Why Disability Studies Matters

Under the surface most stories have some relation to disability. Moby Dick is a disability narrative as much as anything else and we know that Abraham Lincoln suffered so keenly from bi-polar depression he frequently went without sleep for days at a time and that one such episode preceded his signing of the Emancipation Proclamation. Accordingly it comes as no surprise to discover a thread about life with a hidden disability in the story of Adam Swartz, the information visionary who committed suicide last January. 

 

In an excellent piece for the New Yorker by Larissa MacFarguhar on Swartz’s struggles we read of his private pain from colitis, his bouts of frequent depression, and his struggle to make sense of his life by means of blogging. The latter was, it seems, not so much a method of overt connection in the manner of the best disability blogs but more a cris de coeur posted in public space. MacFarguhar writes:  

 

He didn’t think of his blog as published writing, exactly, nor was it a private journal, since it was accessible to anyone. It was something in between. He wrote about things in his blog that he didn’t tell his friends—about his depressions, about his ulcerative colitis. It was not clear who he imagined his readers to be. 

 

It is not clear to any blogger who his or her readers might be, but disability activists tend, in general, to speak both for themselves and others, a line of public discourse that demands emotional candor and a probative style. In Swartz’s case, blogging was neither confessional nor communitarian but something in-between. I think his indeterminacy is tragic and his story underscores why disability studies matters. As Rosemarie Garland-Thomson and Brenda Brueggemann have written, disability studies demands the integration of embodiment and identity into a discourse on human rights: 

 

The study of disability in both literary criticism and the humanities in general is a grass-roots scholarly movement that has emerged from the academic turn toward identity studies, an awareness of the need for diversity in scholarly topics, and the recognition that disability is a political rights and integration issue. Disability studies in the humanities seeks to overturn the medicalized understanding of disability and to replace it with a social model of disability. This view defines “disability,” not as a physical defect inherent in bodies (just as gender is not simply a matter of genitals, nor race a matter of skin pigmentation), but rather as a way of interpreting human differences. In other words, this critical perspective considers “disability” as a way of thinking about bodies rather than as something that is wrong with bodies. Within such a critical frame, disability becomes a representational system more than a medical problem, a social construction rather than a personal misfortune or a bodily flaw, and a subject appropriate for wide-ranging intellectual inquiry instead of a specialized field within medicine, rehabilitation, or social work. Such a critical perspective extends the constructivist analysis that informs gender and race studies.  This approach to disability looks at such issues as changes in the way disability is interpreted over time and within varying cultural contexts; the development of the disabled as a community and a social identity; the political and material circumstances resulting from this system of assigning value to bodies; the history of how disability influences and is influenced by the distribution of resources, power, and status; and  how disability affects artistic production. It also insists on the materiality of the body–its embeddedness in the world–by focusing on issues such as equal access for all, integration of institutions, and the historical exclusion of people with disabilities from the public sphere. 

 

Swartz, for all his genius with the digital commons couldn’t conceive of blogging about pain and the representational oppressions of embodiment as a larger struggle. The development of disability as a social identity is not a trivial matter for each time a man or woman with hidden illnesses claims political language he or she will not be defined by others.