Old Songs, New Tests, and Expensive Children

On Thursday, February 6th, Tim Armstrong, the CEO of AOL, justified a restructuring of the company’s 401(K) matching plan by citing the sick children of employees. Two sick children, to be exact. At an internal town hall meeting, Armstrong claimed, "We had two AOL-ers that had distressed babies . . . that we paid a million dollars each to make sure those babies were OK in general.” Unsurprisingly, the backlash was substantial. Tone-Deaf CEO is a tune we all know, and Armstrong’s improvisation on the theme, like others in the genre, was both memorable and inelegant. The complex discordance of Caring (“OK in general”), Slashing (the benefit cut), and personal wealth (Armstrong’s salary last year: twelve million dollars)—not to mention the blaming-the-infants thing—was answered by a disapproving choir, tweeting and talking and commenting, more or less in unison. Armstrong has since apologized and restored the matching plan to its previous form.

Rising above the other voices was a personal essay published in Slate, and written by Deanna Fei, the mother of one of the babies in question. Fei’s daughter was born months premature, weighing less than two pounds, and her narrative exposes the euphemism “distressed” for what it is:

We were too terrified to name her, to know her, to love her. In my lowest moments—when she suffered a brain hemorrhage, when her right lung collapsed, when she stopped breathing altogether one morning—I found myself wishing that I could simply mourn her loss and go home to take care of my strapping, exuberant, fat-cheeked son.

Since Armstrong’s announcement effectively compromised Fei’s privacy, she essentially had two options. She could remain silent, thereby accepting Armstrong’s characterization of her daughter as a “cost,” or she could out herself, then speak for her child.  She chose the latter, replying to his numbers with a story. In doing so, she makes clear that numbers are not enough, that cost and value are not the same:

I take issue with how he reduced my daughter to a “distressed baby” who cost the company too much money. How he blamed the saving of her life for his decision to scale back employee benefits. How he exposed the most searing experience of our lives, one that my husband and I still struggle to discuss with anyone but each other, for no other purpose than an absurd justification for corporate cost-cutting.

Since the story broke, I have been thinking about who in our society gets tagged as costly, and why. The questions are less economic than social: At what point does cost morph into blame? In complex economic systems—where anything from executive salaries to infant hospital stays can be cited as a cost—which costs are cited, and for what reasons? And to what extent do cultural assumptions drive the way costs are talked about? When costs are spoken of, to what extent is the language of cost a proxy for assumptions about human value?

My connection to these issues is personal. I also have a daughter whose life was saved by an insured hospital stay. So far as I know, none of the personnel who worked hard to save her—once, as I watched—begrudged the effort: not the heart surgeon, who remains a friend, or the ICU attending physician who kept her an extra day out of caution, saying, “Gotta have at least one cute kid around here,” or the nurse who drew on a seemingly endless fund of stuffed animals, and (possibly against policy) always brought one for Laura’s older sister.

Laura was distressed, and she was brought out of that distress, and she now is in the seventh grade. Her ability to be a Contributing Member of Society is due entirely to the medical professionals who were doing their jobs, and though I suppose they may have hoped that she would one day Contribute in that way, I’m pretty sure they were okay with discharging her to a grateful family. She repaid her debt, if there was one, by surviving.

But Laura also has Down syndrome, and for this reason, Armstrong’s remarks have a different resonance for me. Disability is widely feared, and widely misunderstood, and these fears have historically taken economic form. Early twentieth century eugenicists lamented the cost to society caused by the “feeble-minded,” and hoped to save these costs for the more deserving, not only in the present but also for future generations. It is easy to see, with the benefit of distance, the prejudice and disdain informing their calculations. It is easy to see that cost was a proxy for ideas about human value, that ideas of value are embedded in culture, and that our culture is, to put it politely, perennially troubled when it comes to thinking about disability.

