#epilepsy

[autistpride]

Autism Acceptance

Prompt day 6: April 6

Amnesia AU

Word count: 1500

@wolfstarmicrofic

Remus was worried that his parents would say no. That they wouldn’t even listen to what he had to say and shut the conversation down. Remus knew he needed less support than he used to, but he was doing so well.

Remus had scripted his pitch in his head daily, sometimes multiple times a day, for the last week. As the number of days increased, so did Remus’ anxiousness. He began to pace and wring his hands. He started to withdraw and stopped speaking.

The change did not go unnoticed and finally Hope called a family meeting to have it out.

“Okay Remus, you’ve been wearing holes in the carpet again and I am pretty sure you should be wearing your compression gloves from how much swelling you’ve caused in your hands over the last week. What’s going on?”

Remus’ knees bounced and his hands clenched on the trousers of his pants. He took a breath and shook out his hands before he rose to his feet and started to move around the room in laps.

“I was talking with Sirius when we had our last date. We went to the skating rink and then had ice cream, you remember?” Remus asked pausing to look at his parents who sat together on the settee.

Lyall motioned with his hand to continue. Remus started to speak and then paused. He tried again and then again. His carefully planned out proposal instead fell from his lips in a single sentence that sounded more like a demand.

“Sirius asked me to move in with him and I want to do it!”

Sirius had asked him to move in with him and Remus wanted to. He wanted to so badly. They had been dating for three years now and while Sirius had his own struggles at times due to his traumatic childhood, he understood Remus in a way no one else ever had.

Sirius and him had met at an autism family event. He was there with his brother Regulus who Remus was sorta friends with already. Of course Remus hadn’t known that Regulus had a brother or that he was as handsome as he was until the day they met.

According to Regulus, it took Sirius two months to coax up the courage to ask Remus out. Remus didn’t believe him with how smooth Sirius was when he finally did ask. But apparently Sirius kept asking Regulus questions about Remus until Regulus got annoyed and dragged Sirius to their weekly autistic adult meet up at the library so Sirius could pester Remus instead of him.

“Okay,” Hope said softly from her place. Lyall smiled a half smile when Remus spun from his pacing and stared at her.

“Really?” he asked, surprised and trying hard not to let his excitement sound in his voice.

“Ya, really. You both have been together for over two years now. He knows your triggers and glimmers and I’ve watched him calm you down from a meltdown as well as support you through your shutdowns. Ya. I think if that’s what you both want, then you should do it. I just worry about your epilepsy dear.” Hope said honestly.

“Sirius knows what my tonic clonic seizures look like mam. He even went with me to my last EMU.” Remus pointed out.

“I know, but what if they get worse again?”

“Hope darling, you can’t keep Remus here forever just because you worry that someone else will ignore all the signs like what happened in the past. Sirius is a very kind and attentive partner. He won't hesitate to call Remus’ provider if he notices anything.”

Hope let out a sigh and stood, pulling Remus down to hug her. Remus mouthed a silent thank you to his da over her shoulder and Lyall returned the gesture with a thumbs up.

Now Remus just had to tell Sirius yes, pack up his stuff, and he would be all ready.

Two years later saw Sirius and Remus happily living together. Oh they had had their fair share of disagreements in the beginning. Remus has resorted to masking around Sirius because he was afraid Sirius wouldn’t love him if he saw the real him all day everyday and not just for their small dates and random sleepovers in the lounge of the Lupin home. This led to a slow shutdown. Sirius tried to communicate to Remus during that time, but Remus was nonspeaking and wouldn’t respond to Sirius’ texts outside of simple replies to questions like, ‘do we need milk?’ After five months, it resulted in a fight that blew up so spectacularly, Remus was surprised that the police hadn’t been called on them.

“Hey Sirius do you know if we ha-” Remus began to ask when his words stopped. His eyes blinked and his plate fell from his hands and clattered onto the floor before Remus shook his head slightly.

“What were you looking for?” Sirius asked as he knelt down to pick up the plate.

“Huh? I'm not looking for anything. Why do you have my plate?” Remus asked, annoyed and took his plate from Sirius’ hands and stalked back to the kitchen.

