#epilepsy awareness day

[haikyuupaladin]

Tomorrow is epilepsy awareness day and while I will most likely spend some time today prepping a fandom type post for tomorrow (I find that attaching fandom to my awareness posts makes people outside of the epilepsy community more likely to interact and learn), I would also like to issue a challenge to anyone who sees this post for tomorrow.

Try to avoid flashing lights all day tomorrow.

While statistically most people with epilepsy are not triggered by flashing lights, I’m issuing this challenge because it’s the easiest common trigger to use to demonstrate how difficult it can be to avoid triggers in a short timespan. It’s also one of the triggers that society could most easily change to accommodate if people were more aware and cared more.

[kunaigirl]

Ok, not gonna lie but this drawing that I just finished means a lot to me. It's autobiographical, and it's based off of this one of the specific time I remember as a kid! For those who don't know, I have epilepsy and got diagnosed when I was just a baby.

My childhood was filled with week/ month long seizure studies at the local children's hospital, and since I've been getting those same seizure studies done again as an adult, I started thinking about those times when I was a kid again.

I remember as a kid, I would get really upset and annoyed at all the wires on my head and especially how much the glue and pressure hurt after a while, until it hit me. The wires gave me rainbow hair! I was 5 years old, and I finally reached a realization that made me hate it a lot less! Thinking about it again, I decided to draw what I remembered!

Also the Betty Spaghetti dolls are important to the memory too. They had plastic wire-like hair that was colorful! Playing with them is what gave me the idea that my wires could count as "hair" too!

Note: This was back in 2000. Currently with studies like these you can carry around the device that connects all the wires in a pocket so you could move around. As a kid, they had to stay connected to the wall at all times or on a huge device that could only be moved by the doctor. Again, I drew it how I remembered it!

[sometimesraven]

Epilepsy Awareness - Writing Seizures in Fantasy

Sometimes in writing, an author will ‘discover’ things about our characters as we go. Usually it’s midway through a novel, when the character turns to you and says “hey did you know this fact about me that will completely change the narrative?” and you promptly set fire to your computer. Another, more mentally stable event in which this can happen is what recently happened to me: you know…

[thelofian]

Dulcet Daily Booster Table (TTCC DBT) for 2024-03-26, Activi-Tuesday, 🎗💜 Epilepsy Awareness Day · Purple Day | 🎩 Wear A Hat Day

[epilepsy-and-me]

[shami1412]

The Anchor - A Journey Through Epilepsy (Short Film)

Here it is everyone, my documentary short film!

'The Anchor - a Journey Through Epilepsy is my first short film, made with the hope of creating awareness on Epilepsy and inspiring people like myself to find their own anchor. This is my story but also the story of many others. Today is Purple Day aka Epilepsy Awareness Day, so here is my contribution.

[needlefail]

Accidentally posted this a day late but March 26 is Epilepsy Awareness Day aka Purple Day 💟💟 Enjoy this little doodle of Kiri with his service dog who will never not be crushing his lap despite being nearly twice his weight

It’s important to spread awareness about epilepsy so even after March 26 be sure to continue educating yourself and others on it as well as supporting those who do have it!! I think some people really tend to underestimate how impactful it can be so reminder for the love of god tag flashing lights/colors for those who need it 😭

[glitchdollmemoria]

do people who disregard photosensitivity realize that seizures can fucking kill or do they just not care. do people not realize that their "aesthetic" "cool" flashing lights that happen without SUFFICIENT warning... are fucking capable of killing people. i dont even care if i sound pissy right now because i am pissy, im sick of feeling like myself and others with epilepsy arent even afforded the right to be an afterthought to most people. im not even photosensitive but ffs this shit makes me so angry.

seizures themselves can be deadly if they go on too long, theyre essentially electrical overloads in the brain, you know, that organ that controls the entire rest of the body? and seizures can result in injuries or death from falls. from choking on our own vomit. from drowning in our own bathtubs, if we think we might be safe to bathe and then get proven wrong. maybe someone just wanted to watch a video or movie while they took a spa day.

did you know that epileptics are more likely to die younger than those without epilepsy, with all those risks and more? and have you heard of SUDEP? sudden unexpected death in epilepsy, death without a known cause, a rare but very real possibility for us. it kills approximately 1 in 1000 epileptics a year, if not more since it may not be accurately tracked. thats thousands of us dead a year. we do not need you to add to our death rates.

"all these things are known risks, epileptics just have to be more careful-" epileptic people should not have to be on constant fucking high alert. how about instead, people just learn to give a shit about life threatening disabilities? it takes so little effort to just offer a CLEAR and VERY OBVIOUS warning AHEAD OF TIME, for a SIGNIFICANT AMOUNT OF TIME, before your stupid flashing lights. or just dont add them at all. are they necessary? are they really necessary? would you really fucking rather photosensitive epileptics have to be constantly on guard, IMPOSSIBLY on guard, rather than you just considering their safety? nobody can anticipate every instance of unexpected flashing lights they might come across. but you, creators, are able to provide warnings, and if for any reason you arent, then hire someone else to edit the warnings in or just get rid of the fucking lights altogether.

again, my epilepsy is not photosensitive, but i will never stop being protective of my photosensitive siblings. my own life is scary enough with the form of epilepsy i have, i cannot imagine how terrifying it must be to have to maneuver through the world with photosensitivity, and i dont want careless assholes to go killing my fucking community because you dont give enough of a shit to worry epileptic people. i am pissed off and emotionally exhausted and the shit with elon musk having a flashing gif on his twitter account was the straw that broke my back today so youre getting a pissed off PSA. everyone better start doing a whole damn lot better.

link to the CDC page about SUDEP

link to the epilepsy foundation site page about seizure risks

people without epilepsy are encouraged to reblog but know that i am already angry and will not tolerate bullshit on this post. give a fuck about other peoples lives and safety or im blocking you.

