Global Crisis

UPDATE: I am leaving the essay below as is. I am increasingly persuaded by my smart interlocutors that the correct response to these kinds of essays is to offer empathy to the mother and to tell one's own story as best one can in one's own spaces. Thanks for all the feedback.

Websites and newspapers like publishing Down syndrome and other disability abortion narratives. They like them almost as much as Heroic Mother/Father/Child narratives. The pattern is pretty clear - a mother says that she got her diagnosis, was deeply upset, terminated, and remains upset about it but pretty sure she did the right thing.

Let's get some ground rules out. I am pro-information, pro-choice, and anti-eugenics. I believe a woman has the right to have an abortion under any circumstances, for any reason, at any time. I want doctors and counselors to have access to the best and most current information, to offer that information to women, but its her choice whether she listens, whether she takes it into account, and what she does with her body.

I am, though, concerned about our ongoing and intensifying eugenic age. I frequently say that what's going on with prenatal testing is just a test run for the future of human procreation, and it's a test we're largely failing. Gene editing is coming, and as Wired published, we need to figure out the ethics of that now! I believe our future is one in which disability codes increasingly for poverty and lack of access to modern medicine. I call it the "Gattaca scenario," and it doesn't make me happy.

These two above paragraphs require me to walk a very, very, fine line, and I make mistakes trying to do so all the time. When I read disability selection termination narratives, I always run the risk of rendering judgment for a woman making a choice I don't like, and that plays right into the hands of the anti-choice movement.

That said, the decision to write a public essay about one's abortion is different than the decision to have an abortion. I do think  - I hope and trust you, dear reader, will let me know if I'm wrong - that there's room to engage with the rhetoric of these essays without rendering judgement on the choice of the woman herself. That's what I'm going to try to do below.

Here's one from Yahoo! Parenting in February -  The mother got the diagnosis and then made a decision to abort. Again, her body, her choice. But here's how she describes the process.

I didn’t want to keep the baby. My child deserved better than a life of struggle and frustration due to a condition that he or she would never be able to change. Plus, there was no predicting the severity of the disorder — some children with Down Syndrome are able to feed themselves and attend school; others require more urgent and consistent care. Knowing that my husband and I wouldn’t live long enough to provide the necessary long-term care for our child was stressful, to say the least. I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on.

“Do you remember the people who live in Nana’s nursing home — the ones who aren’t elderly?” I tried explaining to my husband. Mostly they just sat in their wheel chairs, staring into space. “No one comes to visit them,” Nana had said, adding that most had older parents who’d already passed on. My husband listened, then resumed his search...

 On our way home, we stopped at a sidewalk cafe. There I noticed an older couple with their son who appeared to have Down Syndrome. They were trying to prevent him from running out into the street so they could hand-feed him a slice of pizza and wipe his face with a napkin. Though he behaved like a rambunctious toddler, I wondered if he were a teenager or older (it’s often difficult to determine the age of someone with Down’s). I looked at my husband. He had noticed them too.

Notice there's no actual information there. There's supposition, fear, and a chance encounter on the street. This essay reinforces the notion that Down syndrome equals suffering, an argument that in fact vast reams of data contradict. The woman in question is, of course, under no obligation to engage with that data when making her decision. But is it fair to ask her to engage with it when writing an essay that has been shared almost 17,000 times on Facebook?

That's not a rhetorical question, but a genuine one, especially for my pro-choice friends. Is it fair? Or does it play into the hands of anti-choice ideology?

People are going to read this essay and some will cast judgment (the Down syndrome community is not happy about this piece). Others will sympathize and agree that a disabled life isn't worth living if you can avoid it.

I keep being drawn to this line: "I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on." People feel lonely. People lack independence. Sometimes people live in institutions.

This week there was a similar piece on XOJane - "IT HAPPENED TO ME: I Terminated a Planned Pregnancy: How my second pregnancy became a mother's worst nightmare."

I called my husband and he headed home from the city. As I waited for him, I spent the next two hours googling this chromosomal abnormality on my phone and wondering "What did we do? How did this happen? Was there something we could have done?"

When my husband arrived, we met with the geneticist. She told us that the blood test I had taken had indicated that the chances were 99 percent that our child was affected by this condition and that we needed an amniocenteses to confirm. She then described in detail the obstacles that we, our son and, potentially, our daughter could face with the arrival of this baby. She explained that it was totally random and there was nothing we could have done and no way to cure it. I scheduled the amnio for the next day.
In the morning, we went back to maternal fetal medicine. I didn't even feel the needle in my stomach and couldn't look at the sonogram screen. On Friday the preliminary results were confirmed.

