Abortion: The weight of choice

This week’s column is a nuanced discussion of abortion. Is that even possible? Let’s find out.

“In the United States this information void has yielded a number of unexamined assumptions, including the belief that the quality and enjoyment of life for disabled people is necessarily inferior, that raising a child with a disability is a wholly undesirable experience, that selective abortion will save mothers from the burdens of raising disabled children, and that ultimately we as a society have the means and the right to decide who is better off not being born.” — Marsha Saxton

Because of where I grew up and who my friends were, I was reflexively pro-choice. I didn’t think too deeply about it. Choice was good. Who could be against freedom?

In high school, a close friend of mine had an abortion; another close friend chose to give her baby up for adoption. Despite that, I don’t remember ever thinking too deeply about the issue. How could I? How can anyone know what it’s like to be at that crossroads until they are? 

The first time I was able to think about abortion seriously was the first and only time I’ve been pregnant — with the twins who are today 11 years old. 

I found out I was having twins at 20 weeks — five months pregnant. By today’s standards, that’s pretty late. But it’s not nearly as late the women who, in the days before ultrasounds, found out they were having twins in the labor and delivery room. 

My generation of mothers — for the first time in human history — can know reams of information about their babies before their bellies even start to swell. 

Except… we can know only certain things. 

We can know how much they deviate from a cultural physical norm or a medical ideal. We can know if they have a heart defect or an extra chromosome or a missing limb. 

What we can’t know is if they have a deep belly laugh that always makes us smile. We can’t know if they have noses just like their dad’s. We can’t know if they love David Guetta’s music so much that they vibrate with joy. We can’t know if they share pickled asparagus with us because they like the crunchy stems better and we like the soft tips better. 

At the moment of deciding whether or not to keep them, we don’t get to know any of the things that matter most. 

*

For me, personally, preserving my fetuses’ lives instantly became something I was willing to sacrifice everything for. After the 20-week ultrasound, the doctors gave me 2 to 1 odds that they would survive and damn it I was going to “win” that bet.

I felt very pregnant at 20 weeks. I could feel their kicks and see their perfect little heads on the ultrasound. So it was surprising to me, later, when I learned that my state did not have a time limit on abortion. No doctor officially presented that to me as an option, but it was an option. Looking back, there were a couple of conversations that probably were heading that direction if I had thought to ask.

Who gets abortions? That answer also surprised me when I looked into it for what became an award-winning article. The archetypal pregnant-teen-fallen-on-hard-times happens, but it’s not the most common scenario. More than half of abortions are in women who have at least one kid already, most are in their 20s, and about a fifth are married. As the Centers for Disease Control says, “Unintended pregnancy is a major contributor to induced abortion,” — but it is not the only reason. 

Now that I live in Special Needs World, I see how abortion is yet another of the most difficult problems in our society that medical mothers have a unique and overwhelming responsibility to navigate.  

Before, I had never considered how many fetuses are aborted due to a belief that a disabled life is not worth living.

An article last year in The Atlantic made this clear. Ever since prenatal testing for Down syndrome was offered universally in Denmark, nearly all Danish moms chose to do it and, of those whose fetuses tested positive, 95 percent chose to abort. In 2019, only seven sets of Danish parents chose to continue a pregnancy when they learned the baby would have Down syndrome — and that in a country with some of the best disability supports in the world.

“It is ironic that just when disabled citizens have achieved so much, the new reproductive and genetic technologies are promising to eliminate births of disabled children—children with Down’s syndrome, spina bifida, muscular dystrophy, sickle cell anemia, and hundreds of other conditions,” reads this fascinating report by disability researcher Marsha Saxton. “The American public has apparently accepted these screening technologies based on the ‘commonsense’ assumptions that prenatal screening and selective abortion can potentially reduce the incidence of disease and disability and thus improve the quality of life.”

*

The flip side of these reproductive health debates is that they influence social attitudes about medical motherhood: It can now be seen as a choice. 

Women can be blamed for their lot in life, their pain dismissed, because they “chose” to have kids, or they “chose” to accept risks of fertility treatments, or they “chose” not to test, or they “chose” not to abort. Rather than an unexpected outcome that society has an obligation to assist with — like unemployment or a flood or a disability later in life — women with disabled babies somehow deserve their hardships. This is a particularly tragic attitude because supporting mother-baby dyads early in life pays enormous returns. With genuine support, mother and child gain more capacity for self-reliance and lead fuller lives in the long term.

The systems can change for the better. And they must. Despite prenatal testing, there will always be disabled children, and there will always be mothers who care for them.

*

When I was fighting for my twins’ lives, I was profoundly ignorant about the incidence and reality of disabled life. I thought in black-and-white: either they would survive or they wouldn’t.

I also thought I was open-minded and progressive. I treated people equally. But… I also thought the r-word was funny. I looked with pity on caregivers. I shied away from wheelchair users or the intellectually disabled. I was ableist, and I didn’t even know that was a word.

I strongly believe we need more genuinely inclusive schools, workplaces and communities. The more exposure a person has to disabled people, the less the “disabled” part matters and the more the “people” part does.

I know that there are lots of different scenarios that could lead a woman to an abortion. I know mothers who love their disabled children dearly but do not want another. I know mothers who are disabled themselves and do not want to pass on their disability. There are a lot of ways that this is a personal and private decision best left to the people involved.

However, I will note that if someone had given me a list of my children’s current diagnoses when I was pregnant, I probably would have made a very difficult, but very different, choice.

It would have been the wrong choice.


Medical Motherhood’s news roundup

• From Pittsburg Post-Gazette: Ablegamers Charity makes video games accessible to those with disabilities

His mother was originally told, following his diagnosis, that he only had a few months to live.

But that’s not what happened.

Mr. Spohn is not only alive, but he has become an important fixture in video game culture as the chief operating officer of AbleGamers, a nonprofit with a mission to combat social isolation and improve the quality of life for individuals with disabilities through making video games accessible for all.

• From The New York Times: Least Vaccinated States Lead Spike in Children’s Cases, Leaving Some Hospitals Stretched

Public health officials and experts also caution that even small increases in the number of pediatric Covid-19 patients can put a major strain on pediatric hospitals and I.C.U.s, many of which are already overstretched with nursing shortages and an unusual summer surge of respiratory syncytial virus or R.S.V.

“The average pediatric I.C.U. in the U.S. has 12 beds,” said Dr. Christopher Carroll, a pediatric intensivist at Connecticut Children’s Medical Center. “In a system that small, even a few patients can quickly overrun the capacity. And there are fewer specialty trained pediatric clinicians to pick up the slack.”

• From The New York Times Opinion: Children With Disabilities Need Sex Ed Too

“Currently, only three states in the country explicitly include special ed students in their sex-ed requirements. Six other states provide optional resources adapted for more accessible sex-ed curriculums. Thirty-six states fail to mention students with special needs at all, meaning the issue is left up to the individual school districts that, more often than not, punt the ball until parents demand it and/or a crisis arises, e.g., two students are found in a bathroom stall or a nonverbal girl is discovered to be pregnant.”


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