When I saw the email asking me to write about the recent Ohio law that makes performing an abortion after the prenatal diagnosis of Down syndrome a felony, signed last week by Governor Kasich, I winced. While I have a lot to say about disability and abortion, I have engaged in enough discussions about this topic to know that what I have to say risks making me enemies of just about everyone.
I am also a mother who is grateful that my child’s genetic mutations were not identified prenatally.
Let me be clear from the outset: In my opinion, the Ohio law in question — which takes effect in March and will punish doctors with hefty fines, loss of their medical license, and jail time for performing an abortion following a diagnosis of Down syndrome — is a stupendously misguided bill. It has little to do with substantively protecting the lives of people with Down syndrome. Instead it has everything to do with using people with Down syndrome as a tool to achieve a political goal. At the same time, I also believe that this bill gestures toward a serious ethical question that our society cannot afford to ignore: Namely, how we will allow our ever-expanding genetic science to define us as humans with respect to people with disabilities.
If you are honest about the issue, there are no easy answers or positions. We all feel safest remaining in our partisan trenches, but this issue is bigger than politics. While so much of our country appears to see it as black or white, I see only grey. I know it is not popular to sit yourself down in the middle ground of one of the most polarizing issues of our day. Not many people seem comfortable with the notion that on this issue absolutes don’t exist, only best efforts and ethical struggle. For me, though? I live in this in-between. I am a progressive, a feminist, a strong believer in women’s reproductive freedom.
I am also a mother who is grateful that my child’s genetic mutations were not identified prenatally. I am a disability rights advocate who finds herself continually disturbed by the callus nature with which the lives of those with disabilities are treated by both the right and left in this country — while both proclaim to champion them.
Until I was pregnant with my daughter, Esmé, I was unflinchingly pro-choice. Raised in a family and community that were, for the most part, very liberal, just about everyone I spent much time with was pro-choice as well. I was grateful that as a woman I would have safe and legal options to terminate a pregnancy, should I need them. I was also grateful that I had never needed to make such a difficult choice.
In 2010, at 28 years old, I became pregnant with a baby I very much wanted — a baby with whom I felt deeply bonded, almost immediately. It never occurred to me that my baby would be anything other than healthy and able-bodied. However, on the date of my 20-week ultrasound, I experienced whiplash. One moment I was relishing in the joyful pronouncement of, “You’re having a little girl!” and the next I was sitting across from a stone-faced doctor declaring that something was wrong with the “fetus.” I’ll never forget how quickly my baby went from being a little girl, to a fetus, devoid of the personhood just bestowed upon her in the ultrasound room. The doctor explained that “the fetus” showed signs of major genetic conditions, most likely, the fatal conditions Trisomy 13 or Trisomy 18, but possibly Trisomy 21 (Down syndrome).
As it turns out my daughter has none of those genetic disorders. She has something far more implausible — four separate, small genetic mutations that cause significant developmental and medical challenges. These mutations were not picked up on our amniocentesis in 2010. They would be unlikely to be detected in 2018 with anything but the most precise genetic testing. But, I know the standardization of such precise testing isn’t necessarily far off.
My personal experience has uncovered a blind spot in my previous ethical understanding of the issue.
You see, I find it hard to talk about disability and abortion without talking about my daughter. My concerns about prenatal testing, disability, and abortion are not simply a matter of the complexity of my personal experience. However, my personal experience has uncovered a blind spot in my previous ethical understanding of the issue. I used to believe that my right to choose what to do with my body was more important any other person’s opinion on the matter. In many ways, I still believe that. However, I also understand that our genetic science is moving faster than our ability to fully comprehend the ethical, cultural, and social implications of said science.
It is a concern that leaves me wondering whether there might be certain things we just shouldn’t know about our unborn fetuses.
This isn’t an issue that is resolved by the flippant and oft-repeated “if you don’t believe in abortion, don’t have one.” It is a concern that digs into what it means to be human, which lives are worth defending, and what kinds of promises can (and should) be made to those wishing to become parents. It is a concern that asks us to consider the distinction between mercy and selfishness. It is a concern that leaves me wondering whether there might be certain things we just shouldn’t know about our unborn fetuses. This might sound extreme, but it is not without an important parallel.
Thirty-six countries in the world have laws limiting sex-selection. These laws respond to cultural preferences for the birth of boys, such as that which has skewed birthrates in countries like China. A number of countries with progressive abortion laws, including Canada, the United Kingdom, France, and Germany, have bans on sex-selective abortion and often do not allow the sex of a fetus to be revealed until late-term pregnancy. Such laws do limit the individual rights of pregnant women; however, they exist in order to provide protection to a group — women — who are subject to systematic discrimination, as well as to safeguard the good of the larger society.
To me it makes perfect sense to discuss the terms upon which genetic information about unborn fetuses is available to expectant parents. I do not claim to know where the lines might reasonably be drawn. These conversations are difficult, but they are necessary before we march headlong into the science just because it is there.
Where it gets murkier is in picking apart the response to this bill and being honest about the dark reality that it responds to: that people with Down syndrome are under threat of being screened out of existence during prenatal testing.
To return to matter of the Ohio bill, it is rather easy for me to pick apart any person’s logic who would defend this law while simultaneously supporting political positions that fail to support the lives of people with disabilities — including the quality of their health, education, well-being, and civil rights. Other writers have covered this ground, drawing attention to Ohio’s Senate Bill 216 and Governor Kasich’s support for Betsy DeVos as Secretary of Education, despite the adverse effects both have on special education.
