“The examination combines the techniques of an observing hierarchy and those of a normalizing judgment. It is a normalizing gaze, a surveillance that makes it possible to quantify, to classify, and to punish. It establishes over others a visibility through which one differentiates them and judges them.” (Foucault, Discipline and Punish)
On Christmas Day 1999, when she was six years old, my little sister Jenna swallowed a whole jar of diuretic pills. Or rather, she chewed them. She always chews pills like they’re candy. And that is probably what she thought they were, lying there on the piano side table at our grandparents’ definitely un-childproof house in a leafy Pennsylvania suburb. This was no suicide attempt. Jenna has Down Syndrome, but her cognitive slowness did not ever imply that she was any less adept than other children at briefly escaping the watchful eye of even the most conscientious parents, which mine were and continue to be, and causing plenty of havoc in those brief few unsupervised seconds.
If she had swallowed the pills whole and without chewing, we probably would not have realized it in time to get her to the hospital before the damaging effects of an overdose became visible, and perhaps irreversible. It was only because of the white powder from the chewed-up pills at the corners of her mouth and dusting the front of her brand new Christmas dress, complete with the shoulder pads that late nineties fashion demanded. That white powder led us to the empty bottle of pills, and the empty bottle of pills led to panic. She was taken by an ambulance which, thanks to those willing to work on Christmas Day while the rest of us celebrated at home, arrived promptly. And that is when the real trouble began.
The ambulance drivers, citing “policy,” did not want my mother to ride in the ambulance with them on the way to the hospital. But my mother had by then acquired a protective streak she never hesitates to summon in defense of any of her children, let alone her most vulnerable one, Jenna.
Well, then I’ll just put her in my car seat in our car and I’ll drive behind you to the hospital.
We cannot let you do that; it is against policy and we need to get there quickly.
We’ll get there quicker if you just decide that I’m going to come in the ambulance with you, because she is not leaving my sight.
Eventually my mother got her way, as she often does. Maternal watchfulness triumphed over protocol, and she rode in the passenger seat of the ambulance to the hospital, talking to and reassuring an increasingly sick Jenna through the rearview mirror the whole way there.
When they got to the hospital the conflict of wills intensified. The doctors decided to pump charcoal into Jenna’s stomach to absorb some of the medicine through a tube in her nose, which was made difficult because Jenna has the flat nose phenotypically common for people with Down Syndrome. One again, the usual practices did not apply. There was little room for Jenna in the best practices of that hospital. Jenna was in need of an IV, but because of her low muscle tone, her veins are difficult to find. The doctors and nurses probed her arm over and over searching for the vein, and when she understandably began to cry from their stabbing, they proceeded to attempt to hold her down.
“She gets bloodwork done all the time. She’ll hold her arm out and let you do it if you just talk to her.” They never once tried to talk directly to Jenna. And so my mother took Jenna in her lap, told her to hold out her arm like she was used to doing, and the doctors were able to find a vein without problem. My mother’s maternal affection did what their attempts at coercion could not do.
That maternal affection took an increasingly and justifiably protective cast throughout Jenna’s early development. Her first such bout took place before Jenna was even born, when the unmistakable signs of Down Syndrome were detected in an ultrasound scan and the ultrasound technician brought in a doctor to consult my parents on their options to “deal with it.”
Stories like that one are so common that it would likely come as little surprise to any family that has decided to carry a child with Down Syndrome to term that the BBC reported in October 2020 that women were offered abortions up to fifteen times over the course of their pregnancies, even after repeatedly signaling that they did not want the procedure (my own mother recalls being asked five times over the course of fifteen minutes). But her advocacy and protection of Jenna have been constant now for decades, giving the lie to those who suggest that heroism is absent in modernity.
Stories like those reported in the BBC are obviously troubling for those who are pro-life. But they should be a subject of concern even beyond that group. After all, it is beyond question that this practice violates the sacrosanct ideal of non-paternalism on the part of physicians. At the very least, it is a deployment of the authority and mastery of the medical professional over the purported ignorance and vulnerability of the patient — precisely the sort of power imbalances that Leftists continue regularly to note and decry.
