals will have to make that call in real time by consulting their lawyers. Then there’s the cruel truth disabled people know better than most: Your health can be harmed in life-altering ways, without causing what doctors call “imminent death.”
Disabled people have long been sexually infantilized, opening the door for paternalism to run roughshod over our bodies and lives. We are more than three times more likely to be victims of sexual violence and rape than our nondisabled peers. The same movement that has fought to block access to abortion throughout history has sought to control and brutalize disabled pregnant people and parents by engaging in state-sanctioned eugenics.
In the 1927 case Buck v. Bell, the Supreme Court gave states permission to sterilize those held in public institutions. At the center of the case was a woman who had been raped and became pregnant. She was committed to an institution where she was forced to give up her baby and then she became the central focus of a burgeoning eugenics movement that sought to sterilize disability, poverty and color out of American society.
Control over the reproduction of disabled people still exists today. Justice Brett Kavanaugh, in a 2007 opinion for the U.S. Court of Appeals for the D.C. Circuit, affirmed the government’s interest in forcing two disabled people to have abortions saying that “accepting the wishes of patients who lack (and have always lacked) the mental capacity to make medical decisions does not make logical sense and would cause erroneous medical decisions.” In June, he made a total moral about-face as one of the five Supreme Court justices to overturn our individual liberty by withdrawing our constitutional right to an abortion.
The loss of access to legal abortion has entirely altered the process of deciding whether to have children. It has magnified both the danger of getting pregnant, and my fear. It is deeply ironic that the people who swore they were fighting for my right to exist now threaten my right to thrive and survive. The hypocrisy is enraging.
These actions are not about respecting the sanctity of our lives. They are about controlling them. What chronically ill and disabled people need is autonomy to make the health care choices right for them. It’s what we all deserve.
Kendall Ciesemier is a writer and producer and the host of the ACLU podcast “At Liberty.” She is writing as an individual, not for the ACLU. This article originally appeared in The New York Times.
