Maintaining Disabled Bodies and Identities: The Body as Evidence (2)
This is the second of two interrelated posts by the disability studies scholar Hanna Herdegen who is pursuing a PhD in Science, Technology, and Society at Virginia Tech.
“What have you got in there, rocks?”
I’ve gotten comments on the weight of my backpack since I was old enough to wear one. When I was in grade school, it was because I’d carry half a library’s worth of books around with me all day. After I was diagnosed with a chronic illness, it was because I carried half a hospital’s worth of medical supplies.
Although carrying bottles of pills is as normal for me as carrying a tube of lip balm, it is noticeable how many more people will stop and stare when I pull the former out of my bag.
In part one of this series, I talked about how judgments concerning the suitability of certain bodies to certain spaces can make it challenging to exist in public as a disabled person. Part of this comes from difficulties faced in normalizing the maintenance of disabled bodies due to the lack of culturally-valent counter narratives about disability.
In addition to the material and symbolic issues of access discussed in the previous article, the task of producing counter narratives in public space is complicated by the fact that disabled communities are spatially dispersed and that disability and/or illness may prevent individuals from being out in public at all. Because of this, public dialogue about disability often occurs in mixed company (i.e. between a disabled person and a nondisabled person), or among nondisabled people alone, which makes productive discussion difficult—and which, I would argue, is a significant factor that prevents counter narratives from gaining cultural valence.
There are, however, alternative routes for producing counter narratives. Online platforms can mitigate some of the aforementioned complications, making conversations within disabled communities easier and facilitating the wide-spread sharing of disabled perspectives.
Of those platforms, YouTube seems to be particularly viable for this kind of meaning-making. The platform gives disabled people the space in which to exist without compromise—the space in which to tell stories about their experiences that do not fit into popular narratives about disability. Significantly, the visual element of YouTube video allows disabled vloggers to use their bodies as evidence of their experience. This affordance becomes especially important to people with invisible chronic illnesses whose lived experience of illness tends to be disbelieved by the medical community, the general public, and members of their own families because their bodies do not fit those found in the acceptable disability/illness narratives.
The “What’s in My Bag” Tag
‘Tags’ or ‘tag videos’ are a memetic genre of YouTube video in which a content creator does a thing (for example, in an “Accent Tag” video, the creator reads a prescribed list of words in their native accent) and then invites other creators to do the same. In a “What’s in My Bag” tag video, creators go through their bags, pulling out items one-by-one and talking about them on camera. While the tag originated in the mainstream ‘lifestyle’ vlogging community, it has been co-opted by disability/chronic illness vloggers in interesting ways.
When I was first diagnosed with POTS, I stumbled across a YouTube video of a girl with my condition going through her purse—pulling out a compact mirror she had stolen from her sister, a makeup brush and foundation powder, but also her feeding tube pump and a gift card to Wendy’s that was “useless” because she had lost the ability to eat by mouth. She was doing a version of the “What’s in My Bag” tag—but “POTS Dysautonomia style.” At the end of the video, she issues a statement to her viewers:
“I’d like to challenge all you other girls out there who have POTS or Dysautonomia or any other chronic illness: what’s in your purse? And how different is it from what’s in a normal girl’s purse?”
What I find particularly compelling about the “What’s in My Bag: Chronic Illness Edition” tag is twofold: 1) that these young women had co-opted a narrative device originally used by mainstream beauty/lifestyle vloggers to help describe elements of the illness experience that would not normally be considered beautiful or fit for ‘lifestyle’-type content and 2) that there is a distinct awareness among many of the vloggers that what they have in their bag is different from what would be ‘in a normal girl’s purse’—and that this is the interesting part of the video.
The items pulled out by the “chronic illness edition” vloggers are different in multiple ways. There’s the obvious: not many nondisabled people walk around with feeding tube pumps, pulse oximeters, and blood pressure cuffs in their bags. There are also items which may seem ‘normal’ to carry in a purse, but which are actually used as part of illness management: hand sanitizer for prevention of cold/flu in immune-challenged bodies, sweaters for keeping warm when the body cannot adequately regulate its temperature, snacks for low blood sugar/low blood pressure. Finally, there are ‘normal’ items which might seem out of place in a bag: multiple bottles of Gatorade for dealing with blood pressure issues, blankets or yoga mats for lying on the floor in public places.
I find it useful, here, to conceptualize bags/purses as ‘maintenance kits.’ We carry around make-up, snacks, drinks, entertainment, etc. in our bags, all items we use to maintain our physical or emotional health. Looking at bags this way helps to highlight the ways in which judgments about the suitability of bodies—and of body maintenance—to spaces are made. We can see, in the items pulled out of the bags and in the stories told about them, that 1) there are lines drawn between the kinds of body maintenance that are acceptable or ‘normal,’ and the kinds that are not and 2) that these distinctions are largely arbitrary. Nondisabled people perform essentially similar body maintenance without facing similar social consequences. A granola bar in one bag can perform the same kinds of body maintenance as a feeding tube in another.
Perhaps most significantly, at the same time that the videos draw out difference, they also do what popular narratives of illness and disability do not: allow space for disabled/chronically ill people to create meaning around the material and symbolic circumstances of illness—space in which the everyday experience of illness is not only normal but is in fact positive evidence of existence.
This is Part 2 of a two-part series on maintaining disabled bodies and identities. To read Part 1, click here.