#tic advocacy

[mxmorbidmidnight]

The Verdict (an original poem)

the new version of this poem, I have previously released some of it. It's the story of when the tics came on, I thought it was the end.

[tourettic-tulip]

your neurodiversity advocacy is not true advocacy if you only include people with ADHD and low support needs autism in it

[thatdudewithtics]

Sometimes I just realize that I may never be able to do some amazing jobs because of my tics. Being a zookeeper? I could hurt the animals or myself. I wouldn’t even be able to talk the guests because I’d swear at them. Can’t really be a teacher because I swear, too. I may never be able to drive, either, because of my tics.

It’s ok to be happy and disabled, but right now I’m feeling just kind of miserable and feel like my life has been kind of stripped of a lot of opportunities.

[justabunny]

I hate tics, mine make me jerk my head which makes my shoulder and neck sore :')

[whyshouldilistentoyou]

This is the next day for the disability pride boogaloo by @thepromptfoundry!! It was “autonomy”! Took some inspiration from the puppet boy audio from TikTok lol. This mainly catered to my tics but feel free to interpret how you wish!!!

Puppet Girl

Dance dance dance

Sway sway sway

Do as they wish

Move as they wish

You are not allowed

To have your own moves

You are a puppet, girl

you move when they want to

[melodymorningdew]

Grateful for the people coming to help me out today!

A couple of friends are coming by to help me clean and my mom's friend came by and is going to do all my laundry that backed up, so I'm freaking happy about that.

I gotta figure out a way to keep things clean, so they don't get this bad again, though. Trouble (my bf) and I were brainstorming last night about things that could make life more accessible for me:

-a couple of Roombas (one for vacuum one for mop)

-an Echo connected to a smart-home someday

-someone to cook a huge meal once a week that I can freeze and heat up

-someone to do a load of laundry once a week

-someone to occasionally do dishes or take out the trash every so often, so it cuts down on how many times I have to

-a shower chair

-an outdoor wheelchair for events where there is a lot of standing/walking

-a rollator or a walker of some kind to help me on bad days

-I need to create a capsule wardrobe so I can cut down on the amount of choices I have to make on a daily basis

-getting rid of all the junk I don't use

-a mini fridge/freezer and a microwave for my room

So far that's all I can think of... Anything else that has helped you that I could potentially add to the list?

[vvelegrin]

don't argue about tourette's on facebook don't argue about tourette's on facebook DON'T ARGUE ABOUT TOURETTE'S ON FACEBOOK AAAHHHH

[idlecommotiony]

This is going to be a hot take. People will be mad. But just bare with me for half a minute.

As a person with a chronic tic disorder, I always daily have to deal with ignorant people, who think they know better than me and my doctors. I’ve realized a pattern recently in my college classes about the demographics of these people; they are all people of privilege. It starts with one white boy in the back of the room whispering why my condition is fake, why I am fake, and why every move I make is basically “wrong” and not real. Its annoying but then the white women around him start believing him almost immediately and go with it.

The thing is in my five years of having F95.5 tic disorder and going out in public, a POC has never once said something regarding the lines of how I’m faking my disability. NEVER. And that’s why I found even as a white person I’m subconsciously drawn to them because I feel safer around them because we’ve both faced discrimination and know how it feels to be treated differently because of something beyond our control.

Now here’s where some of y’all are going to be mad but this is my experience and I am valid for that. First of all, I am apart of the LGBTQ community (I am a lesbian who is not out) and respect everyone who is part of that community. But I do hate the modernized portion of it involving how people view what is valid or not. I have had many people apart of the LGBTQ community (them assuming I am straight as well because I am never gay enough for them) bully and criticize my disability because they feel superior because they have received hate from their gender/s$xual orientation so they put that hatred out on someone who is also vulnerable. I am not saying this is all of the community but a portion has recently begun a surge of superiority for there orientation and has begun deciding that no one else can have it “worse than them” (an oppression race basically).

