crippleprophet
stay sick! don’t get well!
Mac/Vesper | 25 | ze/zem or any pronounsminors please filter “minors dni” | icon by @systemgender
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link to the poem
hey anon it’s been 2 1/2 years but if you’re still around i want you to know this ask continually changes my life. it restores my soul in a way i may never have words for. i return to rest under it when i’m sore with dysphoria for my identity as a femme —
i struggle a lot with the limitations on my clothes due to living in an ableist & fatphobic society, my hair & accessories due to my fatigue & nerve pain, etc etc, & my stone/femme is often invalidated on the basis of my gender & sexuality (as if i have a faggotry separate from stone, a man-ness separate from femme)
but like. whether those words [would have] mean[t] anything to you or not — & i’m realizing as i type this that i was still 2 months out from claiming high femme myself when i answered this ask — you wrote my gender to me before i knew it myself. not just the achingly lovely image of a lipstick print which opens, although god that’s the closest i’ll ever have to doctrine, but the idea that my desire could imbue love, the potential to (co)create a consensual gaze that through some queer thermodynamics makes pride & lust possible with its heat —
that’s lifesaving shit. not for everybody, but it certainly has been for me.
you know that often-giffed scene from fleabag s1 where she says she doesn’t know what to do with all the love she has for her dead mother, & her best friend says i’ll take it, you have to give it to me, it sounds lovely? i’m so glad you got the lust i couldn’t give to the object of that poem.
i must say "jesus fuck i want my mouth around that scar" is a line that's been in my head for so long since i've read it. i hadn't fathomed that kind of wanting over my crip body before, reading it felt like a kiss mark right on a sealed letter and it opened it right up. i'll literally catch my surgery scar in the mirror now and smile over it. my bday (20s...wahoo) is coming soon and i must to pick an outfit to show it off, it's a nice scar, your poetry imbued it w/ absolute love. i don't get this feeling anywhere else but this community ♿💗 i hope all is so very well
OHH i cannot describe how very much this means to me, this is the pinnacle of what i want my poetry to do & such an incredible message to receive. your crip body is worthy of being wanted!!! and i’m so so honored to have had a part in your realization of that <3 <3 <3 i hope you have an absolutely fabulous birthday and a kickass outfit, so much love to you 🖤💕💕
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Navigating a college campus in a wheelchair should be an Olympic sport
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Hi! I've written a disability-centric fanfiction that took some inspiration from your poem that begins with "Jesus fuck I want my mouth on that scar" (a long-time favorite of mine!), including borrowing your phrasing almost word-for-word in one sentence, and I was wondering what your feelings would be on me publishing it on AO3 (with proper credit, of course). I hadn't intended to share it anywhere when I was writing it, I would have asked permission beforehand if I had, but it ended up being the first piece of fiction I finished and liked in a while and I wanted to share it. Let me know if you're comfortable with that or if you would rather I didn't!
link to the poem
omg thank you so much, i would be honored!! i’m prettydizzeed on ao3 (link) if you’d like to link to that as well as my tumblr. if you’re comfortable sending me the link i’d love to check it out!!
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ID: a reply by @headlessandhellbent to this post (link). the reply reads “HEY. My MRI results just came back with mild matter disease this morning. What a wild time I'm living in, I'm 29.” end ID
i just read your posts about the situation, i’m so sorry you learned your results without any support/explanation!! it’s been a little over a year since i officially found out about my brain damage so i’m certainly not an expert but i feel a lot more comfortable with things than i did when i made that post. i’m not always able to respond promptly but if there’s anything i can help with feel free to dm me or send an ask!!
my neurologist didn’t take my results as meaningful even when white matter disease super correlates to my symptoms, i didn’t have these lesions when i got an mri at ~17, there’s ever-increasing scientific evidence of previsible brain damage, etc etc so i definitely know what it’s like to deal with this without support from medical institutions. regardless of what any doctor says or does, you know your body & experiences best and it should be up to you to decide how significant this is to you. it’s okay for it to be a big deal.
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anybody else have a sick4sick exes situation where like. you develop what used to be So-&-So’s Chronic Illness & then you’re fucking missing them when your symptoms flare
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been playing with this concept (link), currently in the form of a 3-part 30-line poem but like. i have substantially more to say on the subject lol
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to the discerning cripple kt tape too is a type of lingerie
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THE TYRANNY OF THE SUN IS OVER
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i do find it hilarious as somebody with involuntary movements that tumblr asks to confirm whether i want to boop someone but not whether i want to follow them from my dash, something that happens often enough for me to have a disclaimer about it
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happy crip time tdov 💖❣️ as a homebound person, i have a fraught relationship with most understandings of visibility, but i’m happy to be able to celebrate transness with y’all in all our semi-isolated glory 💓😘
(ze/zem/zyrs or any pronouns)
image description: three selfies of Mac, a white man femme with a red buzzcut & stubble, round black glasses, & septum piercing. ze is wearing a pink fluffy bathrobe and poses with zyr long pink & red nails as the bathrobe showcases some strategic cleavage. the photos each have a different snapchat filter: blacklight neon lipstick prints, VHS effects, & cartoon cherries. end image description.
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fucked up fucked up fucked up fucked up
#😭😭😭#mac.txt#vent post#repetition#in order to yk survive this im high as fuck but thats nooot helping the coherency etc
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literally every time i reset my shoulder it immediately comes back out of place. i’m not doing anything i’m literally just laying still in bed i don’t know what to do.
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Survey recruitment; I gave feedback as a later consultant & Tuttle is another Autistic AAC user who was involved in the project from the start. Shares are Definitely Helpful :)
Are you an autistic adult who uses speech and other tools (such as augmentative and alternative communication [AAC]) to communicate?
If you answered yes, please consider participating in this survey at this link:
We are interested in learning about the speech, AAC, and assessment experiences of autistic people who use speech and AAC. We are curious if a modified version of the Communicative Participation Item Bank (CPIB) can be a reliable tool for clinicians to utilize in measuring the internal experiences of speaking autistic people. Regarding assessment, we are interested in understanding how their speech efficacy, or the extent to which one can use speech to completely communicate their intended meaning, was measured and considered in the evaluation process and if the evaluation resulted in a recommendation of an AAC tool.
The survey includes a mix of multiple choice, slider, and written response questions and is estimated to take between 10-20 minutes.
No identifying information will be collected in this survey.
Please reach out with any questions or concerns via email.
We thank you in advance for contributing your insight on this important topic!
Karina Rayl, B.S. (Lead Investigator)
Graduate Student
Speech and Hearing Sciences
Portland State University
Email: [email protected]
Pang Lee Herr, B.S. (Lead Investigator)
Graduate Student
Speech and Hearing Sciences
Portland State University
Email: [email protected]
Brandon Eddy, M.A., CCC-SLP (Co-investigator and Faculty Advisor)
Associate Clinical Professor
Speech and Hearing Sciences
Email: [email protected]
Amy Donaldson, Ph.D. CCC-SLP (Co-investigator and Faculty Advisor)
Associate Professor
Speech and Hearing Sciences
Email: [email protected]
Tuttle (External Collaborator)
Email: [email protected]
Alyssa Zisk, Ph.D. (External Collaborator)
Email: [email protected]
#i trust cavar @librarycards’ rec so sharing this here + will check it out as a part time aac user myself!#aac#research
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Pass it along!
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there is no minimum amount of suffering before you are allowed to want to alleviate it
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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 💓💓
#tics#ticcing#involuntary movements#movement disorder#disability studies#asks#reading lists#movements of the uncontrollable body
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