Hanna Herdegen, the current graduate research assistant for the NSF grant associated with this site, authored this blog post on the Maintainers website. It’s themes are close at heart to the work of Technology & Disability – and very worth the read!
Goffman’s discussion of stigma helps to illustrate the consequences of being marked as disabled, but does not fully explain how and why those kinds of judgments of social qualification/disqualification are made. Here, it is useful to look at organizational studies scholarship on dirty work: the kinds of occupations whose workers are socially ‘tainted’ by their association with dirt, death, and/or bodily fluids. Like disability, dirty work is often made to be spatially and temporally absent from society. Building maintenance happens at night, or in off-peak hours; county dumps and scrapyards are tucked away in rural areas, away from population centers (2).Hanna Herdegen
The fact is that there are certain bodies allowed to exist in popular stories about disability. There are set narratives, or narrative tropes, that disabled and ill bodies fit into—the inspiration, the overcomer, the sports hero, the warrior cancer child. Outside of these narratives, which act to consume rather than produce disabled lives and identities, disabled bodies disappear.
It’s not that disabled people cannot be inspiring or overcomers or warriors. It’s that, often, these are the only things they are allowed to be. It’s that there are aspects of disability/chronic illness that are painful, messy, joyful and normal that are not allowed to be normalized in the set narratives available.
There are individuals who are willing (and waiting, and needing) to tell stories about the everyday experience of disability and illness, but who cannot do so effectively because, frankly, people don’t want to hear it.
There are few symbolic spaces in which disabled bodies are allowed to exist, fully and unconditionally—and as a result, few material spaces in which existing as a disabled person does not require choices to be made between maintaining one’s body and maintaining one’s identity.Hanna Herdegen, “Maintaining Disabled Bodies and Identities: Disability as Dirty Work,” The Maintainers
There’s a second post from her in the queue over at the Maintainers, so hoping to share more soon.