Sirius sat stunned for a moment before following Remus. “You were. You came in to talk to me about something. Started to ask if I knew if we had something but then you stopped.”

Remus blew the situation off, but the scene replayed in Sirius’ head over and over the rest of the day.

The next time it happened, Remus had been cooking. He was peeling potatoes for supper and that time Sirius ignored the forgetfulness and panicked over the fact that Remus had dragged the potato peeler over his finger and peeled some of his skin away.

The third time, Remus had just finished brushing his teeth and was putting his tooth brush away. Afterwards he argued with Sirius that he had not in fact brushed his teeth and proceeded to brush them a second time.

Multiple times a week Sirius noticed these little things. Forgetting to turn off the hob, looking for his shoes after just putting them on, feeding their cat Fidget two hours after feeding him the first time, and more incidents than Sirius could count of starting to say something and then just staring at Sirius for a moment and having no recollection on what he was saying or even wanting to say.

Sirius finally broke down and demanded that Remus speak to his provider. And despite telling Sirius he was worrying for no reason, Remus agreed and scheduled with them.

Three months more of waiting, where Sirius noted mentally everytime something would occur and then typing them into a long list in the notes app on his cellphone. Three months of Remus telling Sirius that he was wrong, that he didn't or wasn't doing something, and telling Sirius he felt fine.

Four months and another EEG confirmed that Remus’ epilepsy had gotten worse. He now had not one, but three types of seizures, and one of them was causing Remus to have a type of amnesia and the medication he was on was making the third type worse.

Five months and the medications Remus was on were completely different. It had taken a month to safely wean down on one medication and rise to a therapeutic dose with another. But the side effects of switching meds caused Remus to be irritable and lack any appetite. Sirius stuck by Remus’ side through it all and had taken to buying pizza once a week because it was the only food Remus would eat more than a few bites of.

Hope suggested and offered many times to have Lyall pack and move everything back into Remus’ old room so that Sirius wouldn’t have to deal with it. Each time though was met with a narrowed glare and a polite, “no thanks” from Sirius.

Six months and Remus was finally feeling more like himself, despite still not eating much. Remus had read over the list Sirius had made for his neurologist and apologised fiercely to Sirius for the way he had acted. He felt terrible and suggested couples counselling due to the fact that over those few months Sirius had withdrawn and seemed to walk on eggshells around him. Remus hated that he had caused Sirius to feel scared, gaslighted, and condescended to.

Nine months Remus and Sirius were communicating better. They had completed their couples sessions but both still continued on individually.

One year and the two were doing better than ever.

Two years on the new medication was also their seventh year together and one year with Remus’ seizures under control, Sirius insisted on a celebration with all their family.

Remus spent nearly a week pacing holes into the carpet anytime Sirius wasn’t home. He scripted his words until he knew them by heart. None of that practice mattered as Sirius and Remus proposed to each other at the same time. They said yes.

#mauraders #my writing #wolfstar #actually audhd #autistic adult #autistic remus #autistic reggie #autistic pride #epileptic remus #epilepsy

[ashleyysss]

THE best trio?😉😉

I'm gonna make forger family edit🤧🤧

#spy x family #spy x family spoilers #spy x family edit #spy x family damian #spy x family anya #spy x family becky #anya forger #damian desmond #becky blackbell #anya and damian #anya and becky #Damian and Becky #the trio #flash warning #flashing #epilepsy #epilepsy warning

[jules-hoard-of-stuff]

PSA for Across the Spiderverse:

Do NOT see the new Spiderverse movie if you have any form of epileptic condition or conditions affected by bright lights and rapidly changing colors.

I will not be spoiling the plot or anything happening in it, but it is important that people know, because ohhh my god the AMOUNT of flashing lights and rapidly changing colors from beginning to end was so rampant that even I, a non-epileptic autistic person, got a severe headache and wild overstimulation. They do not give a warning in theaters at all that this movie is NOT epileptic friendly from the literal beginning with the beginning credits - which is so, so sad!

This is a beautifully made film, it's wonderful, it's amazing, but unfortunately, it's not a good time for anyone super affected by bright flashing lights in rapid succession, especially those seizure prone.

I wanted to put this out there BECAUSE there are no theater warnings. Idk if anyone else has put it out there, but it is SUPER IMPORTANT!!!

