I made the choice to continue a high-risk pregnancy, but I honor the choice of any pregnant person who opts to terminate given the same set of facts. I trust them to understand their financial ability to support a child with major medical care needs. I trust them to decide whether they’re emotionally and spiritually ready to handle a pregnancy that may still result in the child’s death even with the best interventions. I trust them to judge whether their partners will be supportive during a complex pregnancy — domestic violence homicide is the leading cause of death during pregnancy, and abortion can be a lifesaving way to escape an abusive partner. I trust those who are pregnant to take care of their own health as they make these decisions.
What I don’t like is seeing ableism — that is, prejudice against adults and children with disabilities — rolled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade. So many of the stories about the abortion bans that states are enacting describe abortions as necessary for pregnancies in which there has been a diagnosis of a fetal health problem. This suggests that avoidance of future disability for the child is the correct and rational decision. But the issue is more complicated than that. We can discuss abortion rights while also advocating for disability rights by centering bodily autonomy.
The intersection of disability rights and abortion rights is complex, but much of the discourse around the topic has centered on the perspective of parents of potentially disabled babies over the lived experience of disabled people. Ongoing access to safe and legal abortion is a critical issue, but reproductive health equity requires that we look beyond this single issue and toward the need for a system of care that values and supports the lives of children and youth, including those with special health care needs.
Unborn children are a convenient group of people to advocate for, since they are inherently unable to advocate for themselves. That holds especially true for unborn children diagnosed with a serious disability. With timely prenatal diagnosis, modern medicine can save the lives of children who previously would have died at birth or shortly after. But access to this level of care is still marked by major disparities. Across the board, the states that have moved to impose severe restrictions on abortion access are the same states where children with major health care needs can’t get the care they require.
I learned that my son would have serious and medically intensive disabilities at a routine 18-week ultrasound. As I learned more about his medical conditions and the interventions that would be required to make sure he could breathe after birth, I had to read between the lines of what my husband and I were being told by our local doctors. The level of care that my son needed to survive was available — it just wasn’t available where we lived. My local obstetrician was upfront that she didn’t perform abortions unless the situation fit into her moral framework (she didn’t ask about mine). But, at the same time, my doctor could not provide the kind of care my son needed to survive after birth and declined to even refer me to another provider. Her beliefs about justified and unjustified abortions provided her with moral comfort but didn’t actually provide me with the kind of care that would make it possible for my son to live.
We live in California’s Central San Joaquin Valley, a region with a persistent lack of access to specialty medical care, including the kind of care that is necessary to support infants with major medical needs. I was on my own to get second opinions based on the limited information we got from our local doctors. I was on my own to figure out how to get to one of the big children’s hospitals in the Bay Area. I based my decision on whether to continue or terminate the pregnancy based on whether my son was going to have a fighting chance at life — and the sad truth of that was that chance depended on our family having the financial ability to uproot everything and travel 200 miles from home for all of his care. We knew that he might be able to live if we could get to a better-equipped hospital, and we knew that he would die if he was born in our hometown.
A nurse at my obstetrician’s office put her hand on my pregnant belly and prayed out loud that I would find the strength to fight against forces that would tell me to get an abortion. I didn’t give her permission to do that, and I certainly didn’t ask her to. Her intervention — which made her feel good in the moment — permanently damaged my willingness to talk about my health or decision-making process with that office.
In contrast, at the university hospital where my son still receives his specialty care, abortion was presented without judgement as an option alongside a comprehensive plan of what they could do to keep him alive after birth. When I was presented with abortion as part of comprehensive reproductive health, I felt like I was being respected as a person. But earlier, when my hometown medical care team let their bias take the lead, as a patient I felt trapped.
My son is now eleven, but instead of his ventilator being a scary thing in the intensive care unit, it’s just a normal part of his bedtime routine. He brushes his teeth, puts on his pajamas, and hooks up his ventilator while he reads comic books in bed. At the time I was making decisions about my pregnancy, I had internalized ableism. Because of institutional bias and lack of community living support for disabled adults, I had never seen anyone with disabilities like my son’s out in the community. I thought about his life as being a linear path from sickness to health. I was wrong about that — children with disabilities grow up into adults with disabilities, and it’s our job to build a world that works for them.
The care that pregnant people receive needs to honor their bodily autonomy. At the same time, the availability of abortion doesn’t diminish the lives of children who have special health care needs or of adults with disabilities. California can continue providing safe and legal access to abortion while building a wraparound system of care that values the lives and rights of people with disabilities.
Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program. She is active in advocating for disability rights and home- and community-based services.