gwyndisabilityblog

[gwyndisabilityblog]

we had a big thing about reminding everyone of the tenets of cripplepunk. well i think people need to remember the explicit acceptance of the "bitter cripple". someone who doesn't want their disability, resents their mobility and disability aids. someone who also doesn't have time or energy to pander to everyone else around them, abled people and disabled people alike. like. if a blind person doesn't want to humour sighted people, or an obligate wheelchair user doesn't relate much to ambulatory people and doesn't care to, or a Deaf/deaf person doesn't care for hearing people like. that's not infighting, they're not being "too mean" or "spreading hate" they're just another person having preferences. and they might not give a shit that you're also disabled and that's fine. we don't owe it to each other to pretend to relate to every other disabled person on earth, and some disabled people don't want to bond over disability, shared or otherwise, and some disabled people are focusing their energy on staying alive. like what are you doing by jumping in and immediately acting like wheelchair users or whatever are big meanies for not relating to you.

[gwyndisabilityblog]

i'm totally coining "ambulableism" - ableism from people who can walk (disabled or otherwise) towards people who cannot. examples include:

claiming it's the same thing to need a wheelchair fulltime vs part time

telling me "i love your wheelchair" when i'm minding my own business

using the wheelchair stall when you can physically use another stall

everyone who has ever approached me in public to tell me about their hEDS/POTs unprompted (this happens at least once a week. i'm not joking)

telling me you're jealous of my wheelchair/wish you could afford one/wish you had the "confidence" to use one/"i need a wheelchair too but no one believes me"

bringing up my disability every 10 seconds or asking if i relate to things

pretending to be impressed when i do necessary tricks (ie. wheelie up a curb)

staring at me in public - bonus points for wearing invisible disability/neurodivergent pride merch and a forlorn "i'm disabled too and i just wanna be your friend" look

asking me how i was diagnosed, complaining about your own difficulty with getting diagnosed unprompted, asking me to diagnose you; i'm literally a stranger in a wheelchair

telling me how privileged i am to have a wheelchair/be diagnosed/never get fakeclaimed/whatever

"what's wrong with your legs" or "why do you look like that" right off the bat

making "your legs don't work" jokes within the first 12 hours of knowing me - seriously, y'all are wayyyy too comfortable, and not original in the slightest

assuming i want to talk to you or be your friend just because i'm disabled

moving out of the wheelchair space on the bus and then looking at me like a kicked puppy for the entire journey

this is (mostly) a joke post but if anyone has additions i'd love to hear them!

[gwyndisabilityblog]

shoutout to high masking schizophrenics and psychotics. i know it's hard to be struggling so much but not able to let anyone see. you shouldn't have to worry about being mocked, harassed, abused, or assaulted for being yourself. for being different. for being confused. for being afraid... you deserve to be able to exist and get the support you need, not shove everything down and keep it to yourself, just to avoid more hurt. you shouldn't have to do this alone. your presence, thoughts, and feelings are just as important as anyone else's.

i hope you're able to get the compassion and community and care you need someday. and until then, know that even if you don't know us, there are people who are rooting for you - people who understand and want the best for you. as long as you're here, you are not truly alone in this. you are loved.

[gwyndisabilityblog]

From someone who has experience with akathisia, involuntary movements, and tardive dyskinesia to anyone encountering the same issues:

It's not your fault! You don't have to feel ashamed or embarrassed if your body is doing something you don't have any say in! If anyone has something unkind to say about an expression you are making or the way you move, ignore them! If you have to rock or pace, do what I best for you before anything else! Don't prioritize anyone else's understanding or comfort ahead of your health and don't try to shrink away because they don't understand.

This is no one's business but your own, you don't owe anyone an explanation, and you don't have to apologize.

I know exactly how dehumanizing it can be to feel out of control of your own body. It's a distinctly disheartening and sometimes painful experience, but don't let the words of others add to the discomfort. You're handling enough as is, holding enough weight. It's not your job to perform for others.

[gwyndisabilityblog]

“We don’t need Tourette’s awareness month. Everyone already knows what that is.”

Tell that to the lady that followed me down a street with a camera because I have coprolalia (the swearing tic).

Tell that to the police officer who, when I started having neck tics, asked me if I was under the influence of something.

Tell that to my high school teachers who kicked me out of class for having loud tics.

Tell that to the store clerk who asked me to leave when I couldn’t stop making noises.

Tell that to the hospital elementary school teachers who threatened to lock me in a room if I didn’t stop tapping my hand on the desk.

