Material Disability: Creating New Paths for Disability Studies

Born in the activism of the 1960s and contoured by the postmodern, post-structural shape of the academy, disability studies has followed the identity-driven path pioneered by gender, race, and cultural studies. In a social model, the concept of disability derives not from a particular impairment but from an ableist culture and its limits. The frequently cited example goes something like the following: although paraplegia is a physical, bodily impairment, it becomes a disability only through the social environment—the building without an elevator, or the sidewalk without a curb cut. While such a social model works especially well for an impairment like deafness, with a rich language and culture, it cannot account for the experience of aging, the simultaneously cultural and biological phenomenon of Tourette syndrome, or the genetic agency of Huntington’s disease. The social model elides disability’s materiality—its thereness, its pain, its enmeshment in other, frequently competing, agencies.

Forced sterilization, institutionalization, and euthanasia, however, have constructed disability studies into a field especially suspicious of a naïve faith in materiality. The term materiality conjures an omnipresent history in which medicine erases the subject by overemphasizing the body, and literature sacrifices the subject by investing disabled bodies with the burden of reality (in a world of floating signifiers, only the disabled body remains static, True, un-deconstructable).¹ And while theorists like Tobin Siebers have worked to provide a more nuanced understanding of pain’s relationship to disability and disability identity, Siebers also argues that individual pain or “a feeling of private suffering” must be translated “into a theoretical position, a political identity,” and political action (193).² In other words, materiality must be abandoned. We need to cast off and out materiality to form an identity, cohere as a collective, and effect change.³

Yet, I want to argue that materiality should not be avoided in theoretical accounts of disability, that identity claims need not abdicate materiality for political efficacy. Rather, science studies and new materialism offer a language and an ethics with which to account for a nuanced and dynamic materiality for the inseparability of body and self, of disease or disability and self, even microbe or gene and self. Though disability studies has resisted this inseparability—understandably, given how stigmatic bodily difference remains⁴—the lived experiences of illness and disability attest not only to the liveliness of a gene or a microbe or a cell and to the alienation such competing agencies produce in a subject but also to how such agencies overwhelm and radically redefine what counts as a subject. To this end, I argue for a new materialist, posthumanist disability studies that reminds us of three ideas: first, that materiality is never so simple, so static, or so reductive as its representations in medicine and literature; second, that materiality is always inseparability, a congealing of sometimes competing agencies; and, third, that this inseparable materiality challenges static definitions of “normal” and “natural.”

Undoubtedly, a posthumanist disability studies seems paradoxical. After all, disability studies is a humanist enterprise that aims to rehumanize abject others dehumanized by oppressive and exclusive notions of what constitutes “normal” and “natural.” Posthumanism, however, challenges the very logic of “the human.” Yet, if disability studies teaches us that we can no longer use “natural” or “normal” to organize bodies and people, then privileging the “the human,” especially in a field that challenges an Enlightenment legacy of rational, self-contained, and self–possessed humanity, seems contradictory, even dangerous. A posthumanist disability studies does not elevate the microbe above the human nor minimize the lived experiences of illness or disability. Rather, a posthumanist disability studies considers the theoretical and material possibilities of reanimating disabilities, diseases, and disorders. To work through these possibilities, I want to use Huntington’s disease as a case study; I’ll begin with a more conventional historicization of Huntington’s, then work towards a posthumanist reading of the genes that produce it.

Huntington’s disease is a hereditary, degenerative disorder that slowly impairs the nervous system. Although bearers of Huntington’s carry the genetic mutation all their lives, the disease typically...