Nov 19, 2020
I think a lot of people my age might remember reading about Paul Farmer for the first time in the New Yorker profile by Tracy Kidder in 2000. It contains all kinds of insight, but it’s this passage that has stayed with me:
Farmer told me, “It stands to reason that a person who lives the way I do is trying to lessen some psychic discomfort.” He had wanted to avoid “ambivalence,” he said, and had tried to build his life around “areas of moral clarity”—“A.M.C.s,” in Partners in Health lingo. These are areas, rare in the world, where what ought to be done seems perfectly clear. But the doing was always complicated, always difficult, in his experience. Thinking of those difficulties, I imagine that most people wouldn’t willingly take them on, giving up their comforts. Yet many would like to wake up knowing what they ought to do and that they were doing it. Farmer’s life looked hard, but by the time we left Haiti I also thought that it was enviable.
A.M.C.s—rare in the world indeed. Many of us “live the questions” instead—knowing, as we do, that most decisions lie in the gray. My family takes part in volunteerism that’s pretty squarely in the A.M.C. realm, and as in Farmer’s case, that’s in part a matter of faith and in part a matter of lessening the psychic discomfort that comes from living our lives in the semi-compromised way we feel compelled or constrained to do: what we own and what we spend and how we plan for the future. The gray areas, punctuated by some work that touches the A.M.C.s.
Of course, it’s a particular accomplishment, too, to name the facets of the many moral gray areas in our lives, as Sarah Zhang did in this long piece on Down syndrome and selective termination. Zhang got at all the issues, from high-level bioethics to on-the-ground gendered realities of caregiving. And the paradox of northern European cultures, where social safety nets are strong and where passive eugenics stands to nearly eliminate Down syndrome altogether, one private decision at a time. It’s truly gray—and a thorny set of issues for which there’s no right side of history. Reproductive autonomy, a political provision that I support, is on a collision course with selective termination as a matter of private choice, and especially when screening is not just a private matter, but a policy-level standard of care, as is the case in Denmark.
Too few people speak about agonistic pluralism, Chantal Mouffe’s idea that democracy necessarily includes states of contestation. This is something more than simply acknowledging gray areas, and something more than “living the questions.” Agonistic pluralism implies vigorous debate, uncomfortable conversations, voicing ideas that can easily remain tacit, held in the background in favor of more feel-good affirmations of “universally” held beliefs: about the generalized, vague and abstract value of each human being, about the good of diversity for its own sake.
So Zhang makes the subtext into text, and rightly so: “Few people speak publicly about wanting to “eliminate” Down syndrome,” she writes. “Yet individual choices are adding up to something very close to that.” It’s a relief to someone like me to see it spelled out as such.
And yet—no A.M.C.s in sight here. How I envy my peers’ clever tweets and poster slogans, their tidy neologisms for diagnosing what’s wrong with the world and how to fix it. But this is one of those topics that just won’t compress and distill, no matter how you try. It takes all the words that Zhang has brought to bear.
And—so—what’s the effect of a lengthy journalistic exploration like this? Much as I respect the form, I fear that its results are pure hand-wringing. How fraught, how thought-provoking, and how important, people will say. And most of all, that unsatisfying refrain, how complicated.
It happened that this article came out in the days after I watched talks by two scholars connected to disability rights, from two political positions that are very far apart, nearly as far apart as two can be. And in both, purely as side remarks, the speakers noted the Biden administration’s troubling appointment of Ezekiel Emanuel to its COVID task force—he who made a big splash with his hopes not to live past the age of 75, on grounds that little quality of life exists in old age.
What struck me about this mention was not the Emanuel appointment itself but the parallels in these two disparate political universes, both of whom made strong calls for a definition of human worth and dignity outside culturally normative ideas of productivity, efficiency, and independence. They were calls, in other words, for worth and dignity that would make room for people with Down syndrome. The parallels and the gulf between them were notable and, it seems, unresolvable: a Catholic scholar’s groundedness in the sacred nature of human life, bringing with it a politics that leans heavily anti-abortion; and a rights activist who rejects the market logic of coercive capitalism mapped onto the human body, including the treatment of women’s biological decisions as anything but their own. Each asking for a world outside the reductive frame of human-as-economic-unit, but proceeding from very different grounds and reaching very different conclusions. Perhaps it’s little wonder that the hand-wringing stance—how complicated—is the most we can hope for in our thinking spaces and our best journalism.
But: I’m dissatisfied with the wringing of hands. It’s not that I expect A.M.C.s to arrive just because one might wish. But I do want the courage to seek first principles, and not just the questions. There must be grounds for the positions we take, axioms to interrogate, ones that beg for an internal alignment among our ideas, our politics, our decisions. And, as a separate matter, I want to be unafraid to seek strategic, conciliatory identification of first principles that share some bedrock with those of others whose politics depart from mine. Not lockstep agreement—because agonistic pluralism is both important and necessary—but shared grounds nonetheless. Each of these tasks takes courage: looking in the face of fundamental ideals, and building coalitions where they may be found.