There are so many people who are uneducated about Tourette’s and tic disorders. Until I can walk into whatever store, establishment or restaurant I want without being asked to leave - we still need Tourette’s awareness.

[gwyndisabilityblog]

I don’t see many post on inappropriate sinus tachycardia so i’m gonna make some starting with an explanation of it

inappropriate sinus tachycardia (IST) is a form of dysautonomia causing someone to experience sinus tachycardia, this makes the heart rate 100+ bpm at rest and and 90+ bpm over a 24 hour period without an identifiable cause. IST can be asymptomatic but many with it experience symptoms

Before i go on i will explain some of these terms

Dysautonomia is an umbrella term for conditions causing dysfunction of the autonomic nervous system, which is part of the nervous system that controls functions that we don’t think about or control. Things like heart rate, sweat production, pupil size, and much more

Sinus tachycardia is when the sinoartiral node of the heart send signals to make the heart beat fast. Causing tachycardia which is a faster than normal heart rate, normal heart rate is 60-100 bpm, 100+ bpm is tachycardia

IST is defined as a heart rate of 100+ bpm while at rest and a heart rate of 90+ bpm over a 24 hour period. There is no identifiable cause and IST is a diagnosis of exclusion and other things must be ruled out.

IST can be asymptomatic but many people with it experience distressing symptoms like (not a full list)

Palpitations (uncomfortable feelings in chest from fast heart rate)

Chest pain

Shortness of breath

Issues with exercise

Presyncope (feeling like you’re going to pass out

Syncope (passing out

Some with inappropriate sinus tachycardia will also have jumps in their heart rate from mild exertion

Treatment for IST may include certain medications such as beta blockers, calcium channel blockers

ivabradine is shown to be effective but is not yet approved for treatment of IST

People may also use other forms of treatment like exercise training and lifestyle changes

Sinus node ablation is a surgery some get for IST which is seen to be effective at first but a lot of people with it notice that it reoccurs in a few months

Lowering heart rate in those with IST may not always improve symptoms

Sources and more information

https://www.dysautonomiainternational.org/page.php?ID=228

[gwyndisabilityblog]

Tired of the "haunted disabled person takes pain pills for their physical pain and also for their emotional pain.. they are so broken.. so addicted and haunted" trope.. give me a disabled person that's able to laugh, live, talk, give love because their meds take away the pain. A disabled person who's finally able to have an identity outside of their pain. A disabled person whose life is no longer taken over by their pain every minute because a doctor decided to actually tangibly help them. A disabled character whose purpose isn't simply to prop up the opiate crisis propaganda that leaves chronic pain patients in pain their whole lives with no relief.

[gwyndisabilityblog]

Happy tourettes awareness month! Here are some things in no particular order I wish people understood about living with tourettes!

- We have to live with a constant fear of others thinking that we are on drugs or otherwise dangerous to be around. A lot of people tell us to not suppress because "you shouldn't be embarrassed!" But it's not about that. Having tourettes can genuinely put you in danger, and for many of us already has many times. It's not about being embarrassed, it's about being fearful.

- Suppression hurts. It's exhausting and it's hard.

- Coprolalia is more than just swearing. It can also look like saying "I have a bomb" when you're in an airport. Or "I'm a nazi." Or any number of things that are socially unacceptable to say. Coprolalia is about your brain attaching to words or phrases that you simply shouldn't say.

- Copropraxia is its lesser known twin, which is the same thing but with movements instead of words.

- Tourettes isn't just tics. Many of us also have rage issues and rage attacks, impulsivity issues, comorbidities like ADHD, OCD, and autism, chronic pain from constant movement leading to sore muscles, learning disability, social impairment, and much more.

- A clinical feature of tourette's is waxing and waning. Put simply, that means that sometimes we have a lot less or even no tics, and others we have a ton of tics. Waxing and waning periods can last hours, days, weeks, months or even years.

- Up to 50% of people with tourettes go undiagnosed in childhood

- You can keep talking while we are ticcing unless it's obvious that it's affecting our ability to hear (for example if I'm screaming.) we can hear you while we are ticking. Tics don't take up our entire brain space, in fact a lot of the time we aren't even thinking about the fact that we are having a tic unless you point it out

- In that vein, don't respond to, comment on, or overly pay attention to people's tics. Doing so will just make us have more. The best practice is to simply ignore them and treat us like any other person.

- A lot of us can drive.

- No, I don't think I tic my sleep. Some people do. But generally, how would we know?

- No, I don't tic during sex. And you're a weirdo for asking.