But it would be a mistake to see the problems with the healthcare workers in my story above, or in that BBC story, as reducible simply to the personal prejudices of individual medical practitioners. In fact, the presumption of the undesirability of people with Down Syndrome is woven into the best practices and standards of care for these medical professionals, and likely, into the wider cultural institutions of western society.
There are innumerable ways of categorizing this phenomena. Charles Taylor would say a pre-reflective bias against people with disabilities constitutes the social imaginary of the medical profession. Pope John Paul II, with much more polemical and moral force, would call it a “culture of death.” Foucaldians can see here a hint of that regime of normalization that suppresses eccentricity and uniqueness. Liberationists would see here a structural evil. There is, in short, something here that is widely objectionable to a varied group of people, and yet the practice persists—a vestige of a long history of medical discrimination against persons with disabilities.
In his 1973 article, “Mongolism, Parental Desires, and the Right to Life,” Christian ethicist James Gustafson takes as his bioethical case study the true story of a child born in 1963, before the advent of the prenatal testing regime. A child was born and diagnosed with an intestinal blockage that could be corrected surgically at very little risk to the child. But that surgery did not take place. The mother refused permission for that operation to take place because she did not want the child on account of the boy having Down Syndrome—referred to at the time as “mongolism,” a word that manages to combine ableism and racism in one word by comparing the phenotypically slanted eyes of a person with Down Syndrome to those of people thought to be historically descended from the Mongols. And so, Gustafson reports unceremoniously, “the child was put in a side room and, over an 11-day period, allowed to starve to death.” That this is evil is beyond question. What we do not know is whether to be more outraged by the barbarism of this act, or by how recently it was performed.
The remainder of Gustafson’s article is an ethical analysis of this series of actions. Ultimately he argues, and rightly, that it was the morally vicious course of action. But the information gathered along the way is revelatory. Take, for instance, when the doctors were asked whether they would go to court to override the parents’ wishes if the child did not have Down Syndrome. They responded unanimously that they would, and they gave the following rationale: “When a retarded (sic) child presents us with the same problem, a different value system comes in; and not only does the staff acquiesce in the parent’s decision to let the child die, but it’s probable that the courts would also. That is, there is a different standard. . . . There is this tendency to value life on the basis of intelligence. . . . [It’s] a part of the American ethic.” The doctor quoted here said more than he knew, for by saying that at the heart of the American ethic is a double-standard that values life inequitably based upon intelligence, he meant to justify the hospital’s practice, and instead condemned the entire American ethic.
That same social imaginary has changed but little, and it combines now with new screening technology, the universal adoption of which constitutes an existential threat to people with Down Syndrome. This was the central topic of an article published in the December 2020 edition of The Atlantic. It was published under the title “The Last Children of Down Syndrome,” a strangely ungrammatical title that performs in microcosm one feature of ethical discourse in liberal democracies: We do not quite know how to speak of the disabled. But at least the article did endeavor to speak of them, and should be lauded for doing so. Nowhere in it is the absence of feeling and moral peril that some conservatives so frequently ascribe to establishment media sources.
The article recounts how prenatal testing in Scandinavia combines with discriminatory views against persons with disabilities in order to render their existence almost completely extinguished. It is comprehensible that Down Syndrome occupies this role; the phenotypic characteristics that accompany it are easy to discover in prenatal testing, and therefore the fetuses carrying them are easy to segregate and eliminate. Yet on the other hand, those who know several people with Down Syndrome—which is rendered increasingly impossible in a society in which they have been almost entirely eradicated—know Down Syndrome to be a disability that admits a wide variety of abilities and functions. Some, commonly those with comorbidities like autism, may never become fully verbal and communicative. But it is common for people with Down Syndrome to learn to read and even to hold a low-skill job. It is nearly universal for them to have relationships of love and affection. None of this can be determined in the womb by the ultrasound wand. The fetus is reduced to one single characteristic—disabled—and jettisoned accordingly.