Furthermore, the Ohio bill includes no provisions at all to provide support or education to the families of the children born as a result of the ban. And there are no funding changes to the programs supporting people with disabilities. In fact, the language of the bill is almost entirely focused on tracking data about abortions performed. It is a bill about abortion, not a bill about Down syndrome (not to mention any other disorder that can be diagnosed prenatally).
Where it gets murkier is in picking apart the response to this bill and being honest about the dark reality that it responds to: that people with Down syndrome are under threat of being screened out of existence during prenatal testing. A lot of the discussions of this issue work to de-humanize people with Down syndrome, calling this, for example, a "Down syndrome abortion" law — as if the syndrome might somehow be separated from the person with it — and in the use pejorative language discussing “Down’s babies” and people with “Down’s.” However, no matter how we linguistically dance around it, the fact remains that countries like Iceland and Finland have brought the births of people with Down syndrome to almost zero. When you look at these figures, together with the rising percentages of abortions of babies diagnosed with Down syndrome across the developed world, it is hard to talk about this issue as anything other than eradication, of eugenics.
How do you measure what is lost in such a society that does such a thing? It is not just a loss of the people who do not get a chance at a life because their lives are deemed less valuable, their genetics unworthy. It is also a matter of the loss of the many gifts and accomplishments of people with Down syndrome. It is a loss of the kinds of goodness and capacity for understanding that can be gained when a culture is more accommodating of difference.
And it begs the question: if we can tolerate the logic of eradicating one group of people, what other groups come next? Those with Autism? With genetic markers for future disease? With mental health conditions? Where and when is the line drawn? Who draws it? And what is lost to the chasm on the other side?
I am not alone in asking these questions, of course. Science writer James Kozubek discusses the ethics of genetic science, how genetic selection might alter human evolution, and the repercussions of eradicating genetic variation that can be seen as “weaknesses.” In an article for TIME, " How Gene Editing Could Ruin Human Evolution," he argues, “Evolution works at the margins, and it does so through trade-offs: Often, you don’t get an advantage without risking a disadvantage. This is not trivial.”
And beyond what is lost to society, or indeed human evolution, I cannot help but come back to the deeply personal — my daughter. Often, I have heard people argue for prenatal testing and abortion as a matter of compassion, for not wanting people to have to live lives like my daughter lives. Even, devastatingly, the Dalai Llama has expressed approval of abortion in the case of intellectual disability.
I do not know what challenges lay ahead, but I know, so far, even in the darkest moments of her life, she would choose her life over no life at all.
It is undeniably true that my daughter has a life that has been filled with more pain, fear, and frustration than most seven-year-olds experience (arguably more than many 70-year-olds). However, her life has also been filled with far more joy, love, and magic than any other life I have ever known. Esmé’s life is not measured against any other person — not in milestones or abilities or plans for the distant future. It is a life lived in the present, filled with Muppets, giggles, and human connection. Hers is also a life filled with giving. She has brought more to the lives of those around her than most people can claim. The world is a far better place with her in it.
I do not know how long her life will be. I do not know what challenges lay ahead, but I know, so far, even in the darkest moments of her life, she would choose her life over no life at all. I know this deeply in my heart, but also because even on the heels of a brutal seizure, she would come to and smile at me. Even as her heart stopped beating when she was three months old, she fought back, defying the odds to remain alive. I know because even in the heights of her sickness she finds a way to learn, connect, and grow in ways that put most adults to shame.
I know that I will always feel grateful and honored to be Esmé’s mother, just as she is.
I do not believe my daughter's mutations are an accident. I do not believe they are a gift. I believe they are part of who she is. And I know that I will always feel grateful and honored to be Esmé’s mother, just as she is.
As a result of my own political leanings, I expected to see the right fall short on measures to protect my daughter in the ways they have in this Ohio bill and countless others — choosing to defend her right to be born, but not the healthcare, educational, and social systems that provide her with a life worthy of her. However, time and time again, I have also been disappointed by those with whom I share a political background who refuse to see, and sometimes even discuss, where pro-choice politics may need to be more nuanced, more compassionate, where they overlap with disability rights.
In fact, one of the most stunning and disappointing moments in a year filled with stunning and disappointing political moments occurred in a huge crowd of people at the Women’s March in my state capital. As I stood there with my daughter, our disability rights sign displayed proudly, we listened to the CEO of the local Planned Parenthood chapter list the groups that they stood behind, the groups of people they would work to protect. It was an impressively comprehensive list. And nowhere to be found where people with disabilities.
I'd like to say I was surprised, but I wasn't.
I believe there are answers for how we must grow and adapt to be found in our genetics, in lives like my daughter's.
Genetic mutations, genetic difference, is what has allowed us to become more resilient as a species. It is at the root of how we grow and adapt. This is a time when our country is increasingly being dominated by whomever is deemed stronger, louder, more able to exploit the weaknesses of others for their own gain. This leaves many of us wondering how we got here, and what we can do to find another path — not just politically, but as humans. I believe there are answers for how we must grow and adapt to be found in our genetics, in lives like my daughter's. Understanding the value of Esmé's life requires that we step aside from what drives all too much of our modern lives: the goals of perceived strength, flawlessness, independence, and productivity. Instead, what we need, and what individuals like Esmé require of us, is a turn toward compassion, selflessness, joy, and determination in the face of struggle.
This is not what we should be excising from our lives. It is what we need to embrace now, more than ever. And as a society, whether we do — and how we do it — will most certainly tell us all we need to know about our humanity.