- Concentrating on something generally makes tics lesson or completely go away. So when you see someone with moderate to severe tourette's have really good eyeliner, or be able to draw or sing or dance, it's not an indicator that they're faking. It's a facet of the disorder that doing things we like lessons tics.

- Studies have found that people assigned female at birth or who otherwise have estrogen dominant bodies have less tics in childhood that gradually increase with age. Many of us are told in childhood that the ticks will go away, and then are taken by surprise when they get worse in adulthood. This isn't widely known, because most studies on tourette's until recently are done on people assigned male at birth

- Also on that note, afab people with tourette's are more likely to go undiagnosed than their amab counterparts.

- Tics don't inherently hurt. What does actually hurt though, or is at least uncomfortable, is the premonitory urge we get before a tic. This can feel like a buildup of energy, sort of like a cough or a sneeze, and gets worse the longer or more that we suppress a tic.

- Tics are both involuntary and controllable. This may sound like a contradiction, but breathing is both involuntary and controllable. You can hold your breath for as long as you can, but it will eventually force you to take a breath. Tics are the same

Fellow tourettics, please feel free to add more in the reblogs or replies :) happy awareness month!

[gwyndisabilityblog]

People with significant scarring aren't obliged to cover up their bodies to make you feel comfortable, but also visible scars aren't an invitation to start asking invasive questions either. It's still none of your fucking business

[gwyndisabilityblog]

Psychotic People are Harassed and Bullied for Their Disability.

Most normal people aren’t even aware that this is a thing. There was a bad instance of it at one of my jobs. I had a delusion that my coworkers thought was comical. So much so that they felt the need to coerce me into talking about it in front of other coworkers (I didn’t have any reason to bring it up without being led in that direction). A select few decided to make a game out of how many times they could coerce me into bringing it up in a day. It reached a point where it was literally all I talked about. It wound me up in the hospital.

You may have heard of this game called “wake up”. It’s when assholes work as a team to spontaneously say “wake up!” to you throughout the day in an attempt to make you believe you’re in some sort of coma. A good friend of mine with schizophrenia was driven into an episode over “wake up”. If any schizos reading this ever hears people say “wake up” to you, ignore it and never talk to who said it to you.

Similarly, there’s this thing people do online and irl where they pretend to be a person trying to reach you while you are in a coma kind of like the movie Total Recall. This too has hospitalized schizophrenic people.

Everyone knows “I’m in your walls” by now or should. It gets people banned from mental health forums, but society won’t look down on people for doing it that way they would if another marginalized group was targeted.

Shit happens at the very facilities psychotic people go to be treated. One tech lady, upon being asked not to touch me, would reach out and touch me each time she said, " I'm not going to touch you". She wasn't checking vitals or anything. Just a sadistic head game she wanted to play.

All of this is so frequent that I could write about it every day and never run out of material. Any other psychotic person could as well. I know because when I share a story with my crazy friends, they always have a similar one. Awareness should be raised about how commonplace and damaging all of this bull shit is.

[gwyndisabilityblog]

autoimmune diseases community dropped!

Come join if you have autoimmune disease! Hopefully this will become a nice cozy community. Made by someone with autoimmune disease (spondyloarthritis)!

[gwyndisabilityblog]

Constantly reminded that even a lot of disabled people don't trust people with brain damage to think for ourselves and hold opinions, let alone abled people. Constantly reminded that even the most otherwise progressive people often think that it would be better if I had died and will happily tell me that. Constantly reminded that being visible both online and offline as someone with noticeable brain damage is a sure way to get myself dehumanised or worse. Well fuck you I'm doing it anyway

(This is about physical brain damage, including ABIs. No your autism/ADHD/PTSD/depression/etc. is not brain damage. Non-brain damaged people can reblog but don't add anything.)

[gwyndisabilityblog]

Seriously drives me crazy. Thank you for articulating this.

insane to me when former gifted kids hear other people (mainly disabled people and dropouts) talk about being horribly traumatized & irreversibly harmed by the school system and their response 9/10 times is “oh yeah??? you think that’s bad??? well my teacher said I had potential and everyone said I was going places and then I didn’t” like we’re supposed to be absolutely devastated for them because of this. lmfao

[gwyndisabilityblog]

Shoutout to everyone who experiences sleep as a stressful event.

Shoutout to people with sleep anxiety.

Shoutout to people who often have nightmares as a result of trauma.

Shoutout to people who often experience sleep paralysis.

Shoutout to people who often experience flashbacks in their dreams.