I wish you all a lovely day and hope they eventually have a remaster that will be much more friendly to epileptic and other people affected by bright, flashing lights.

(EDIT: Changed all text to plain text for screen readers! Sorry about that, my bad!)

SECOND EDIT: please do not fight in the comments of my post please... if you guys wanna talk stuff out in DMs, that is a-okay and not my business but I directly get notifications for everyone's comments and replies- including people fighting in the comments.

I understand that some theaters have warnings in them. Mine did not, and many other peoples' did not. It seems to be a theater by theater basis, so please understand that is where I'm coming from. If you had a warning in your theater, that is wonderful! And I'm very grateful that ya'lls theaters had warnings! That is a great sign. But please under stand that mine and many others' theaters don't have warnings.

Please take any arguments off my post, it is not meant to be grounds for heated discussion, just a warning for people who are photosensitive or epileptic. Thank you.

#across the spider verse #atsv #epilepsy #epilespy warning #seizure risk #please spread this around #i want to make sure people are safe

[glitchdollmemoria]

oh hey btw, apparently tumblr mobile now has an option to report ads for having flashing lights, if you click the three dots in the top right corner it should show up. not sure how long thats been there but i dont remember it being there at least a few months back, i would venture to guess it came with the recent update but shrug. fucking ridiculous that they cant just not put flashing ads in our faces in the first place, but at least this is an option.

people who dont have issues with flashing lights are allowed and encouraged to reblog

#actually epileptic #epilepsy #photosensitive epilepsy #actually disabled #spoonie #actually autistic #autism

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

#if one more person tells me to take a sick day i'm going to throw something at them #i just honestly cannot anymore #disabilties #disabled #actually disabled #epilepsy #ehlers danlos syndrome #physical disability #neurological disability #actually epileptic #zebra #chronically ill #chronic illness #spoonie #chronic fatigue #chronic pain #c punk #crip punk #cripple punk

[missjessefantastico]

with the new spiderverse trailer dropping out, it's time to ask the same thing i'm so tired of asking but have to:

tag for flashing lights

DO NOT tag as #epilepsy, TAG as #flashing lights

the epilepsy tag is a community tag for us epileptic folks to seek help, if you tag your flashing lights as epilepsy you're putting us at a greater risk

PLEASE REMEMBER THAT FLASHING LIGHTS CAN LEAD TO HOSPITALIZATION AND DEATH

#into the spiderverse #into the spider verse #spiderman across the spiderverse #spiderverse #marvel #actually epileptic #epilepsy #photosensitivity #txtjessefantastico

[gubgam]

Y’all, tumblr is letting you report ads for having flashing lights! Tap on the 3 dots at the top and look at the bottom! Please do this for your photosensitive friends!

#photosensitivity #epilepsy #disability #ads #migraine #seizure disorder

[verberation]

I just saw this ad and holy fuck. If you are prone to epilepsy or flashing light triggered migraines if you see the top of THIS ad -

[Plain text ID: Image of cropped tumblr ad. Text reads ‘sponsored by WordAds. 5 Unique and Awesome Lightsabers. Not all lightsabers are created equal.]

Do NOT pass go. Do not try to scroll past. It is LONG and consists of a single incredibly stretched gif of random moving and flashing lights without distinct colours. It is seems as if it was DESIGNED to tigger flashing light sensitive issues.

Anyway, fuck this ad & pass on the warning to any who see it.

#epilepsy #epilepsy safe #warning about a flashing ad ( no actual flashing images in post tho)

[haikyuupaladin]

TLDR; don’t give tumblr money until they start making visible improvements towards accessibility

I’ve seen a few posts around about something people are calling crab day where you’re supposed to gift the crab button to your mutuals to support Tumblr financially. Please don’t participate in this unless Tumblr starts making noticeable improvements towards accessibility between now and then. It’s been 5 months of me trying to get the bare minimum of accessibility for photosensitive users or even just find out who I can talk to to get anywhere, and Tumblr is refusing to make any changes.

@photomatt has doubled down on the suggestion that you should just pay for ad-free or install an ad-blocker instead of listening to any of the suggestions photosensitive users have repeatedly made. Please do not give money to Tumblr until they show a commitment to accessibility because they will continue to ignore our requests if it doesn’t impact them financially.