[roamwithahungryheart]

Today is Purple Day for epilepsy awareness.

My fellow epileptics, take a moment today to appreciate how strong you are. And remember, through all your struggles, you are loved 💜

[solarflare-kjrp]

If you are going to hold a concert, don't be a dick. Give strobe and flash warning

[haikyuupaladin]

Today is epilepsy awareness day! I wasn’t able to come up with a fic or edit or anything for today, but I would like to take moment to encourage people outside the epilepsy community to take some time to learn about epilepsy. Scroll through the epilepsy tag for a bit if nothing else. And also, please remember, the best way to tag gifs and videos containing flashing lights is to tag it with flashing lights.

I am also going to take a moment here to point out that I have been emailing back and forth with @support for over a month now trying to find a more efficient way to get accessibility issues regarding photosensitive epilepsy addressed than sending an ask to @wip, as I also sent an ask to them over a month ago with zero response.

You see, there are two major problems with disabling autoplay right now: you can’t do it on desktop tumblr, and there are a lot of categories such as ads and post previews that still don’t have autoplay disabled. These are a major safety and accessibility concern when it comes to photosensitivity.

Tumblr’s response to someone else’s ask about being able to disable autoplay on desktop was that since you can do it through most browsers, they don’t have to implement it on tumblr. But there are a lot of reasons why disabling auto play on a site by site basis is more practical than disabling autoplay on a browser by browser basis.

For example, if I’m using tumblr at the library, it might not always let me change the browser settings or I might have to change the browser settings every single time if it does let me. Or maybe the browser method of disabling autoplay also blocks certain image types that are important for me to be able to see on a website that I know I don’t have to worry about having gifs or videos at all. Or maybe I have to use a device I don’t normally use to log into tumblr and forget that it’s not my usual device.

And then by not disabling autoplay of every usage of gifs and videos, users are put at risk. There was a SiriusXM ad going around for a while that contained a lot of flashing lights, even though this is technically against tumblr’s ad policies. Or another category that doesn’t always get disabled is blog backgrounds, so if I go to block a blog because I know they won’t tag their flashing lights, and then the background of their blog is all flashing lights, that’s another major issue. (Or if I go to send them an ask explaining why they should tag their flashing lights).

Tumblr is the place I’ve been able to find the best epilepsy community online but we need the help of people outside the community to let us be safe here. Please help us get staff to address the issues with autoplay, and please tag flashing lights appropriately. As I said in my post yesterday, I’m aware that not everyone with epilepsy has flashing lights as a trigger, but it’s a common, well-known trigger that society could accommodate for if people put more pressure on organizations to make those accommodations. Please help us make tumblr a place where we can expect those accommodations.

[brain-buddies]

[xemnote]

Is there a way to complain to Netflix that their photosensitivity strobe lights warning needs to be longer and more in my face because the amount of times I don't even notice it, or if you skip the intro it glitches out and makes it not appear.

The number of times I just thought they didn't put one up because I did not see it is not good.

I didn't see one when I watched Squid Game Episode 4 when that came out (that messed me up), and I'm glad I had my friends to warn me about Black Mirror Episode 4 because when I went to double-check if that had one, I actually missed it 2 times before I finally saw it the 3rd attempt to triple check before complaining.

Also speaking of Squid Game Episode 4, some kind soul on YouTube edited out every single flash from that scene. It's so nice to actually know what happens finally.

Now I just need someone to do that to Black Mirror episode 4.

[casinoarcs]

Can I ask really niceys that more people hc bsd Fyodor with epilepsy. Even if you do nothing with it just keep it in ur mind maybe? Cuz real life Dostoyevsky was very loud and proud of his epilepsy and it just pains me to see so many people learn abt him from an anime boy without ever digging into such an important part of his life….

[epilepsy-and-me]

[anonymouslydisabled]

International epilepsy day falls on the second February every year, this year it falls on the 12th. If you consider yourself a disability ally or are curious to learn more about seizures, I'd really appreciate you doing even one simple thing to learn more about epilepsy on this day.

A few ideas are to watch this short film on epilepsy, trigger warning for injury and like a tiny little bit of gore? https://www.youtube.com/watch?v=tfy4_mq_yX8

Learn about the different forms of seizures, especially non-convulsive ones like atonic and absence seizures.

Learn about drug-resistant epilepsy

Learn about historical figures who likely had epilepsy like Harriet Tubman and how their disability impacted them.

Learn seizure first aid, one in ten people will have a seizure in their lifetime and this information could be life-saving.

Tag any posts with flashing lights with #flashing lights and really aggressive neon colors with #eyestrain.

If you're posting this content on YouTube add text that says what time the person can skip to for the flashing lights/eyestrain to be done.

If you're posting on tiktok have at least a 5 second period with big text that says "flash warning/eyestrain warning" before the flashing lights start.

If you're posting on instagram make the first slide something with large text that reads "flash warning/eyestrain warning".

Learn someone's epilepsy story. You can find some of these on epilepsy websites like epilepsy society and epilepsy foundation.

Donate to an epilepsy organization such as the ones mentioned above!

If you know somebody with seizures, reach out and ask them if there's anything you can do to accommodate them.

Never wear any sort of accessory with a flashing light on it such as a headband or glasses.

If you have seizures or epilepsy feel free to add on to this list!