how people look at me after i show symptoms of my disorder
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how people look at me after i show symptoms of my disorder
people with tourettes/tics/ anything that causes involuntary movement/noises arent fucking obligated to isolate themselves. our existence isnt a disruption. do you know how fucking humiliating it is to grow up taking tests in the hallway because your teacher sees you as a distraction simply for existing? i will go in public. i will go to libraries. i will go to stores. i will go wherever i want and you cant stop me.
IF YOU EXPECT PEOPLE WITH TICS TO NOT GO IN PUBLIC, YOU ARE ABELIST
Little thing that I made about my experience with tourettes (:
I've seen a lot of people talk about whether touretts is a visible or invisible disability. And I think it's both, tourette's/ tics are such a different experience for everyone, that we should be looking at this from a case-by-case perspective. Which is why I think saying both is valid.
Sometimes I feel like my tourette's is an invisible illness, because people have a hard time spotting it, or I go through periods of not having any tics.
But other times it feels like a very visible illness just from the severity and obviousness of my tics.
Definitely goes both ways
One of the most validating things I experienced as a kid was growing up in a tight-knit area and having a sub teacher yell at me for vulgar or loud tics, and multiple people yelling back, "SHE HAS TOURETTE'S".
Good days.
"do you tic in your sleep" literally how would I know
hey, i don't want to put you out or anything, i was just wondering if like off the top of your head if you knew any disability studies articles/books/whatever that center (or even just feature) tic/involuntary movement disorders?
so the answer to this was pretty much no but i spent a bit of time poking around and turned up this 2023 undergraduate honors thesis (link) by a student with tourette’s which seems like a solid starting point for going down the citation rabbit hole!
that piece is “The Embodied Performance of Tics and Tourette Syndrome in the Academic Environment” by Benjamin Allen; i’m only ~1/4th through rn but they argue for a continuum of ticcing + criticize the diagnostic system so i’m comfortable reccing it on that front! the (non-medical) tic-related works cited there are:
Buckser, Andrew. “Before Your Very Eyes: Illness, Agency, and the Management of Tourette Syndrome.” Medical Anthropology Quarterly, vol. 22, no. 2, 2008, pp. 167-192.
Buckser, Andrew. “The Empty Gesture: Tourette Syndrome and the Semantic Dimension of Illness.” Ethnology, vol. 45, no. 4, 2006, pp. 255- 24. https://www.jstor.org/stable/20456601.
Curtis-Wendlandt, Lisa. “Time and the Tic Disorder Triad.” Philosophy, Psychiatry, & Psychology, vol 27, no. 2, 2020, pp. 183-199.
Curtis-Wendlandt, Lisa, and Jack Reynolds. “Why Tourette syndrome research needs philosophical phenomenology.” Phenomenology and the Cognitive Sciences, vol. 20, no. 4, 2021, pp. 573-600.
Miller, James. “The Voice in Tourette Syndrome.” New Literary History, vol. 32 no. 3, 2001, pp. 519-536. Project MUSE, doi:10.1353/nlh.2001.0039.
Trubody, Ben. “Ticced off: An Interpretative Phenomenological Analysis of The Experience of Tourette’s Syndrome.” Journal of the Society for Existential Analysis, vol. 25, no. 2, 2014.
i also searched a handful of disability studies journals for a variety of keywords (movement disorder, tic, tourette’s, involuntary movement, chorea, huntington’s) but didn’t turn up much unfortunately, so all but the first of this next list include someone with tics and/or involuntary movements rather than being about moving involuntarily.
haven’t read these so i can’t speak to the politics / quality (although i’ll make a post if i’m able to read more) but here’s what seemed potentially relevant! also if anything is paywalled please don’t give T&F your money lol, try SciHub or if you can’t find something i can ask around for somebody with institutional access!
Cultural Differences in Reactions to Tics and Tic Severity (2021)
Using virtual reality to implement disability studies’ advocacy principles: uncovering the perspectives of people with disability (2023)
I had every right to be there: discriminatory acts towards young people with disabilities on public transport (2020)
From comedy targets to comedy-makers: disability and comedy in live performance (2015)
From the Case Files: Reconstructing a history of involuntary sterilisation (2010)
i also want to mention “Movements of the Uncontrollable Body Part Two” by Bronwyn Valentine (2019), a creative writing piece about her experiences of embodiment + ableism with spina bifida that i first read pretty soon after it was published & went looking for after developing my movement disorder a year ago because it was so impactful. @fndportal also has some incredibly vital work.
also if you haven’t already read Rosemarie Garland-Thomson’s Staring: Why We Look, it’s not specifically about involuntary movements but definitely a core text for theorizing any visibilized disability.
i hope some of that is helpful!! if anybody checks any of these out i’d love to hear your thoughts/critiques! all the best to you & i hope these offer some resonance with + understanding of your experiences 💓💓