Viability Standards for Babies Shortchange Us All
No one is "viable" without the support of others
I have two speaking events this week. On Tuesday at 12p ET, I’ll join Gracy Olmstead for a Q&A with the authors of The Innovation Delusion: How Our Obsession with the New Has Disrupted the Work That Matters Most. We’ll be discussing why maintenance matters and how to push for it to be valued appropriately.
On Wednesday at 8p ET, I’ll be doing a live Q&A with Plough about my article “Let the Body Testify.” I’ll be talking about the narrow mold women are expected to fit their bodies and their pain into if we want the world to recognize and respond to us.
Last week, I wrote an op-ed for The New York Times on the potential for Dobbs, an upcoming Supreme Court case on a 15 week abortion ban, to overturn Roe’s viability standard for abortion laws.
Viability has proven to be both an impractical and inhumane standard. With every advance in medical support for premature babies, abortion law has the potential to shift. The current law means that pro-choice advocates are threatened by what should be good news in support for vulnerable children.
For example, this past week, a little boy named Richard celebrated his first birthday after being delivered five months premature. He is the most extremely premature baby known to have survived birth. It took him six months in the hospital to be strong enough to go home.
The problem with the viability standard isn’t just that children like Richard challenge our assumptions. It’s that the standard presumes that our lives count for less when we need other people’s support. As I wrote:
Viability can’t be pinned down to a precise cutoff. The children featured in TwentyTwoMatters are the lucky ones — more than half of babies born at 22 weeks who are treated in intensive care don’t make it home from the hospital. Viability depends on where the mother delivers — an extremely premature baby born before 23 weeks or one facing complications might be viable if the baby receives care in a Level 3 N.I.C.U., but probably not if the baby doesn’t.
If the Supreme Court jettisons the viability standard in Dobbs, it will acknowledge that our dignity, before and after birth, does not depend on our ability to stand on our own. Every baby has a demand on its mother, and the mother’s need creates a just demand on the society around her. Voters in both parties are more divided on the issue than their party platforms suggest. Americans struggle with how to balance care for the vulnerable with the needs of women in a world that is hostile to babies and mothers.
Everyone is non-viable if abandoned to live totally alone. Babies need different levels of support after birth, but they all need someone. And that neediness doesn’t go away entirely as we learn to walk, eat, and speak for ourselves.
But we treat people who depend on others as lesser, unworthy of being treated with dignity. Pepper Stetler writes for Slate that many states ban people with Down Syndrome or intellectual disabilities from receiving organ transplants. She explains:
Health care providers often assume that someone with an intellectual disability would be unable to manage postoperative care, which might involve sticking to a strict schedule for taking medication and appointments for bloodwork. In 2016, the International Society for Heart and Lung Transplantation updated its listing criteria to incorporate new testing technologies and research, yet the new guidelines still discourage heart transplants in patients with intellectual disabilities, citing the potential for self-injurious behavior and the “inability to ever understand or cooperate with medical care.”
It is true that people with intellectual disabilities might need support from family, friends, and health care workers to manage postoperative care, which is an important part of a successful transplant. […] In fact, none of us are purely and intellectually able to care for ourselves alone after a major medical procedure. We’re all reliant on the guidance and care of nurses and delivery of meals from friends and family to set us up for success.
Before or after birth, with any level of mental facility, we all require support. There is no moment where a baby or a newborn or a teenager or a grown-up graduates to being entirely independent.
Our autonomy is always limited, our dignity is not.
"Our autonomy is always limited. Our dignity is not." I've been reflecting on versions of this because I recently met up with one of my best friends from college who is a quadriplegic and uses a motorized wheelchair. I hadn't seen him in several years due to a combination of having babies and COVID, but seeing him recently reminded me of all the recon work that his group of friends used to have to do in order to do simple activities with him. If we wanted to go out to dinner, it wasn't enough to call ahead and tell the restaurant we had a handicapped person in our party - more than once a restaurant that told us they were "handicap accessible" had a step up to the front door or they had put our reserved table up or down a set of steps that he couldn't navigate. Entire sections of our college town didn't have curb cuts on the sidewalks, so he couldn't easily cross the street at crosswalks, we were always jaywalking from one driveway or alley to another. (I realize this dates me but all of this was before Google Street View and Yelp, so our ability to research these things beforehand was limited.) Anyway, I showed up with my kids to meet him at a park a few weeks ago and realized I hadn't done any of the research that used to be second nature; there were no curb cuts and no paved trail from the parking lot to the playground and picnic area, no handicap-accessible bathroom, etc. But what had I researched? That the playground would be shaded in the afternoon sun and that there was a port-a-potty available, both things I thought about in the context of MY children and THEIR needs. How quickly I forgot someone else's needs! I was heartily ashamed of myself. Fortunately we were able to park the van carrying my friend so he could motor up the hill to the playground and picnic area and we all had a lovely time together, but two weeks later I'm still reflecting on it. I think Leah may have meant "thinking less of those who need more" in the way of not valuing them as fully human, but in my case, I literally spent less time thinking about someone whose needs (which I was quite familiar with! I cannot claim ignorance!) were much greater than mine and my children's.
Oh, this is such an important conversation, and again I have to recommend Raising A Rare Girl to all and sundry, because it's so good at recognizing that disabled peoples' needs aren't completely alien to the human experience, they're just sometimes more visibly intense versions, so dignity can't be something we earn by doing things --- no one, in the long run, would have any at all --- but must be innate. Or present even before birth.