#actually epileptic

[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

[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

[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

[justepilepsy]

Today on low-key kinda accidental ableism at a con: Was at a con this year and at some point the staff decided to project laser light images onto the wall above my booth. Which.. fine it's in my back so I can't see but the other artists were very clearly bothered because the lights were incredibly strongly flickering, instead of a reasting image. So my friend whom I shared a table with walked up to a con staff member and said "Hey can you turn this off? It's really bothering the artists to look at." Staff member said something and talked into his walkie talkie. Nothing happened. 20 minutes later i walked up to them and said the same, but also said "Hey, can you turn the lights off, I have epilepsy and don't feel safe." Response was "Now that's an actual reason." and less than a minute later the lights were turned off. It's good they turned the lights off. But nobody should have to disclose a medical condition in order to get heard. I don't know if anyone of the artists facing that specific wall had photosensitive conditions. But they were bothered by them and heavily distracted. It was exhausting to look into the corridor of visitors for them because of these lights. My epilepsy shouldn't be the only justified reason to listen to people saying strobes and laserlights are annoying/genuinely bothersome. Glad to be of service, but also, fuck you to this response.

#actually epileptic #photosensitivity #ableism #epilepsy

[gale-in-space]

Crawling back out of hiding to say that I don’t think we talk about epilepsy on here as much as we should

Epilepsy is not just the “flashing lights and bright colors disease.” It just isn’t. There are so many different variables that make up what a seizure is, and I feel like the word “seizure” in and of itself is really only understood in the case of tonic-clonic (“Grand Mal”) seizures, i.e. the most dramatic type of seizure that can cause loss of consciousness (LOC), as just one example.

Not all of them cause LOC! In fact, a seizure can be as simple as “staring into space” for a spell and losing time, sometimes while making involuntary twitchy or jerky movements. They may feel like being in a dream, or invoke a sense of deja vu. They may cause muscle stiffness, dizziness, or tingling. Sometimes people respond differently while in a seizure, and may sound confused or dazed. Sometimes they can cause random feelings of happiness or anxiety. And then there’s also the repetitive movements that can sometimes look like stimming. 

Another thing that’s misunderstood is that not everyone person with epilepsy is photosensitive (i.e., sensitive to flashing lights and such), and seizures in general aren’t just triggered by flashing lights or colors alone. Seizures can also be triggered by specific times of the day, sleep deprivation, alcohol or drug use, stress, hormonal changes and periods, nutritional factors, medications, etc. 

According to Mayo Clinic, epilepsy is usually diagnosed when two seizures unprovoked occur within 24 hours of each other. An EEG can detect electrical activity in the brain, and is generally used in epilepsy workups. It is even used during sleep and can be a helpful aid in detecting nocturnal seizures (yes, those are a thing as well).

There are, as described above, several different types of seizures. Mayo clinic does a good job in identifying what type is which, but keep in mind that epilepsy is not something that can be self-diagnosed. If you think you might have epilepsy, talk to your doctor so they can assist with assessment.

#epilepsy #actually epileptic #okay to rb

[moviehealthcommunity]

Happy to report that Barbie has very minimal use of any strobe-type effects beyond some glittering sequins in an early party scene!

Our detailed evaluation of Barbie will be available on our Patreon page at Patreon.com/MovieHealth later tonight, and on Facebook and Tumblr on Tuesday.

#actually epileptic #photosensitive epilepsy #seizures #migraines #Warner Bros. #Barbie #Margot Robbie #Ryan Gosling #Greta Gerwig

[desertwaterwitch]

Made a similar post before (I don’t think on this account) but as a reminder:

We, as people with epilepsy, super appreciate when you tag something to let us know there’s flashing lights in it. A huge chunk of us have that seizure trigger. However, what’s important is to tag it this way:

Examples:

tw flashing lights

tw strobe lights

flashing lights

strobe lights

I notice people will tag “epilepsy.” That’s not good, though, because us epileptics regularly search that tag to find things about epilepsy and seizures we relate with. If someone tags the word “epilepsy” when there are flashing lights, we will pass them and possibly go into a seizure. Very dangerous, no matter what type.

For me I filter out those tags now, but coming across them because they’ve been tagged incorrectly, that’s scary.

I want to thank everyone who does tag correctly. You have helped me and others who have epilepsy.

Please pass this on! 💜

#super important #important #epileptic seizures #epilepsy awareness #epilepsy #seizures #seizure disorder #actually epileptic #chronic illness #actually disabled #disabled

[impunkster-syndrome]

I want to remind everyone that someone intentionally trying to trigger a seizure is considered assault. It doesn't matter why or if they think it is funny. It's assault.

