Earlier this summer a group of scientists headed by Wei-Hsi Yeh and affiliated with Harvard, MIT, Boston Children’s Hospital and the Australian Royal Children’s Hospital published a paper in Science Translational Medicine entitled “In vivo base editing restores sensory transduction and transiently improves auditory function in a mouse model of recessive deafness.” Despite the typically terse technical title, the paper is a breakthrough in curing infant deafness. And that’s where, apparently, the problem starts.
The study uses a gene-editing tool called CRISPR 2.0 which, eventually, could lead to reversing hereditary deafness in people by way of a single injection — though we are far from that accomplishment, and CRISPR technology does come for now with uncertainties that raise reasonable ethical concerns.
But those concerns aren’t what we are talking about here. I was honestly stunned by an article by Sarah Katz published in Discover magazine that accuses the researchers in question of “audism,” which is defined as “the belief that people with the ability to hear or to emulate those who can hear are superior.”
Katz begins the article with what is by now a standard phrase in identity-based discourse: “As someone who was born deaf…” This is meant to imply that she has a special status that allows her to talk about deafness not just as someone who has experienced it, but on behalf of an entire class of people, the deaf community. (It also implies that people outside such community have less of, or no right at all to speak on the matter, since they haven’t experienced it.)
But as ethicist Anthony Appiah has pointed out in a New York Times editorial that ought to be mandatory reading in colleges: “this now ubiquitous formula (‘as a such-and-such, I…’) … typically, is an assertion of authority: as a member of this or that social group, I have experiences that lend my remarks special weight.”
The problem is, Appiah continues, that “because members of a given identity group have experiences that depend on a host of other social factors, they’re not the same. … Having an identity doesn’t, by itself, authorize you to speak on behalf of everyone of that identity.”
Appiah goes on to consider a number of illustrative examples, and the reader is warmly encouraged to read the full article. It’s well worth your time. The op-ed concludes: “Because people’s experiences vary so much, the ‘as a’ move is always in peril of presumption. … Because members of an identity group won’t be identical, your ‘as a’ doesn’t settle anything. … So we might do well to ease up on ‘as a' — on the urge to underwrite our observations with our identities. … Here’s another phrase you might try on for size: ‘Speaking for myself…’”
Indeed. I wish Katz had read and taken to heart Appiah’s advice. Regardless, what, exactly, is Katz’s problem with the CRISPR study? She says that the researchers’ efforts “build on the assumption that deafness needs a cure. It does not. Though our dominant cultural view of deafness needs a fix.”
As a biologist I was more than a little surprised by this statement. Deafness is a disability with respect to normal human standards of health. I don’t mean “normal” here as in “superior” (the inflammatory word used by Katz), but simply as within the statistical range of anatomical and physiological functioning of a human being, an evolved member of the primate species known as Homo sapiens. This isn’t an opinion, it’s a fact of nature.
Consequently, it ought to be no more controversial than to say that having two lungs is “normal,” or that having a body temperature in the range of 36.5–37.5 °C is “normal.” There is no evaluative implication that people with one lung, or with a fever, are “inferior” to others. But there is an implication that, if possible, those people should be helped — with a lung transplant, or simply by taking some anti-inflammatory medication. Nobody, I wager, would then accuse the doctor of “lungism,” or “feverism.”
Of course, the situation of deaf people is more complex, because some of them do participate in a particular culture (as distinct from people with one lung, or with fever), a culture that has its own languages (American Sign Language and Cued American English, among others). And deaf people really do experience discrimination at the hand of a society that is only partially concerned with disabilities (despite the passage, in the US, of the Americans with Disabilities Act of 1990).
These two factors — the existence of a distinct enough subculture and the undeniable issue of discrimination — do imply that not every parent of a deaf child might want to take advantage of the type of research exemplified by the Yeh et al. paper. And it should be their right to exercise their judgment (though the situation is complicated when we consider the rights of the child, who obviously cannot speak for herself).
However, to go on and launch accusations of “audism” is both unnecessary and reckless. It immediately, for one thing, puts a stigma on those deaf parents who may want to try the technique out, having reached the decision that, on balance, their children’s lives will be easier or more fulfilling if the infants were to regain the ability to ear. That’s why Katz should follow Appiah’s advice and replace “speaking as…” with “speaking for myself…”
Instead, Katz draws for her argument on a false dichotomy, a stark opposition between what she calls the medical model (deafness is a disability) and the social model (the problems incurred by deaf people are the result of a discriminatory society). But there is no reason on earth to see those two as mutually exclusive: one can readily recognize that deafness is a disability, and that at least some of the affected people would rather have it corrected, at the same time as one can legitimately fight — both on legal and educational grounds — the stigma that leads to discrimination.
The case of audism is just one example of a highly unfortunate tendency, of late, in public discourse to draw sharp lines separating “good” and “evil” people, a tendency that has done nothing to encourage open dialogue and democratic discourse. If you are even cautiously critical of the policies of the Israeli state you will likely be branded as antisemitic; if you dare criticize aspects of modern Islamic culture you are an islamophobe; if you question anything about the complex issue of transgender rights you are transphobic. And so on and so forth, the list is very long. (Just for having mentioned these examples here I may be accused simultaneously of antisemitism, islamophobia, and transphobia!)
This just doesn’t help. And in fact undermines not only the frank exchange of ideas that is absolutely crucial for the survival of democracies, but hurts a number of people, and fractures what would otherwise be strong political alliances on the liberal-progressive side. Which is how we got Donal Trump in the first place.
So let’s all pause and take a breath. Let’s recognize that other people might have good, rather than evil intentions, even when they are mistaken. And moreover, that they may not, after all, be mistaken. Nobody is infallible, nor does anyone have a monopoly on truth, ethics, and so forth. And above all, let’s check ourselves the next time we are tempted to say “as a …” and replace it with the much more accurate and modest “speaking for myself…”