This is the first of two interrelated posts by the disability studies scholar Hanna Herdegen who is pursuing a PhD in Science, Technology, and Society at Virginia Tech.
When I was first diagnosed with POTS, my cardiologist suggested that I should always lie down immediately upon feeling faint, no matter where I was.
“What, like in the middle of the street?” I asked.
“Well, maybe not in the street. But on the sidewalk, sure.”
I made a face at him. Really?
“People will just walk around you,” he said. “Don’t worry about it.”
I had figured out on my own that lying down helped alleviate the symptoms caused by my racing heart and dropping blood pressure—but lying down ‘always’ and ‘immediately’ seemed a bit extreme.
For one thing, feeling faint happened a lot more frequently than actually fainting did. If I were to lie down every time I felt faint, I would spend most of the day on the floor.
And for another, I was less worried about dealing with people stepping on me and more worried about dealing with people staring at me. I had a difficult time imagining myself actually lying down in the middle of the sidewalk on a semi-regular basis.
If the choice was simply between lying down and passing out, the decision would be easy: lie down.
But it’s not that simple.
I think a lot about the kinds of bodies that are allowed in certain spaces. I don’t just mean whether a body can physically enter a space—though that is certainly an issue. I also mean whether certain kinds of bodies are thought to be organic to a space, and what kinds of effects that judgment has on the ease of existence for that body.
Many disabled people are put into positions where they must deny certain pieces of themselves in order to exist in public—and even private—spaces. There are trade-offs. It is often necessary to sacrifice physical comfort for social comfort, and vice versa.
If I were to lie down in the middle of the sidewalk, I might prevent or decrease the severity of a POTS episode, but I would also have to deal with staring and comments from passers-by, as well as with the concern and awkwardness of anyone who might have been walking with me at the time. While lying down might save me physical energy, dealing with the reactions of others takes social and emotional energy that I don’t always have. Dealing with these reactions repeatedly over time, every time I have to do something out of the ordinary to maintain my body, is exhausting beyond a situational level. That exhaustion, which I would describe in terms of tension between the demands of maintaining a disabled body and those of maintaining a disabled identity, is what makes the decision between lying down and passing out difficult.
So, where does this tension come from?
I think part of it comes from the fact that disability is supposed to be socially invisible. Because of this, there are consequences attached to actions, like lying down in public, that make it visible.
In his 1963 book Stigma: Notes on the Management of Spoiled Identity, Erving Goffman talks about stigma as a social disqualification, referring to the way stigma acts to ‘spoil’ identity by marking a person as unfit for full participation in society (1). Stigma needs to be made known in order to act as a disqualifier; sometimes this happens in conversation, but many times stigma is communicated symbolically. In the case of disability, stigma symbols may be physical markers like an uneven gait or atypical eye contact, or items like wheelchairs and white canes. (It is important to note that people who need these devices have varying levels of choice in whether or not they use them, and therefore varying levels of choice in whether they are marked and disqualified.)
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).
Recent work in this field emphasizes the importance of acknowledging both the material and symbolic aspects of dirty work. It is not only the idea of dirt that taints dirty workers, but also the physical evidence of dirt on their bodies. Dirt stains fingers and leaves odd smells on clothing, and this evidence can be difficult to remove in ways that reflect and reinforce the difficulties dirty workers face in removing the social taint associated with their work (2).
It seems to me that the stigma attached to disability comes from similar sources of social taint, and that stigma symbols act as such because they imply proximity to those sources of taint.
Calling disability ‘dirty work,’ in reference not only to the fact of having a disabled body/mind, but the act of being disabled in an ableist world, has certain resonances. It helps explain the intertwined and often antagonistic nature of maintaining both a disabled body and a disabled identity. Like dirty work, disability is both material and symbolic in nature—which, to put it simply, I would align with bodies and identities, respectively. The act of being disabled requires management of both. As noted above, managing the material nature of disability— maintaining a disabled body by using a wheelchair, modifying one’s gait to accommodate hip pain, lying down in public spaces, etc.—produces stigma symbols that associate disabled people with sources of social taint.
Managing the symbolic nature of disability—maintaining a disabled identity—has its own difficulties. Of course, one option is to try and behave in a way that does not produce stigma symbols. However, this is physically taxing…and often physically impossible.
Another option is to try and manage social taint by reframing the sources of taint in a better light. Dirty workers do this by “construct[ing] meanings that afford positive value to dirty work” (2)—in other words, by producing counter narratives. The grime and blood of butchery, for example, gets recontextualized as markers of a trade that is connected rhetorically to tradition and skill; dirt under fingernails becomes a symbol of hard work, and of the ability of a person to provide for their family (2).
However, the symbolic space in which to manage a spoiled identity is not available to disabled people in the same way that it is to dirty workers—for the simple reason that there are very few positive, culturally valent counter narratives about disability.
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.
1) Erving Goffman. 1963. Stigma: Notes on the Management of Spoiled Identity.
2) Ruth Simpson, Jason Hughes, and Natasha Slutskaya. 2016. Gender, Class, and Occupation: Working Men Doing Dirty Work.