At the heart of this article is a moral puzzle the difficulty of which emerges from liberal society’s commitments both to the rights of the individual and to the particular protection of minoritized groups. The acts discussed here (in this case, abortions of fetuses with Down Syndrome), would not individually be the rightful object of international news attention. But when those individual acts are sufficiently multiplied, the aggregate result is an outcome that is obviously discriminatory and prejudicial against the continued existence of a minority community, which community ought to be the object of care, attention, and protection among the majority population: “Few people speak publicly about wanting to ‘eliminate’ Down Syndrome. Yet individual choices are adding up to something very close to that.”
In other cases that bear those same moral features, we do not hesitate to name such a pattern a structural injustice—that is, an injustice not reducible down simply to any particular prejudice on the part of individuals but which permeates a legal structure, cultural norms, and the social imaginary. We see such structural evils as residues of less-enlightened lawmakers whose errors it is our duty to slough off, a task in which to delay tempts the rightful accusation of complicity. Justice delayed is justice denied. But of course, western societies are not yet at the point of moral development to recognize prenatal testing combined with a regime of abortion on demand as constituting in our moral evaluation what it is in fact: a grave, civilization-defining evil that is the rightful object of moral censure and legislative remedy.
To dramatize this fact, consider the following hypothetical. Imagine that a biological basis for homosexuality were discovered and that our prenatal testing technology advanced to a point where it was possible to reliably detect that biological basis for homosexuality in utero. Imagine then that upon the development and widespread adoption of this technology, birthrates for children with this biological basis for homosexuality began to decline precipitously almost to the point of the near-erasure of that class of people, on account of a newfound ability to abort children with the relevant biological markers and the social prejudice against them by parents who were concerned that homosexual life was somehow deficient and not worth living.
Gay-rights activists would rightly see this as the result of a prejudice against the desirability of a homosexual life. They would seek to alter public opinion about the desirability of a homosexual life in order to undercut the moral imaginary that produces the widespread devaluing of homosexual life. And, here is what is crucial for our purposes, they might go so far as to argue—again, by my intuitions, rightly—that the harms against the class of homosexual persons are so grave that they cannot wait for remedy simply upon the renovation of the moral imaginary, but instead require some kind of legal protection, in the shape of bans on selective abortion of those kinds. The harm here is not just against individual fetuses that are aborted, but against the entire class of persons of which those individual fetuses are members.
The minority model of disability permits us to make this hypothetical parallel. The minority model (sometimes called the Social Model of Disability) holds that the primary problem of persons with disabilities is not medical, but social. According to this model, the primary hurdle to a flourishing life is not some physical handicap, but a society structured in ways that subtly and overtly exclude persons with disabilities from full participation in that societal life. It is this model that influenced the original wording of the Americans with Disabilities Act to describe persons with disabilities as ““a discrete and insular minority,” worthy of particular protections. Without those protections, a society renders those lives less livable, and then deems them less worthy to be lived.
The view that there are lives unworthy of being lived is not a novel one. It appears in a very different context in Socrates’s famous Apology, in which he says against his accusers that he has pursued the philosophical life because “the unexamined life is not worth living.” It is perhaps the most frequently-quoted phrase from Socrates. It appears on the first day of Introduction to Philosophy courses the world over. Behind it is a germ of insight that has guided humanistic study since Plato recorded it, namely, that human beings are, so far as we know, unique among the creations of the gods that are capable of reflecting upon our actions and guiding them in accordance with Reason, which is our participation in the divine life. Not to apply Reason as the rule to our actions is, therefore, to make us like the beasts rather than like the gods. Therefore, a life lived justly and philosophically is superior to one lived unjustly and instinctively.
But I would like to submit that “a life not worth living” is not a Christian category. It sits strangely next to that great Augustinian principle that being is itself interchangeable with Goodness, and that life is itself the condition of life with God. Therefore life is, in all cases, to be received as a great good, worthy of respect and protection. This Christian belief blocks the subtle implication lurking in Socrates’s famous dictum that those who are, because of disability or some accident of history and autobiography, unable to examine their lives thereby forfeit their claim to a good life.
