A while back I posted this on twitter: “Question for
#BRCA and #geneticcancer crowds: do you think deleterious mutations should be considered under the rubric of ‘disability’?” The answer came back a pretty resounding no.
Many of my twitter friends reacted against the term “disability.” Andrea from Brave Bosom posted a link to Aimee Mullins’s TED talk on disability in which Mullins describes looking up the definition of disability in her thesaurus and finding such synonyms as mangled, maimed, castrated, etc. Certainly, the term disability has been used to denigrate people in just the way Mullins’s discusses, but in recent years the word has taken on different meanings (not unlike the way “queer” has gone from being a homophobic slur to a reclaimed descriptor of GLBT identity). In retrospect, I should have defined my terms or explained my interest in the topic first–something that can be a challenge in 140 tweetable characters.
Like all nerds, I go into research mode when facing a crisis. When I received my deleterious test results, I immediately purchased a spate of BRCA+ guidebooks like Positive Results and Confronting Hereditary Breast and Ovarian Cancer. These books helped me understand my risk and my risk-reducing options, but I wanted to know more–much more–about the social, political, scientific, and historical contexts of BRCA mutations.
For a long time now, I’ve been reading widely in an effort to contextualize my experiences with HBOC. Science writing on genetics has helped me understand the mechanics of BRCA, but it has been less helpful at understanding sociopolitical issues. Histories of breast cancer and western medicine have helped me situate my family in relation to the medical industry, diagnoses, and treatments, but often give surprisingly short thrift to the discovery of BRCA1/2 and their implications. Feminist writings on breast cancer have been extremely useful, but also give BRCA mutations only glancing treatment. At the same time, the experiences of BRCA+ women cannot be neatly mapped onto that of the breast cancer survivor. In other words, I’ve found useful things to mull over across many fields, but certainly not a coherent framework.
My latest intellectual foray has centered on disability studies, an interdisciplinary academic field that has been gaining traction in the United States for the last 20 years. Here’s a definition of the field from Syracuse University’s Center on Human Policy, Law, and Disability Studies:
“Disability Studies refers generally to the examination of disability as a social, cultural, and political phenomenon. In contrast to clinical, medical, or therapeutic perspectives on disability, Disability Studies focuses on how disability is defined and represented in society. It rejects the perception of disability as a functional impairment that limits a person’s activities. From this perspective, disability is not a characteristic that exists in the person or a problem of the person that must be ‘fixed’ or ‘cured.’ Instead, disability is a construct that finds its meaning within a social and cultural context.”
Similarly, in her book Extraordinary Bodies, Rosemarie Garland Thomson notes that within the field “disability is defined not as a set of observable, predictable traits–like racialized or gendered features–but rather as any departure from an unstated physical and functional norm” (24).
Here, the term “disability” covers a range of heterogeneous conditions, some visible and some invisible, some continuous or chronic and others temporary. Disability studies takes an explicitly political perspective on the ways that some bodies are constructed as “normal” and other bodies are constructed as “abnormal.” (Here’s another definition from wikipedia).This approach interests me because I have been trying to think about BRCA mutations and HBOC as “social, cultural, and political phenomenon” since I received test results officially designating my body as aberrant.
The biggest question for me at this point is: how can disability studies as a field account for genetic mutants–like people with BRCA mutations or Lynch syndrome etc.–whose deviance from bodily norms is invisible (unlike a physical disability), but nonetheless psychologically, financially, socially, and politically overdetermined? If, as Thomson famously has put it, people with physical disabilities have “extraordinary bodies”–that is, remarkable or out-of-the-ordinary bodies–then how can disability studies account for people with extraordinary genes that may or may not present in physical disease? Or how can it account for BRCA+ bodies and experiences that deviate not only from normate bodies with functional tumor suppressor genes, but which deviate from highly conventional breast cancer illness narratives?
I have some inchoate thoughts about how BRCA mutations, HBOC, and other genetic predispositions may and may not make sense within a disability studies framework. This post is long enough as it is, so I’ll post those ideas at a later date