These disturbing notions are only a comment section away, as Alison Piepmeier found recently. Alison, a friend and academic collaborator of mine, is Director of the Women’s and Gender Studies Program at the College of Charleston. She’s also uncompromisingly pro-choice, and the parent of a child with Down syndrome. Her recent Motherlode article in The New York Times began its own firestorm: it drew nearly five hundred comments, some of them floridly nasty even by the usual standard. Because I’ve read enough comment sections to know that the question of cost would have come up, I emailed her to see what people had said. She replied with many quotes, a few of which I reproduce here:

Many down-syndrome kids are extremely low functioning, are born with serious physical problems, and as mentioned, as they age (though many don't live a long life) become worrisome for aging parents. No one is guaranteed a perfect child - but I often see aging parents - over 70, still caring for a down-syndrone [sic] 50 year old. This is a tremendous burden. Then society needs to step in and provide the proper assistance - quite costly since many folks will never be able to support themselves or live on their own. It really makes sense to end this pregnancy quickly and early.

Another:

I'm responsible for the costs and consequences of my lifestyle choices, and those who choose to procreate should be held accountable, as well. To deliberately and knowingly bear offspring that will present abnormally high costs to society is not a virtue or act of selflessness, it's extremely selfish and short-sighted. And as usual, the village will be expected to pick up the tab.

And another:

Would-be parents wouldn't be so eager to roll the dice if they knew they would be responsible for ALL the costs of the extra medical care and therapy that disadvantaged children would need, as well as the creation and financing of a trust fund to take care of these individuals once the parents have died. But it's easy to be altruistic on somebody else's dime, isn't it?

These quotes are only a sampling. (Transcribed, the comments run to one hundred and seventeen pages. Single-spaced.) It’s tempting to dismiss them as the work of a few bad apples, except that (a) the comments above are pretty typical of the whole 117-page barrel, and (b) the core idea beneath the sarcasm—that we can divide society into those who Contribute and those who Drain—is a deeply held one.

That health care resources are limited, and need to be distributed, is an undeniable fact. But there are three problems to consider. First is the practice of selective focus when costs are discussed. (As Fei points out, Armstrong cited neither cancer nor asthma sufferers when reckoning AOL’s health care costs.) The second is the practice of talking about people rather than illnesses or procedures: in Armstrong’s logic, it was the baby, not her distress, that cost the company money. And the third—a consequence of #1 and #2—is the practice of blaming groups of people for costing “us” money. This construction, rather than treating health care as a human right, divides citizens into the deserving and undeserving. Into those who Contribute, and those who Drain.

As historian Alexandra Minna Stern pointed out to me, that idea reaches far beyond Down syndrome, driving—among other practices—the recent sterilizations in California prisons. Dr. James Heinrich, the physician responsible for the sterilizations, defended them explicitly in terms of cost, telling the Center for Investigative Reporting “that the money spent sterilizing inmates was minimal ‘compared to what you save in welfare paying for these unwanted children – as they procreated more.’” (Presumably it was the state, and not the mothers, who pronounced these hypothetical children “unwanted.”)

Of course, a brief look at the news will show that when resources are scarce, scapegoats are needed: it’s not only putative children blamed as expensive. Undocumented immigrants, drug users, “welfare queens,” food stamp recipients . . . That many of these are favorite targets of politicians on the right should give people on the left pause before they adduce cost savings as a justification for screening programs. Labeling future humans as expensive, whether the children of “the feeble-minded” or of convicted criminals, has a long and ugly history in our country.

Reading the comments after Alison’s Motherlode piece, I thought of a 2001 guidebook entitled Your Genetic Destiny: Know Your Genes, Secure Your Health, Save Your Life. I’d come across it while researching the way Down syndrome is represented. It’s written by medical geneticist Aubrey Milunsky, and it strongly advocates genetic testing as part of planning a healthy pregnancy. Though it’s free of sarcasm, the description of Down syndrome, aimed at prospective parents, is still notable for its swerve from individual choice to social burden:

[T]he average life expectancy of a person affected with Down syndrome now exceeds 60 years, given advances in the surgical correction of heart defects and in the treatment of common infections. The relatively long life expectancy has meant that brothers and sisters are almost invariably left with the burden of caring for those with Down syndrome. If there are no siblings, or none willing to take on their care, the State almost always ends up with this responsibility.