I know one girl in my class who is gay who stares evil eyes at me because I must be faking and suddenly one day she started telling people in class how quirky she is with all her problems and trauma and then continues whispering to her friend why I am faking this disorder that I haven’t even told her of, but since I haven’t mentioned it by name, it’s not real I guess.

It’s an ongoing cycle and I’m sorry for anyone who had to read this long but I’m so F-ing frustrated at these people who feel that they are educated and know everything and everyone’s issues when they know absolutely nothing of what every person goes through every day. The difference is for them it’s a competition -for me, it’s a thing in my life that I would stop in a heartbeat if I could to avoid the devastation it has brought me. I don’t want the attention, I don’t want the pain, I don’t want the people laughing in back of the room or the snapchat cameras I see briefly pointed at me and sent to god knows who

-and yet I will never be good enough for those people.

[patricia-taxxon]

a long while ago, i saw a tik tok of two people jittering around to music with the text "tic/stim warning" showing at the top, i posted this out of context calling it a "real life rage spell" and some people were confused. well, beyond the fact that my disabled body language shouldn't come with a fucking content warning, i had a strong issue with tics and stims being mentioned as similar or even possibly as interchangeable, and i'll try and articulate that now.

Stimming is a semi voluntary behavior that everyone partakes in, but for autistic people it's mandatory. That's the only reason we claim it as an autistic thing, like everyone needs a bit of sensory regulation every once in a while but autistic people have far more reason to. For this to be placed alongside tourettes tics, a specific condition that causes strictly involuntary behaviors that only people with tourettes can truly relate to, it bastardizes both conditions. like... it trivializes tics into just a habit, and it pathologizes stims into something alien to neurotypicals. i hate what tik tok has done to disability/mental illness advocacy i really do.

[mxmorbidmidnight]

1/8 school children develop tics in their life, a lot of the time a child will have a tic for a short period of time then have it disappear. This is not an uncommon instance for a child to develop a temporary tic. It is vital that before you spread information about a disorder that you are properly educated. You cannot base such claims upon the fact that tics look like what you think demonic possession does." It looks evil" isn't science and its not fair on people who have tics"

Remember:

Tics are neurological, not psychological and not "demonic"

Tics cannot be controlled

People with disabilities are not "possessed by unclean spirits"

You are entitled to your religious beliefs and opinions however what you cannot do is spread dangerous misinformation.

(this is not an attack, the sake of this post is to address misinformation and educate).

Just your friendly reminder that tourettes and tics in general are demons latching onto unclean spirits

[mxmorbidmidnight]

Its honestly terrifying that I'm the one educating healthcare professionals on my medical condition. When I was hospitalised for my tics I was attended to by psychiatrists and asked questions about whether I was hearing voices and similar such things. To those who don't know Tourettes is a neurological condition, I should have seen neurologist rather than psychologists and psyciatrists. I was put on anti psychotics for months that ruined my mental health and did nothing to improve my tics. The wariness from this situation led to me refusing and hating medications for period of time, making situations far worse.

A psychiatrist diagnosed me with Tourettes. He was not qualified to do that, only a neurologist can diagnose Tourettes. When I went to see a neurologist who we were told specialised in tics Upon arrival, after months and months of waiting we were told:

oh yeah sorry this is too complex for me. I don't really know anything about tourettes.

I've been forced to educate myself because I just cannot trust doctors.

I've been told things from "oh everyone gets that" too you just need to sleep more, eat spinach, you're too stressed about school.

It's scary when the people who hold your life in their hands don't understand the basics of your medical condition.

My situation is better than most. I have been extremely privileged where my family could afford private health and the many treatments, specialists and medication I need to not suffer and be able to live my life. This is how bad it is for me, you can imagine how much worse it is for people who cannot access this healthcare. People who don't have the option to go to the hospital in case of emergency, people who can't afford to switch doctors until they find one that takes them seriously, people who can't afford medications.

