#Movement Disorder

[crippledcryptidd]

Happy Tourette syndrome awareness month

[andr3yvishn3vsky]

To be honest, after years of searching, trying to find my diagnosis, I just... Stopped caring about this. I even started to like this thing, I know, it harms me, but do I want to treat it? No. It's a part of me, that I like.

[crippleprophet]

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 💓💓

[twisted-rat-king]

Got a head MRI to rule out neurological causes for chronic pain and uncovered a chiari type 1 malformation (cerebellum extends into the spinal canal)

i knew i was neurodivergent but damn

[neuroticboyfriend]

girl help my fasciculations have turned into my shoulders rhythmically shaking. what the hell is this called. i know it has a word. is it clonic? i think it's clonic?

[chronically-jinx]

me anytime there isn't a clear path to an exit, so I have to wiggle worm through people while trying not to have a panic attack

extremely fucked up that the only way out is through

[fleur-alise]

who tf decided to let my stupid neuromuscular disorder move into my face

[anxiously-avoiding]

I just got an ad for a bra and it’s like “say goodbye to neck and shoulder pain” and I was going to make a joke but actually I wish my neck and shoulder pain could be cured by that bra. Wouldn’t it be amazing to live in a world where a movement disorder could be cured by a bra

[andr3yvishn3vsky]

And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?

[chronically-jinx]

this!! for the first 6 months of having my movements and not having any control over them, this was a huge issue.

I couldn't walk for the first 3 months. trying to find a wheelchair or something to help me balance was incredibly difficult, even in some medical settings.

as I started to get better, I was still having big limb movements. some places I just couldn't go because I risked smacking people or products off shelves.

people would stare, some would make comments and gesture at me. that's humiliating, I couldn't control my actions and getting shamed on top of it made me refuse to leave the house unless it was for appointments.

I didn't want to go out, I didn't even want my friends to come over because it was quickly beaten into my skull that I'm not acceptable for the public eye.

My movements are better but any time I leave the house, I end up having big flares because I'm so anxious. Making space for disabled people to just live their lives without having to deal with inaccessible public spaces and people who can't seem to mind their own business is a bare bones necessity

i hope you guys know defending disabled people's right to exist in public also involves defending disabled people's right to exist in public in ways that others might perceive as annoying, unpleasant, uncomfortable, and inconvenient at times. a blatant example is the "slow walker" thing. someone with tourette's syndrome who has issues with verbally ticcing is likely going to have trouble staying quiet in a public space where they're expected to be and doesn't deserve to be met with anger or punishing behavior for it. autistic children (and some adults) getting triggered into meltdowns due to an overstimulating environment. people with hearing problems having their phone on speaker while on a phone call. a wheelchair user taking up part of the road/sidewalk/aisle. people with autism, adhd, hearing problems, or other things that affect volume control having loud conversations. someone audibly talking to themselves, which can be attributed to many things. motor tics. dyskinesia. ataxia. pseudobalbar effect. the list goes on. some of thus may even be potentially triggering for your own issues if you're someone who's also mentally and/or physically disabled, but if you're well aware of how you can't help your response to it, you should be equally aware of how others can't help themselves either. people who aren't able to be disabled quietly and conveniently don't deserve to be punished or met with anger (or turned into a spectacle) for not deciding to shut themselves away.

[crippleprophet]

in need of involuntary movement advice

hi besties, so i have lupus that is currently untreated and have been developing a lot of neurological issues, most likely as a consequence of this. we are suspecting:

1) cerebellar ataxia because i list to the left, i have an intention tremor, my balance has gone to hell standing & walking and is worse with my eyes closed, and i’ve got dysmetria (issues with finger-to-nose test)

2) some sort of movement disorder(s) affecting the basal ganglia. i experience what seems to be dystonia (slow twisting movements & muscles being held still in a certain position), chorea (jerky sudden movements), and ballismus (large flinging movements). the involuntary movements seem to get worse with directed movements, especially fine motor skills (possibly in some sort of relationship with the intention tremor), and strong emotions such as distress or excitement.

these have been getting significantly worse recently, and i’m especially concerned because my involuntary movements have “spread” to involve my legs and throat/tongue. i’m really struggling to find any practical advice & not just bullshit about exercise & taking care of your mental health or how brave caregivers are. my questions are including but not limited to:

if i’m walking while my legs start flinging, what do i do? i’ve started using my upright rollator around the house but i don’t think it could keep me from falling in that scenario

harm reduction in cooking for myself? i already don’t use knives but i’m worried about spilling boiling water or injuring myself with scissors

how to not break dishes. i need to use ceramic & glass because they can more reliably be cleaned for my allergy needs. someone suggested several small tables between the kitchen and couch which i’m going to try but would love any additional ideas as well

eating. i already use adaptive silverware and i think i’m going to invest in some bibs but it’s still so difficult

advice for choking - how to minimize it, what to do during it, etc

do you just take a pillow with you all the time or…? like i start hitting things around me really hard

we’re trying to find a community member who would be willing to drive me to appointments but in the event that i have to take a lyft somewhere, what do i tell the driver in case i start whacking their car?