Some of the requests we’ve made are:

1. Allow us to disable autoplay on browser as well as the app. This is an accessibility feature, not a data-saving feature, and should be treated as such.

2. Include ads in disabling of autoplay, along with other formats that currently get around the autoplay feature. Currently even if you have autoplay disabled you can still end up with flashing lights in your face every few posts from ads.

3. Improve the reporting process for strobing ads. The quick reporting process doesn’t provide good options to ensure the person reviewing the report realizes that it’s being reported for flashing lights so you have to hope they agree it’s either malicious or offensive and don’t just brush you off as abusing the report function. The more complicated reporting process involves getting a screenshot and the link that the ad brings you to, which requires lingering on the ad, which if you’re trying to report the ad for your safety, is dangerous. You can also still get the same ad 10 times a row after reporting it until it’s been reviewed. Which again, presents a danger to users.

4. Add a community label for flashing lights. Flashing lights are commonly untagged or mistagged, even sometimes maliciously. It would be extremely helpful to the photosensitive community to be able to add a warning to a post that doesn’t have one.

I’ve talked a lot about the photosensitive community in this post because that’s what I have personal experience with and what @photomatt has explicitly come out and just said to buy ad-free about, but there are definitely other accessibility issues that need to be addressed as well (like the alt text function needing improvements to make it accessible to users who need it and don’t use screenreaders, or the fact that a lot of tumblr official stuff still doesn’t seem to use the alt text feature themselves). Please feel free to add on accessibility issues I’ve missed in the reblogs.

#crab day #epilepsy #actually epileptic #disability #photosensitivity #accessibility #tumblr safety #disability pride month

[spandexbutterfly4lyfe]

Photosensitivity warning for Good Omens season 2.

I can’t believe we have to keep doing this over and over again but in season 2 episode 1 of good omens there is a long scene (upwards of ten seconds, which to me is long for an extremely dangerous epilepsy trigger) of very bright white and red flashing lights. It’s the entire screen. Unfortunately for me I was already watching this with a migraine coming on and I’m immediately in agony. There was no warning whatsoever before this happened. It’s at almost the very end of the episode. Please reblog to save someone a migraine or seizure.

#disability stuff #photosensitive epilepsy #epilepsy #migraine #good omens #good omens season 2

[atohii]

in yet another failure to care about people sensitive to flashing, the new Scream movie ad includes aggressive flashing within a second of the ad starting. It seems to just be in the usual format of an ad, not one that haunts the background, but if you see the below at the top of an ad

go ahead and either exit the app or close your eyes and scroll. I was not able to get a screenshot of how the whole ad starts as there is, again, less than a second before the flashing starts.

really loving how people stopped caring about flash sensitivities lmao

anyway you should reblog this to warn your followers as well, I'd rather as few people have this violent surprise as possible

#scream 2023 #epilepsy #psa #and do not get me wrong #flashing ads (or flashing in general) with no warning is an act of violence #Migraine

[amaditalks]

So @photomatt (aka the guy who runs the company that owns Tumblr) is doing a livestream right now, taking questions from users.

A user with epilepsy asked if something could be done to make sure that ads aren’t vibrant or strobing, because that’s a seizure risk.

Matt made some vague noises about looking into it, kind of mumbling and then full voice immediately said “you should maybe buy the no ads upgrade, or get someone to gift it to you.”

He suggested the user pay for basic accessibility, to make sure the site doesn’t give them seizures.

I shouldn’t need to explain why this is very very bad, especially in conjunction with that last post from @staff.

Tumblr is apparently running a $30,000,000 deficit, and reversing that is the clear priority of the ownership right now. The interests of users aren’t going to be important until or unless they find a way to monetize us.

#ableism #matt mullenweg #accessibility #epilepsy #we’re nothing but potential revenue sources now #it’s about to get bad

[brainbuffering]

TL;DR : Please report any adverts or blaze posts you see that contain flashing images to tumblr.com/support 

After my blaze post about disability access in media was rejected due to reasons ungiven, I got in contact with Tumblr and pointed out their irony in rejecting my post but continuing to promote adverts that contain dangerous levels of flashing imagery, high contrast colours, and glitch effects. 

