an appendix to pearlofcivilization.net
“Even a tiny charcoal scratching done as a gesture to mark a person’s response to this epidemic means whole worlds to me if it is hung in public,” Wojnarowicz wrote. “Each and every gesture carries a reverberation that is meaningful in its diversity.”
Source: Learning how to live and die with long COVID – High Country News
Moving Toward the Ugly: A Politic Beyond Desirability | Leaving Evidence.
Many people assume that I identify as femme and even call me femme, but the truth is that “femme” has not felt like a term where I belonged nor was it a place I wanted to be. I rarely see femme being done in a way that actually challenges and transforms gender, rather than colluding in an alternative enforcing of gender. Many of the people in this room are more invested in being beautiful and sexy than being magnificent. Even something as small as the time I nervously asked a comrade femme of color friend of mine to wear sneakers in solidarity with me, instead of her high heels, because I didn’t want to be the only one and didn’t want to get chided from other femmes of color about my shoes (as so often has happened). She said “no,” but she (of course) “totally didn’t think there was anything wrong with wearing sneakers.”
How to be a Person in the Age of Autoimmunity
via Meghan J
These kinds of experiences are difficult to narrativize. There is no story arc. In “On Being Ill,” Virginia Woolf writes:
Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to light…it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature. Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia… But no; … literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear.
This is, of course, the romantic view. Sometimes it’s not true; sometimes I’m the same asshole I was before I got sick. But as Susan Sontag once wrote, “illness exacerbates consciousness.” As such, my life has been irrevocably changed by the experience of illness. There is a lot of shame associated with disease. Disease is not polite conversation, and at my age, a career—not wellness—is the expected goal.
I give voice to this period of my life not as an inconvenient period, but as a profound one worthy of being shared. I want to valorize my time in ways that have nothing to do with work, to say a big “fuck you” to every person at a dinner party who has ever pointedly asked me, “So…what do you do?” because I haven’t “done” much in a long time. The story I’m telling here is equal parts a processing of the trauma of illness and an exploration of how the body is treated under the regime of capitalism. Stories of illness like mine should not be kept away in beds and in hospital wards. They should be written so that we can understand the body as something beyond a sheet of plain glass.
Dating from the Margins: Desexualizing and Cultural Abuse
Understandably, who we are attracted to is a very sensitive topic for most of us. We want to believe our desires are our own, unshaped by the media, patriarchy, racism, ableism, transmisogyny, or other oppressive systems. This is even more challenging when one’s identity is based in ideas of activism, social justice and equality; We don’t want to feel like we’re upholding oppressive standards, or engaging in systems which sometimes violently desexualize marginalized identities.
Conversely, those who do not enjoy much dating capital face an incredibly challenging and vulnerable process when discussing desirability. You can’t help but wonder how much will be dismissed as sour grapes, or what judgements will be made about you to justify your undesirability in the minds of others.
A Black Crip’s Perspective on Fashion and Embodied Resistance.
Looking fierce may not transform systems that actively work against my body, but it has and continues to help me reconfigure space through self-definition.
OKCupid? Disability And Online Dating.
At first, I left my disability off my profile, and decided to speak of myself in extreme generalities, hoping to attract more people. After about two weeks, I realized that this wasn’t a suitable dating strategy. So I modified my profile, got specific and proudly self-identified as being on the autism spectrum. Within a twenty-four hour period, the number of messages I received daily (or even hourly) trickled to an absolute stop.
The more time I spent on OKCupid, the more I realized just how invisible and ignored the subject of disability was on there. The only real discussion of disability that came up for me was on one particular “match” question, which asked, “Would the world be a better place if people with low I.Qs were not allowed to reproduce?” I answered “No” and filled my explanation box with an angry screed about the evils of eugenics. The question turned out to be a useful barometer for determining who was worth my time. Anybody who answered “Yes” was automatically disqualified from entering my matches. But that was the extent of the conversation surrounding disability.
Even people who very obviously had some sort of a disability seemed to go out of their way to disguise the fact. I saw many people pass by my profile who were wheelchair users employing creative camera angles, forced perspective and other methods to disguise their use of a wheelchair. Mental health was only mentioned in the context of admonishments along the lines of, “I don’t want any drama from crazies (sic) message me only if you’re normal and stable.” To be disabled was to be invisible, to be mentally ill was to be undesirable.