Over the next few days, we spoke to expert after expert and it became clear that we would have no choice.

Overall, this is better than the Yahoo piece, but again something is missing. She says it wasn't Trisomy 21 (Down syndrome), but it was a chromosomal abnormality. The essay works pretty hard at avoiding naming the abnormality, but I'm guessing it was one of the other trisomies - many of which produce non-viable fetuses or infants with a very short lifespan (Trisomy 18 gets news because Rick Santorum has a child with Trisomy 18 and writes about it in anti-choice media).

Again - is it wrong for me to want this essay to explain the parameters of "no choice?" Can I ask for that while still unambiguously supporting reproductive rights? I'd like to know what the condition was and why she felt she had no choice. I feel that writing this essay without that information leaves the reader feeling like any diagnosis of chromosomal abnormality, according to "experts," mandates termination. That's simply not true.

These are things I'm struggling with in my attempt to find that pro-choice and anti-eugenic rhetoric. I think it's vital work, not just for the Down syndrome community, but because this is the near future of human procreation.

I am extremely open to criticism on this one (ideally on everything, but especially here) from my pro-choice friends and readers. Does questioning the rhetoric of these narratives, these public essays, feed anti-choice ideology, especially when it comes from a male writer like myself?

OPINIÓN: No debemos temerle al síndrome de Down http://t.co/3YRfPluotm pic.twitter.com/zKsFTjcSgO
— CNN en Español (@CNNEE) February 19, 2015

I have a new piece up at CNN (here's the English language version. I've just never, to my knowledge, been translated before, so sharing this!). I try to make some big points, but at the core there's an amazing story.

I got a message about an expectant mother of twins, one of who had Down syndrome, who was thinking about leaving her child with Down syndrome at the hospital (under safe haven laws this is not a crime). Still, it's not the best answer, so I got in touch with a friend, Amy Allison, who then put me in touch with Stephanie Thompson, the head of the National Down Syndrome Adoption Society. Stephanie reached out to "Jane," the mother, and eventually Jane decided to keep both children. To my mind, contact with the community - information - helped ease the fear of the unknown.

Here are a few points I want to emphasize:

1. I did nothing much. This isn't a story of me saving the day, but just sending a couple emails. As a result, lives changed. That's astounding.

2. We don't know the end of the story. This is not a "happy ending," but a better beginning. I wish Jane, her spouse and her children the best, but I also don't want to pretend the challenges aren't real.

3. This argument applies to all kinds of niche groups. The link was dropped in edits, but I wanted to link to Seth Mnookin's New Yorker article on fighting rare diseases. I know many people in the Queer community feel similarly that internet contacts are amazing for people, especially kids, who are isolated. There's a dark side too - hate groups find these connection tools equally powerful.

4. I cannot imagine a more pro-life story than this one. It's about a family trying to stay together after receiving better information and good contacts. I am, as anyone who reads me knows, pro-choice and anti-eugenics. I want people to choose life. I want people NOT to choose to abort based on pre-natal diagnoses of disabilities. But it is NOT the job of the state to regulate women's bodies. It is not the job of the state to make abortion, of any kind, illegal. It is ALSO not the job of the state to practice eugenics itself. Pro-choice, pro-information, anti-eugenics.

Now that stance is going to upset some of you in the Down syndrome community, and I regret that. What I really regret, though, are the reactionary voices who, because they disagree with me on abortion, can't celebrate the story I'm sharing here.

The Jérôme Lejeune Foundation is a strongly pro-life Down syndrome group. We don't see eye-to-eye on many things. But in the end, both of us want better lives for people with Down syndrome and to help parents, children, adults with Down syndrome, and communities do better. So they shared my story. And then came the reactionary backlash.



Sullivan basically wants to exclude anyone from the Down syndrome community who doesn't cleave to his hardline on abortion. He enters threads and demands that every conversation be solely about abortion and banning abortion. He's not alone, but rather an egregious example of a type.

So let's be clear. I welcome collaboration to my pro-life colleagues to our ongoing efforts to make life better for people with Down syndrome and other disabilities. I will try to persuade you that state regulation of women's bodies is not an ethical OR practical solution (it will just made Down syndrome code for poor as, elites will continue to abort, for example). I expect you to try to persuade me that I'm wrong. I am ready for that debate.

We have to build coalitions. I'm here. Are you?

I've been busy researching several new pieces this week so the blogging has been a bit light. That's likely to continue next week as well. Bear with me! Good stuff is coming.