Shoutout to people who find it physically painful to sleep.

Shoutout to people who find it physically painful to lay down.

Shoutout to people with OCD that interferes with sleep.

Shoutout to everyone with insomnia.

Shoutout to everyone who often has nightmares in general.

Shoutout to everyone who often experience night terrors.

Shoutout to people with sleep apnea.

Shoutout to people whose chronic pain/illness worsens during sleep.

Shoutout to people who live in an environment where it’s hard to have uninterrupted sleep.

Shoutout to people who cannot afford or access comfortable and or clean bedding.

Shoutout to people with a phobia of something involving sleep.

Shoutout to people who often have dreams that disturb you.

Shoutout to people who experience worry or pain at the designated time for peace and comfort. I see you and I love you.

[gwyndisabilityblog]

"altruistic narcissism" signs based off my experience with it

-You hate the idea of being less moral than others, and want to become the most moral person. You view morality as a competition which you hope to win at.

-You find euphoria (narc supply) in helping others, either from within yourself or from external sources like people being grateful towards you.

-You excessively people please and self-sacrifice in hopes of currying people's favor/being liked, being overly giving at your own expense.

-You have a rigid and inflexible moral code that you refuse to bend on, seeing it as the objective truth or standard for the world even if it is deeply wrong.

-You have a tendency to view others as in need of your help when they really do not need it.

-You might fantasize about being able to fix problems like world hunger, bigotry, and climate change and believe you're the one capable of fixing these problems if you jUst HaD thE PowER. (mocking myself here)

-You tend to split over people you've helped, especially if they don't seem grateful for your help.

-You feel as if you're one of the only moral individuals in a deeply cruel world.

-You might misidentify yourself as an "empath" or as having special capabilities that make you magically better at dealing with people than others.

-You feel the urge to share your good deeds with as many people as possible rather than just keeping them between you and whoever you were performing the good deeds for.

-You "couldn't possibly be a narcissist" according to others because people don't associate pro-social/kind/compassionate behavior with NPD.

-You have had trouble relating with the stereotypical image of the self-centered narcissist bully that is so commonly circulated.

(I am not a psychiatrist and this is not a diagnostic criteria, "altruistic narcissism" isn't an official term in relation to NPD, just one I've seen floating around, this is highly based off my own experienced as an undiagnosed narcissist)

[gwyndisabilityblog]

If you're someone who makes delusion baiting jokes because you don't understand why they are harmful and dangerous and genuinely want to understand from a psychotic person's perspective:

Delusions are scary as hell. They can be so genuinely terrifying that it can hinder a psychotic person's ability to cope with reality. It's not the same thing as gullibility or being easy to trick. Imagine you're bringing allergens around someone with an allergy. It's not their fault they have a sensitivity to it. That is kind of what it's like for us. We have a sensitivity to certain kinds of messages due to factors we can't control in our brains. It might feel like you're spoiling the joke by making it clear its a joke and that *anyone* would know you're not serious, but it can be deeply hurtful if you send someone into a spiral over what is a light hearted joke for you and an affirmation of danger for someone else. Jokes are still OK to make! Just please take into account what you say and what it can do to the people around you. There are ways to do both.

If you're someone who read this post, knows this information, and decides that telling someone there's people in their walls without any indication that you're joking because you think it's funny and you don't care to consider the consequences and discard what we think entirely:

Fuck you.

[gwyndisabilityblog]

Gang Stalking

Gang stalking falls into the a category of very common delusions. It’s a delusion of reference. You observe normal everyday activities and perceive them to be something that isn’t actually happening. In the case of gang stalking, you’re perceiving large groups of people following you around as you go about your day.

It usually stems from a delusion of persecution. You start out by thinking a certain entity(government, Illuminati, McDonald’s etc) has taken an interest in you for whatever reason. From there you see signs that every day people are in the “gang”

It usually starts out with a small demographic. People on bikes, for example. Then you start seeing signs that cause you to include others. People coughing. People on cell phones. People driving certain vehicles. It just keeps building up.

As you dive deeper and deeper into the gang stalking delusion, you end up perceiving everyone around you as following you and observing you. It puts you on edge to say the least. It can even lead to panic attacks. After all, the whole world is apparently after you.

Gang stalking is nothing to scoff at. It can snowball into other delusional narratives. It’s not hard to imagine someone coming to the conclusion that they’re famous. Many gang stalked people do exactly that.

As with most delusional narratives, it’s often only through trusting others in your life that you learn that you’re not worthy of being stalked by the whole planet. People have better things to do.