At first glance, the embryo-screening technique known as preimplantation genetic diagnosis (PGD) and the confederate flag seem to have little in common. But as a twelve-year old article by bioethicist and disability studies pioneer Adrienne Asch reminded me, both carry symbolic power as indicators of societal hierarchies and perceived human value.
PGD is used with in vitro fertilization to test eight-cell embryos for “serious” diseases like cystic fibrosis, Down syndrome, and Tay-Sachs disease before transferring them into a patient’s uterus. It’s also used to create “savior siblings” and to produce children of the sex that parents prefer. And one fertility clinic briefly offered it to control for cosmetic traits like skin complexion, hair color, and eye color.
The confederate flag – a lightning rod of debate following a Supreme Court ruling and the Charleston massacre – is viewed by some as a symbol of Southern pride and heritage and by others (a view with which I agree) as a symbol of a racist oppression, a relic that demonstrates that a cruel and painful history is alive and well.
The ongoing debate about both PGD and the confederate flag often positions intent as the sole arbiter of meaning. In other words, if I raise the confederate flag because I strongly believe in states’ rights, does the flag still serve as a symbol of racism? (This argument of course ignores the fact that the history of states’ rights is so deeply marred by racism that the two cannot be disentangled.) Or, if I opt not to implant an embryo because PGD reveals a high likelihood that the fetus would develop Down syndrome, can I simultaneously claim to believe that people with disabilities are entitled to lives as full and equal members of society? Do egalitarian beliefs about race or (dis)ability mitigate the flag or testing’s symbolic power?
But these questions, which frame the controversy as one about individual choice and intent, miss the mark. People and their decisions do not exist in a vacuum. The “Stars and Bars” cannot be removed from its history as the emblem for a region that fought to uphold a slave society, and which was later resurrected to signal opposition to civil rights. Similarly, prenatal testing in its various forms is a technology that identifies disability and disease – with an inherently blurred line between them – so that a pregnancy can be terminated.
Intent and expectations are thus embroiled in a racist and ableist context. In Asch’s words:
The flying Confederate flag tells people historically victimized by racist discrimination that racism and the history of racism is and was acceptable; enumerating a set of testable genetic diseases tells people who currently have those conditions that it would be better if prospective parents went to considerable lengths to prevent the births of children with those conditions.In other words, the complex, symbolic, historically-constructed meanings of the confederate flag and prenatal testing cannot be removed from the practice.
First-person accounts from Panama Jackson, a Black writer who has lived in Alabama and Georgia, and Marsha Saxton, a disability studies scholar, are telling. Jackson recalls that his high school friends would wear t-shirts emblazoned with the flag without meaning to offend him; they would politely carry on small talk and yet the flag:
Was there as a constant reminder that you’ve come only so far … there’s no way to get around that its use has now and will always be tied to white supremacists insistence on reminding Black folks to stay in line.
Jackson elaborated that the flag serves as a reminder that “progress comes with stipulations,” and that it displays – in t-shirt, bumper sticker, or belt buckle form – how much progress remains to be achieved.
In a similar way, the rights of people with disabilities have no doubt expanded since the start of the disabilities rights movement, but there’s a long way to go. Saxton notes that genetic testing reinforces the medical model of disability, which unequivocally views disabilities as conditions to be avoided at all costs. Saxton and other disability rights advocates point out, however, that the impairments the medical model finds strictly in biology are at least in part products of a society that stigmatizes physical differences and often resists accommodating them.
Prenatal and pre-implantation testing has become more and more routinized, and increasingly framed as the responsible and logical choice for parents wishing to give their future child(ren) the best possible chances in life. Saxton explains that “these technologies make us [people with disabilities] feel devalued as human beings.” What is more, genetic testing relays the message that “it is better not to exist than to have a disability … your family and the world would be better off without you alive.” With that being said, while abortion ought to be an individual decision that remains protected, it is impossible to separate that decision from a larger social context in which, as Saxton contends, people with disabilities are devalued.
Both the confederate flag and genetic testing, implicitly (or arguably not-so-implicitly) devalue the existence of certain populations who by no coincidence have experienced vast historical marginalization. That is, these are problems about systems of oppression. The #BlackLivesMatter movement reminds us that “black lives exist in at state of precariousness.” Racism, and anti-Black racism in particular, is not sewn only into a flag but into our culture, laws, history, geography, language, and criminal justice system.
Likewise, society’s devaluation of people with disabilities can be located in all of those same places, which might well be thought of as repositories for social norms and expectations. Again, this demonstrates why straightforward concepts like “choice” and “intent” are insufficient to capture the full extent of what is at stake in these debates.
Previously on Biopolitical Times:
Image via Wikimedia Commons.
Posted in Assisted Reproduction, Bioethics, Emma Maniere's Blog Posts, Genetic Selection, Race, Reproductive Justice, Health & Rights
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