If Socrates was captive to the idea that the practice of philosophy was the condition of a worthy life, America flirts often with captivity to the notion that accomplishment is the condition of a worthy life. Only occasionally are there cracks in this edifice, and one crack in it appears in Zhang’s article:
“Stephanie Meredith, the director of the National Center for Prenatal and Postnatal Resources at the University of Kentucky, told me of the time her 20-year-old son saw his sister collide with another player on the basketball court. She hit the ground so hard that an audible crack went through the gym. Before Meredith could react, her son had already leapt from the bleachers and picked his sister up. “He wasn’t worried about the rules; he wasn’t worried about decorum. It was just responding and taking care of her,” Meredith told me.
She had recently been asked a simple but probing question: What was she most proud of about her son that was not an achievement or a milestone? The incident on the basketball court was one that came to mind. “It doesn’t have to do with accomplishment,” she said. “It has to do with caring about another human being.” That question had stayed with Meredith—and it stayed with me—because of how subtly yet powerfully it reframes what parents should value in their children: not grades or basketball trophies or college-acceptance letters or any of the things parents usually brag about.
By doing so, it opens the door to a world less obsessed with achievement. Meredith pointed out that Down syndrome is defined and diagnosed by a medical system made up of people who have to be highly successful to get there, who likely base part of their identity on their intelligence. This is the system giving parents the tools to decide what kind of children to have. Might it be biased on the question of whose lives have value?
This anecdotal evidence supports the common experience of persons with Down Syndrome, and what little empirical research has been performed on them. In what is to my knowledge the only extant study on empathy and virtue acquisition among children with Down Syndrome, researchers found that when placed into an experiment in which a researcher feigned pain to study the responses of children, children with Down Syndrome were more likely than other children to attend and attempt to comfort the researcher than did typically-developing children. Said more colloquially, their social intuitions were inordinately attuned to the care and consolation of the injured than were the intuitions of any other group studied.
Zhang herself reflects on the frequency with which people replied to her investigation into Down Syndrome with surprise at what they are able to accomplish in spite of their disabilities:
I can’t count how many times, in the course of reporting this story, people remarked to me, “You know, people with Down syndrome work and go to college now!” This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Down syndrome. But it also does not capture the full range of experiences, especially for people whose disabilities are more serious and those whose families do not have money and connections. Jobs and college are achievements worth celebrating—like any kid’s milestones—but I’ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.
My suspicion is that the reason Zhang’s acquaintances reply by grounding the worthiness of a human life in its accomplishments is because that is the way we meritocrats conceive of ourselves. We are habituated to a world of accomplishment and competition, and consequently have very little intuitive comprehension of a life largely devoid of those.
The subtle implication that dignity adheres not to life but to accomplishment showed up again just a few days before Zhang’s article. The New York Times reported on Chris Nikic, who recently became the first person with Down Syndrome to complete a full Ironman Triathlon. At the crucial moment of the race, Nikic “summoned a well of patient, hopeful perseverance—along with the energizing power of the simple vision he had set for his life.” We are familiar with these themes: willpower, dream-chasing, goal-setting. As is so often the case in sports, the physical achievement is a metaphor for something larger: “Chris Nikic knew this wasn’t only about finishing an Ironman, but about showing himself what he could achieve in the future. His own home. Independence. A wife as kind and beautiful as his mother.”
But the aspirations Nikic articulates here are ones that, because of the limitations posed both by the handicaps that accompany Down Syndrome, and because of the continued prejudices against those with Down Syndrome, might never come into being. If they come into being for Chris, that is no indication that it will come true for others with Down Syndrome. The American dream of homeownership, independence, marriage does not happen for many Americans. It is the logic of merit and accomplishment, not the logic of grace, that convinces us that dignity attaches to those things.