[autisticadvocacy]

ASAN is deeply troubled by the Supreme Court’s decision in Grants Pass v. Johnson. On Friday, June 28, the Supreme Court held that enforcing camping bans on public property against people who are unhoused is not cruel and unusual punishment as long as the laws about camping apply to everyone, including people who are housed. The Eighth Amendment of the US Constitution prohibits cruel and unusual punishment. The Court’s ruling means that people who cannot afford housing may be fined or even jailed for sleeping outdoors, even if there are not enough non-religious shelter beds for everyone who is unhoused in a particular community. We know that equal enforcement of an unjust law does not mean fair enforcement of a law. Today’s decision allows for an anti-camping law to be enforced even against people who have no choice but to sleep outdoors. This makes life harder for people experiencing homelessness and criminalizes it. This ruling opens the door for other jurisdictions to create similar laws.

This decision will disproportionately harm people experiencing homelessness, especially unhoused disabled people. People with disabilities are more likely to be unhoused or deal with housing insecurity than people without disabilities. In 2023, the Department of Housing and Urban Development (HUD) estimated nearly one-third of individuals experiencing homelessness are experiencing chronic homelessness and have a disability.

Many factors contribute to increased homelessness among people with disabilities. Disabled renters report being less caught up on rent than the general population. This is often because rent continues to rise above what low-income households can afford. Many disabled people are also restricted by SSI asset limits and subminimum wage, which allows employers to legally pay people with disabilities less than minimum wage. These programs trap people in poverty and make it impossible to pay the rent on even a small apartment in many communities. Housing requires having a steady source of income. Disabled people are much less likely than non-disabled people to have a job and disabled people face pay gaps at work. Homelessness is not a moral failing. Homelessness is directly tied to the cost of housing and rent-to-income ratio.

Housing is expensive, and saving money is more difficult as a disabled person due to a host of factors. Being disabled is expensive. Households with an adult with a disability that limits their work need, on average, over $17,000 more a year to have the same standard of living as a nondisabled person. Many people with disabilities need features in housing that would be considered “luxuries” and therefore priced higher. For example, a person with a physical disability might need to live in an apartment building with a doorman or receptionist who can help them carry packages up to their apartment. A person with Tourette’s Syndrome, whose tics cause them to make loud and unpredictable noises at all hours, may need to live in a single-family home so they do not disturb neighbors through thin walls. Many homes are inaccessible. Section 504 of the Rehabilitation Act requires only 5% of units to be accessible for mobility disabilities and 2% to be accessible for visual and hearing disabilities, but the prevalence of mobility disabilities is 12%, visual disabilities 5%, and hearing disabilities 6%. Disabled people who are able to afford housing often face discrimination. The 2023 Fair Housing Trends Report notes that discrimination based on disability accounts for more than half of complaints filed (53.26%) with Fair Housing Enforcement Organizations (FHO), HUD, and Fair Housing Assistance Program (FHAP). These factors can all contribute to disabled people becoming unhoused.

We cannot allow people experiencing homelessness to be criminalized for their lack of resources and community supports. Our country must prioritize community-based resources — and recognize people experiencing homelessness as part of our communities. We know that options like supportive housing and employment, peer support services, and other community-based services are more effective, and far less harmful to our community, than criminal prosecution and jail time.

ASAN calls on Congress and state legislatures to better protect unhoused people through greater funding for homelessness and housing services and legislation to protect homeless people from criminalization for camping in public. We also call upon HUD to re-release the “Affirmatively Furthering Fair Housing” rule proposed in 2023. This rule would require state and local governments who receive HUD funding to get rid of segregation and other discriminatory practices in housing, which disproportionately impact people with disabilities, people of color, and other marginalized groups.

All people deserve to live self-directed lives in the community of their choosing. Criminalization and institutionalization of people experiencing homelessness cannot be the answer — we must end the housing crisis and ensure that all people have access to safe and adequate places to live. ASAN will continue to fight for all disabled people to have the right to live in the community, and our government must do the same.

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

[thatdudewithtics]

People often harp on non-disabled people for saying that someone is “brave” or “strong”. While I’m not disagreeing with that, it can be a backwards compliment, being called “strong” for stick up for myself and my disability is really nice every once in a while. It makes my struggles feel seen and heard by others in a way I don’t always experience.

