Rage, wrath, and rant. This was my visceral response to Emily Rapp's recent piece in Slate, in which she uses her son Ronan and his suffering at the pitiless progress of Tay Sachs disease to mount a political defense of prenatal testing and the targeted abortion of disabled fetuses, contra Rick Santorum. Oh, how I seethed.
That I identify with Rapp on a number of levels only sharpened the response. We're the same age, we share a cultural idiom, and, based on her online oeuvre, Rapp enjoys the rhetorical posture of contrarian bearer-of-hard-truths as much as I do, even if it distorts our thinking on occasion. Above all, we share the soul-eating experience of watching a child die slowly. I, too, have watched a beautiful boy descend through terrible pain, seizures, blindness, paralysis, and then into extended unresponsiveness and finally death. It wasn't Tay Sachs that seized my brother Jacob at age 3, it was brain cancer. He died when I was 15.
I came back to the essay this week with a clearer head, and I found that it rewarded a calmer reading. Rapp brings a fruitful double perspective to the issue, as both the mother of a disabled child and a disabled adult herself. Hers is an important piece, and an illuminating one.
It's important and illuminating not, however, for the conclusions she reaches, which are completely predictable from her political priors. It's illuminating in its perfect capture of the contradictions inherent in liberalism's engagement with the morality of human life and death. Twinned with science, liberalism—in the philosophical sense, not the political sense, though both are in play in the piece—has a vexed relationship to moral assertion. It professes neutrality on questions of private morality, but it often lacks the courage of its value-free convictions and covertly borrows values-language from other philosophical traditions to shore up its emotional purchase. Some argue further that liberalism must smuggle in religious values to provide content for its technocratic structure, or risk devolving into empty procedure. The result can be a rhetorical muddle of value-free claims made palatable by disguised traditional values.
Rapp's piece demonstrates this incoherence, and does so all the more powerfully for its fine writing and poignant story. Three contradictions, in particular, structure the essay.
- Value-free procedure vs. absolute truth. The article argues in favor of more prenatal testing, on the basis that testing yields useful information for parents about the health of their unborn child. In classic liberal fashion, Rapp characterizes information per se as neutral and inert: "Prenatal testing provides information, a value-less act." Information is sharply set apart from moral Truth, which under Rapp's logic should be confined to a private sphere of individual preference and consumer-like choice: "I believe that it is a woman's right to choose what to do with the information that attaches value and meaning." The result, in her view, should be a de facto moral relativism governing public debate about our most personal human choices, with values entering the equation only at the level of private choice, a privileged but sharply limited category. Liberalism itself need not—indeed, cannot—claim access to absolute truth.
Rapp's argument here is entirely consonant with classical liberalism, and she is certainly in distinguished company when she makes it. But she lacks the courage of her own conviction. Tellingly, she chooses to anchor the emotional introduction of the essay on the rhetorical platform of "absolute truth": "I don't regret a single minute of this parenting journey, even thought I wake up every morning with my heart breaking . . . This is one set of absolute truths." But these are not "absolute truths," of course, under any reasonable definition of that term. They are subjective personal experiences and interpretations, and under her own logic she is entirely free to exercise them fully within the strictly-defined limits of her private life. Personal experience can be many things, but it can never be absolute truth—except, it appears, when liberalism needs something with more rhetorical power than "personal preference" to shore up its claims.
- Self-determination vs. compassionate service. The sovereignty of the individual is one of the philosophical foundations of liberalism. We are free to stand nakedly under the banner of individual self-determination and self-interest, as long as that interest does not unduly infringe on other persons' right to self-determination. Free personal choice is the only criterion for legitimacy in the private sphere. And Rapp adopts this posture, some of the time. She reflects on her own mother's experience with bearing a disabled child, imagining the outcome if she had had access to prenatal testing: "Regardless of what she may or may not have decided had she been possessed of all the information prior to my birth . . . it would have been her choice to make." The content of the choice matters not at all as long as the integrity of the procedure is guaranteed.
(I would argue that Rapp doesn't take her argument here far enough: personal choice is in fact a more robust category than she allows, especially where women's reproductive interests are concerned. Rapp's mother did indeed have a choice whether or not to parent her disabled child: she could have institutionalized the child, as many women did in that era. Throughout history, women have made personal choices to protect their reproductive interests, mostly in the form of voluntary abandonment, neglect, or relinquishment of imperfect or unwanted children. As a society, we rightly see most of these choices as repugnant today. Personal choice can be ugly.)
Yet Rapp is uneasy with naked self-determination, so she must introduce a more palatable cover motive for her own hypothetical choice to abort: compassionate service. "I love Ronan," she writes, "and I believe that it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering." Not surprisingly, Rapp borrows the language of love and service from Christianity, historically liberalism's richest source of borrowed values-language. She does this even though it seriously weakens her argument: introducing the notion of compassion in conjunction with the violence of abortion only serves to highlight that jarring juxtaposition and gesture toward the monstrous extremes to which liberalism has been led. But such is the emotional poverty of liberalism that it must import values even against its own rhetorical interest.
- Quality of life vs. fetal suffering. The most persistent tension in Rapp's essay is the contrast between "quality of life" and suffering: the quality of life she wishes for her son, and the suffering she sees him endure daily. I know so well the singular hell of watching a child suffer with no hope of reprieve, and I offer my heartfelt sympathy to Emily Rapp. I have shed tears thinking of her son's suffering, and her own suffering. Tay Sachs is an obscene tragedy, stealing a child's future and consuming his present.
Yet my sympathy also sharpens my affront at the contradiction in Rapp's position. On the one hand, she offers a typically liberal vision of "quality of life," privileging what we have come to accept as the markers of personhood itself: individual subjectivity, the ability to make free choices and experience personal identity, to think rationally and to form intentional relationships based on mutual consent, and a hedonistic valuing of pleasure. Ronan will never have these capabilities, and in this sense he will never be a full person in the liberal sense of the word. Yet we know that he suffers. Ronan is the living embodiment of the truth that a human who is not yet or who is no longer a full person still suffers, and that that suffering has moral status. Ronan's lived experience, observed in excruciating detail by his mother every day of his life, rebuts the claims that fetuses cannot suffer as they are destroyed, because they are not yet full persons.
Emily Rapp is a loving mother, of this I have no doubt. She has given her son a life of love, joy, and dignity even in the short time he is here. I offer her my sympathy and my admiration for her care and sacrifice on Ronan's behalf. If liberalism provides an imperfect conceptual vehicle for understanding moral choice, the fault does not lie at Rapp's feet. I wish her the best in the coming year. I will weep with her if she chooses to share the news of Ronan's death.
3/13/2012 4:00:00 AM