They told me to screenshot/screen record any of these adverts I saw and report them to tumblr.com/support along with the approximate date and time and the website they redirect to. 

Of course, for Photosensitive people who have been forced to witness these adverts, this sort of thing is nearly impossible. How can you have the wherewithal to report an advert whilst suffering from a seizure or migraine? 

This is where Allies come in! Please can you collect any and all adverts you see that contain flashing lights at a rate of 3 Flashes Per Second or higher/Glitch Effects/High Contrast Colours? Then, on 26th March (Epilepsy Awareness Day) I suggest that we all send these adverts in on mass! It'll help to get our point across that this is a REGULAR OCCURRENCE that affects an entire community of people, and hopefully we'll be able to enact some actual change to make this website more accessible for disabled people! 

If you are seeing this after 26th March, or worry you'll not remember to do so by then, fear not! You can send the posts to Tumblr Support year round! It's just useful to have a date to organise these things around for maximum impact.

After their rejection, Tumblr gave me a free blaze so let's see if this one gets put through! Or if they'll reject it on unknown grounds once again. 

#actually epileptic #epilepsy #tumblr #actually disabled

[kunaigirl]

Happy Disability Pride and awareness month! Let's talk about Epilepsy!

Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!

First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.

The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)

Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.

If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.

At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.

As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.

And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.

My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.

Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.

If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.

#epilepsy #epilepsy awareness #actually epileptic #disability pride month #disability awareness month #disability awareness #ok to reblog #disability pride

[crippledcryptidd]

A “flash warning” in font to small to read is not a proper flash warning

A “flash warning” in the corner of the post where you cannot see it right away is not a proper flash warning

A “flash warning” that appears the same time as the flash is not a proper flash warning

A “flash warning” in a hard to read font is not a proper flash warning

A “flash warning” in the caption is not a proper flash warning

A “flash warning” in the comments is not a proper flash warning

—

A proper flash warning is

- in a big, easy to read font

- is up for enough time before the flash for someone to read

- is in the middle of the screen

Put proper flash warnings

#disabled #queer cripple #cpunk #physically disabled #actually epileptic #epilepsy #cripple punk #seizures

[photosensitive-despair]

Tags to use for photosensitive content

[Plain text: Tags to use for photosensitive content End plain text.]

"Flashing lights" and "flashing" are good catch-all tags, even if there is no flashing or strobe effects. The reason being is that these are the most common tags that photosensitives will have filtered. Blinkies are included!

"Eyestrain" is a good tag for content with lots of high-saturation and bright colors, or high contrast. This is not exclusive to gifs and videos, but also still images and artwork.

"Glitch" is referring to glitch effects, which can trigger photosensitivite conditions. While not the ideal tag, it is best used as well as the first two in the list.

From the notes - "strobing" and "strobing lights" are also used, but not as often as the first two. For strobe effects.

Tags that should not be used for photosensitive content

[Plain text: Tags that should not be used for photosensitive content End plain text.]

Any type of tag that includes "tw," "cw," or any other changes to the base tag. To Tumblr, the tag "tw flashing lights" and "flashing lights" are entirely separate tags. Someone who has "flashing lights" filtered will not automatically have "tw flashing lights" filtered. There are so many variants of these alternative tags that it is hard for photosensitives to filter them all, so using the base tags is the best for safety.

Any tags that use a photosensitive condition as the warning. The most common one is "tw epilepsy," which shows up in the search for "epilepsy" on this site, which will make sure that those who are epileptic will see that content. Think of it as similar to putting body-checking posts with "tw ED" and it showing up for people with EDs who are trying to recover. Other tags like this include "epileptic content" and "photosensitivity warning," and it can also make discussion of these conditions harder to find for those experiencing it.

The tag "seizure warning" is not a viable tag because it is not a warning of what the post contains, only what it may cause. People need to know what a post may contain through the tags to identify how much of a risk that content is for their condition.

Do not use any community tags as a filter tag, such as "epilepsy", "photosensitivity", "photosensitive epilepsy", etc. This puts your post in the tags used by the group you are trying to avoid seeing them. That will make sure everyone with that condition sees it.

#hope education #epilepsy #reddit migration #photosensitivy #blinkies