At their best, liberal societies are able to distinguish between a baseline moral standing that every human being possesses by virtue of their humanity (commonly called “dignity”), and the special recognition that accompanies excellence of achievement (commonly called “honor” or “glory” or “praise”). Allowing these two systems of evaluation to work side-by-side prevents equality from lapsing into homogeneity and dignity from being contingent upon excellence or achievement. But in a world that prizes accomplishment over existence, those unable to perform the latter will come to be seen as unworthy of the former.
This is the difficulty of framing Nikic’s story as a triumph of the indomitable will. Stories like these are important correctives to the invisibility and misunderstanding that mark the position of persons with Down Syndrome in modern America. However, left intact by such stories is the suspicion that worth and dignity adhere to accomplishment, but it just turns out that those with disabilities are able to accomplish more than we thought they might. These examples are inspiring, but they have the nefarious side-effect of implicitly suggesting that those with disabilities who do not run marathons or complete an Ironman do so not because of their congenital heart defects or the absence of a social support network, but because they did not work as hard as they could have, they did not pursue their vision with undoubting singleness of mind. Meritocracy is content to accept occasional visitors if only they are willing to shore up the logic of meritocracy. That is why many disability advocates call such stories “inspiration porn,” a term coined in a Ted Talk by Stella Young:
I use the term ‘porn’ deliberately, because they objectify one group of people for the benefit of one group of people. So in this case, we are objectifying disabled people for the benefit of non-disabled people. The purpose of these images is to inspire you, to motivate you, so you can look at these images and think ‘well, however bad my life is, it could be worse. I could be that person.’ But what if you are that person?
As an alternative to the notion that dignity and worth adhere to accomplishment, consider the little-known The Congratulations Project. The Congratulations Project is overseen by the PALS program, which creates summer camp experiences for people with Down Syndrome. Each camper is paired with a volunteer (their “pal”) for the duration of the camp. They go to the beach, play sports, ride roller coasters, sing karaoke. One small part of the weeklong camp offers campers with Down Syndrome the opportunity to write letters of congratulations to families who have recently received a prenatal diagnosis of Down Syndrome. The logic behind this project is stated in the Congratulations Project book itself:
When a baby is diagnosed with Down Syndrome, parents are confronted with coping strategies, given statistics, and often told ‘I’m sorry.’ This book contains handwritten, original letters from individuals with Down syndrome to expecting or new parents whose baby has received the same diagnosis. They all begin with the same, simple message: congratulations.
The Congratulations Project is not explicitly Christian, but it is implicitly theological. The notion that the proper first word at the existence of new life is only and always “congratulations” flows from the deep intuition that life is itself a gift worthy of celebration, that existence is resplendent in glory visible even through the misty-eyes of heartbreak and disappointment. God’s first word over humanity is “good.” Camp PALS’s first word over new humanity is “congratulations.”
Jenna’s letter for the Congratulations Project goes like this:
Dear parent,
Congratulations on your new baby! My name is Jenna Hawkins and I am (sic) camper at camp PALS. I am proud of being an aunt to my new nephew, Wesley. I like to swim like a mermaid, color, and watch movies. In the future, I want to be a fashion designer and get married. I love my life because of the friends I have made at church and camp PALS. My faith is very important to me. I have faith that you will have a happy family just like I do.
Sincerely,
Jenna
Jenna had to have her stomach pumped to expel those diuretic pills from her system. She and my mother spent Christmas night in the hospital under the observation of the doctors whose skill and whose medical technology made her full recovery possible. The same medical system structured by intuitions and technologies that might easily have been deployed against her life roused instead to save it. So it is in the ambiguous world where the badness of sin and the goodness of creation intermix all the way down. She was transferred by ambulance to the Children’s Hospital of Philadelphia (CHOP) where my mother slept in her bed with her overnight, and was discharged and sent home the next day.
She turned twenty-seven this past December. She will love that I told her story here, and that you have read it, for two reasons. The trivial reason is that she, like many other sinners, loves attention far too much. The second reason is the more substantive: she loves her life. She loves her life even though she will, like most Americans, never finish an Ironman. But that does not finally matter. Human life is good and worthy of dignity not because of accomplishment, but simply because it is loved into being by God. Jenna loves her life. In this, she is our teacher.
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