[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 💓💓

[whyshouldilistentoyou]

Day 10 of @thepromptfoundry disability boogaloo!! Today it’s invisible disability. Mainly talking about my tics again :p but idc how you interpret any of my poems!!

No matter what you do

I’m invisible to the rest

Yet annoying to you

I won’t go away

No matter what you do

I’m always there

Stuck in the shadows

Yet never there

When you say “appear”

I am apart of you

No matter what you do

[five-thousand-loaves-of-bread]

this should go without saying but “everyone can have ability to self advocate” and “everyone can self advocate right this second” are two different concept.

i say this even thought it sounds obvious because! see parents of nonspeaking level 3 autistic kid (but also adults) w high support needs say their kid don’t have functional communication, that they worried abt their offspring’s future—what happens if they die and not able to be here to take care of them anymore? their offspring dont have functional communication, can’t tell you anyone mistreated them abused them right now, and no idea if they will able to develop it in future.

and late diagnosed, lower support needs, and/or level 1, mostly speaking autistics come in very strong (many attack parents bc see “parent of autistic kid?” immediately think “ableist autism mom!!!”), accuse parents of not presuming competence, accuse parents of abuse, accuse parents prioritizing words over behavioral communication, accuse parents not listening to offspring’s behaviors. say “your child is self advocating, they can, don’t say they can’t!” or say or imply their child don’t self advocate right now because parents not do enough.

i’m all for presume competence. presume competence so so important. but, presume competence means “everyone can learn with proper support and accommodations, even if they may not seem like it on surface.” not “everyone have hidden skills they possess right this second everyone can do everything right now or eventually in the future!”

yes, most behavior is communication! (most not all bc tics, severe apraxia, etc). but the truth is behavior only goes so far. you can only communicate so much with behavior. even if other people presume every behavior as communication, may still misinterpret.

yes! you can argue screaming meltdown is communicating is self advocating! but screaming even two words “too loud! too loud! is different than screaming noises. in first scenario you immediately know what trigger meltdown! you immediately know what stimuli to remove! but the latter, just screaming noises—is it the noise? if it clothes scratchy? is it wrong spoon wrong plate? is it being interrupted? is it too many feelings?

“you can show them picture options and let them point! that is still self advocacy!” yes, but needing someone to provide you pictures is hardly same as able to go to pictures AAC yourself and select spontaneously.

not to mention that… the ability to know what you want to communicate, then go to pictures (whether app or physical printed), recognize what the pictures are, know what picture correlate to what you want communicate, have the motor skills and visual skills to pick the picture out of all the other pictures, then hand it to someone—all very basic skills taken for granted by most late diagnosed low support level 1 mostly speaking autistics. most probably never ever struggled with it. most probably don’t even realize so many nonspeaking kids and adults struggle with this. not everyone have ability to do this!! giving a nonspeaking minimally speaking person communication is not as simple as handing someone an AAC board and they magically can communicate.

what if what you want to communicate is not in picture?

all of these facts has become a taboo thing to admit in autistic circles.

and like i’m even nervous to say “everyone can have the ability to self advocate” because it’s such a extreme definitive generalizing sentence. who am i to make such a generalizing statement? do i know every possible manifestation of every possible disability that affect visual/motor/communication/cognition/etc? NO!

because you don’t know, because you are never sure, 100% presume competence. you never know. give them the chance to learn. see if any environmental factors are limiting them. try as much as you can.

but presume competence shouldn’t be weaponzied… not “if your child/client/etc unable to do this, you’re definitely bad abusive incompetent not doing enough all your fault” without nuance. sometimes it is the parent/professional/etc’s fault. sometimes it’s not.

a randomly selected nondisabled person, able bodied and neurotypical. learning to ski. not olympian champion. the parents are abusive, not providing them with all the lessons all the best equipment all the support? the coach are incompetent, not believing the person, not presuming competence, not believing they can be olympian champion? the equipment not the best in the world (even if best, not enough!!)!