There’s a lot to note here. First, this is not information, but persuasion. Second, the persuasion blurs an individual choice with a social imperative: by implication, to have a child with Down syndrome is ethically wrong, because it is expensive to society and burdensome to siblings. Third, though the implied problem is social, the solution is technological: that is, rather than making sure we have structures in place to care for our most vulnerable citizens, it is strongly implied that we should prevent them from existing in the first place. And last, Milunsky’s final sentence is circular: by definition, if no one is able to take care of people, the State has to do it. (Scary, that capitalized State. I almost wrote “Homeland.”)

Milunsky’s description, as well as the online comments cited above, suggest an unintentional result of prenatal testing: that those who choose to bear children with Down syndrome are perceived as irresponsible, because they could have known. This is not, of course, the intended result of prenatal testing. Nor is it a necessary one. Prenatal testing provides information, and makes a choice possible. But in a culture where disability is stigmatized, the very existence of a choice can make disability seem less like a part of human diversity, and more like an avoidable mistake.

Prenatal testing is not, in and of itself, eugenic. But its presence may encourage the flourishing of eugenic ideas, including the blaming of parents for a child’s ills. That idea, most (in)famously expressed in Chief Justice Oliver Wendell Holmes’ formulation that “Three generations of imbeciles are enough,” is poisonous precisely because it undoes our cultural meaning of relatedness. The positive connotations of words like “brotherhood,” “sisterhood,” and “family,” and phrases like “blood is thicker than water,” suggest that we understand relatedness in a positive way: as belonging. But in a eugenic formulation, relatedness means outsidership, and the act of having a child—if that child has a preventable, unwanted quality—constitutes a demotion in the human family. From this historical perspective, the disapproval aimed at expensive children—particularly when that expense, with the aid of screening, can be avoided—is an old song in a new key. 

Which brings us back to the “distressed babies.” In her essay, Deanna Fei writes that in an early attempt to contain the fallout from his remarks, Armstrong

issued an internal memo—not an apology—that sought to clarify how he had “mentioned high-risk pregnancy as just one of many examples of how our company supports families when they are in need.” Then he urged employees, “Let’s move forward together as a team.”

Armstrong’s specific mention of “high-risk pregnancy” is intriguing. On its face, it is positive: according to Fei, AOL’s benefits are good, so she did in fact feel supported. But there’s a darker reading too: that “high risk” pregnancies were trotted out to prove corporate support because doing so would be seen as going the extra mile, as helping families even if the pregnancy in question was “high risk.” (The fact that “high risk pregnancy” is an automatic, unquestioned phrase suggests the extent to which testing permeates the experience of pregnancy, that its information frames reproduction in an indelible way.) 

In fact, as Fei writes, her pregnancy was not “high-risk”: as she writes, “every exam indicated that our daughter was perfectly healthy.” She continues,

In other words, we experienced exactly the kind of unforeseeable, unpreventable medical crisis that any health plan is supposed to cover. Isn’t that the whole point of health insurance?

On factual grounds, Fei’s rebuttal is apt: sudden preterm labor can happen to any expectant mother. But at the same time, those words unforeseeable and unpredictable give me pause. Health plans should cover you even if your crisis is foreseeable or preventable, because in a world of available prediction, the alternative is inhumane.

George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.

Previously on Biopolitical Times:

• Anatomy of a Webpage, Part 3: Selling “Peace of Mind”
• Anatomy of a Webpage, Part 2: Preconception Services
• Anatomy of a Webpage: Marketing Fetal Gene Tests and Sequenom’s MaterniT21