#epilepsy #neuropunk #actually epileptic #seizures #photosensitive epilepsy

[elibethquin]

I was curious and googled if there was an epilepsy creature and since I couldn’t find any I drew one 💜🦋💜

#epilepsy creature #actually epileptic #I just wanted to make a silly guy to cheer me up #my art #epilepsy #autism creature #adhd creature #neurodivergence

[justseveralowls]

Reminder to my fellow spoonie/ disabled humans

-your mobility aids are not ruining you aesthetic

-your conditions do not make you a burden

-you are allowed to be angry

- you are allowed to grieve

- you are alllowed to seek joy

-you are allowed to make your life easier

-Your assistive devices are not weird or ugly they help you live and experience the world

-You are lovable

-you are valued

-Struggling or having flare ups is not a failure

- You dont need to explain yourself to anyone

- Your succeses are amazing even if they dont happen in the typical form or on a certain timeline

- You are allowed to take up space

- You dont have to be productive or inspiring 

- You aren’t alone

#spoonies #spoonie support #spoonie #spoonie remiders #chronic illness #chronically ill #chronically sick #disabled #disability #disability support #actually epileptic #ehlers danlos syndrome #fibrostrong #pots support #mobility aids #autoimmine disease #chronic fatigue #chronic pain #assistive devices #affirmations #gentle reminders #invisible illness #you are not alone #mine #I have classical EDS with a bunch of comorbities and this shit is hard #I look 16 but feel 70 #you are worthy #you are valid #also fuck seizures

[haikyuupaladin]

Please, even if your posts about the new Spiderverse trailer don’t include gifs or videos from the trailer, please tag them as Spiderverse. Photosensitive epileptics have been listening to the hype over Spiderverse nonstop since the trailers for the first movie came out, and these movies are downright dangerous. Many of us find the hype upsetting because these movies are blatantly dangerous to photosensitive people and still get treated as absolute perfection. So many of us have blocked all the tags we can think of and still have the hype get through our filters because there’s so many different ways people tag these films. Please just use the tag Spiderverse and help us out here.

#epilepsy #actually epileptic #spiderverse #across the spiderverse #into the spider verse

[brainbuffering]

I see many able-bodied people and non-photosensitive people confused as to why the Epilepsy Community on Tumblr refer to the Spider-verse Franchise as being inherently ableist. I can understand that if you are not familiar with the term, you may find this disconcerting. The film is not actively saying that disabled people are bad, nor do I think that they are making an active decision to harm disabled people. I do not think that they are making a film with the deliberate purpose of killing disabled people! 

However, the active choices they make (e.g. not adhering to the rule that states that a flash rate of 3 - 30 per second is dangerous, and to avoid high contrasting patterns) are those which mean that Photosensitive People are barred from seeing the movie. This is a form of social discrimination. No, please, hear me out! 

Scope, a leading charity for disabled people defines ableism as: 

"A word for unfairly favouring non-disabled people. Ableism means prioritising the needs of non-disabled people. In an ableist society, it's assumed that the “normal” way to live is as a non-disabled person. It is ableist to believe that non-disabled people are more valuable to society than disabled people."

This is what the creators do. They unfairly assume that disabled people will have no interest in watching their film. They unfairly assume that the public will all pass on through word of mouth that the film is dangerous to watch for photosensitive people. It unfairly assumes that, because the majority of its audience will be safe watching it, those who are not safe do not matter as viewers or as people. It unfairly assumes that there Afro-latine People, Black People, Latine People, Jewish People, Women – the minorities the film chooses to represent – are all able-bodied and that if there do happen to be any people within those demographics that are also photosensitive, then they have no interest to see other parts of themselves represented on the screen in the same way. 

Disabled people already feel incredibly isolated by society. People, especially children, with epilepsy are often barred from social events. They cannot attend nightclubs, concerts, sleepovers, school trips, long haul holidays and so on. On bright sunny days, my incredibly Photosensitive Mother cannot even drive the car because the flashes of sunlight between the leaves of trees will give her a migraine that will take days to recover from. 

Therefore, when a company knows full well that their film is going to be talked about amongst the general public, that it is going to be a moment of cultural importance, to make a series of creative choices that knowingly bar disabled people from having this experience is a form of ableism. 

Ableism is not always obvious. In fact, it usually is not. Why? Because ableism is focused on leaving disabled people at home. It is focused on pushing us to the side, and making sure we are never heard from again. And in this case, it does take this to the extreme. Exposure to this film can indeed cause a Photosensitive person to die. This is not an exaggeration. 

3000 people a year die in the USA from epileptic seizures. 

And as I have said before, this is not a case of us asking to be allowed to sit at the table. We are not asking for them to introduce an epileptic spider person! We are simply asking to not be shot at if we try to enter the room, and asking that you please listen to us when we explain that pointing a loaded gun at a disabled person who tries to interact with you, is, in actual fact, quite an ableist thing to do.

#actually epileptic #actually disabled #spider-man #into the spiderverse #across the spiderverse #spiderverse #itsv #atsv #marvel