if i for some reason have to be out alone, advice for not getting murdered by the police and/or forcibly hospitalized?

thank you so much to anyone who has advice, including any resources on where to look up this type of information!! i would really appreciate any reblogs for visibility

[chronicallycouchbound]

PSA: Please don’t ask participants to do grounding/mindful/somatic/etc practices at your events

Grounding exercises should not be an activity in large group settings, especially unsolicited and without warning, especially if you’re not aware of every single person in the space’s mental health conditions, physical health conditions, and personal relationship to their body.

Practices such as mindfulness, grounding, somatic exercises, breathing techniques, body scans, etc. are very helpful therapeutic tools to help manage stress. They can (and do!) help plenty of people– when taught safely and used effectively!

HOWEVER for people with conditions that cause psychosis and/or dissociative conditions such as depersonalization/derealization, these techniques are contraindicated and can make their symptoms significantly worse. They should only be used with guidance from their mental health team and adapted to their needs. For people with conditions like anxiety and PTSD, being aware of breathing can trigger a trauma response or anxiety attacks.

And for people with conditions that cause chronic pain or other uncomfortable bodily sensations, becoming re-centered with their bodies can cause more awareness of the pain they are in, which a level of (ideally functional) dissociation is actually helpful. For people in wheelchairs and powerchairs, touching the ground beneath their feet isn’t always an option. For people with cardiac and pulmonary conditions, deep breathing can be impossible or can trigger asthma attacks. For disabled people in general, doing body scans can be impossible due to paralysis or limb differences. They can bring awareness to things the person wasn’t aware were wrong to begin with (which is helpful in certain spaces, but not a great ice breaker at a retreat!)

And for trans people, binders and other garments can restrict breathing, and taking repeated deep breaths while binding can cause rib damage (which is why you shouldn't bind at night, while coughing from sickness, while exercising, etc). Becoming centered in a body that makes you dysphoric can be deeply distressing, again, a level of functional dissociation helps.

This also goes for plenty of other people in marginalized bodies, such as people of color, people who use substances, queer people, and more. Becoming grounded in your own marginalized body can be a heavy weight to carry, and needs appropriate and individualized care to be a beneficial experience.

As an alternative, I suggest doing a round of gratitudes instead, it allows for people to choose their level of vulnerability in spaces, while not being generally contraindicated for many people. Doing fun (and appropriate to the setting) icebreakers are great. Ask what brings someone to the space. Check-ins about basic needs such as if people need to use the restroom, eat, drink water, are rested, etc. can be more appropriate body check-ins for folks to do.

I don’t recommend doing these exercises even with a warning beforehand. If I'm in the room while someone is leading a breathing exercise, even if I try to ignore it, I (and most people) would automatically become aware of my breathing. The same goes for any other techniques. These techniques can cause real, life-threatening levels of harm for some people, and can even just be deeply uncomfortable or distressing for others. Dissociation is not inherently evil or bad or harmful. It is the way the body and mind naturally respond to adverse experiences (note: it can also cause distress and at higher levels, can be disordered) it is best to allow people to exist as they are in communal spaces. Let people show up as they are.

Most spaces are not equipped or appropriate to respond to emergencies, difficult feelings, and all the varied responses that can come from folks doing mindfulness in group settings.

I personally do some things before large gatherings and events to feel centered on the activity I’ll be doing, and afterward, I decompress. Encourage participants to lean on their natural supports and offer suggestions for it! Be creative in your caring!

This also doesn’t mean to discourage these practices! If you see someone doing deep breathing, check in with them, offer a space for them to decompress, care for them! Worksheets or posters on techniques like square breathing and 5 senses check-ins are great for a quiet room or spaces where participants can decide if they want/are able to engage with those tools. It should be a fully consensual opt-in, rather than being forced to opt-out. Having to leave a room when a group leader says “We’re going to start a mindful breathing meditation, please feel free to leave if you have psychosis, chronic pain, or are trans” is obviously othering and outs people.

Sincerely, someone who has psychotic symptoms, dissociation, chronic pain, is trans and whose body is marginalized in many ways and is really tired from trying to explain this at every event I go to

[crippleprophet]

trying to find posts by people with chorea and only getting shit about the fucking saint, house md reader insert, & typos of “chores” 😭

[magnetothemagnificent]

Non-ADHD and non-autistic disabled people whose only idea of ADHD and autistic people is shaped by media depictions of a nerdy white boy or a quirky goth girl with low support needs: "Yeah ADHD and autism are destigmatized and we should ignore people with ADHD and autism in favor of real disabilities. I am very smart and progressive."

Lateral prejudice towards other disabled people will get us nowhere.