Forums » Smalltalk » AMA: Photosensitive Epilepsy/Dysautonomia

<slams feet up on table>

whats up nerds how about i bring some rare medical conditions to the table. wouldn't that be spicy. wouldn't that be neat.

In June of this year, the grand seven year saga of "THE MAGICAL CONDITION NO DOCTOR CAN FIGURE OUT" reached its end and I was diagnosed with - okay this is a mouthful bear with me. "focal epilepsy of the temporal lobe with impairment of consciousness, intractable." Unfortunately shit has gone further down hill since then and it's also been discovered that I have secondary tonic-clonics in my sleep and in response to certain photo stimuli. oh and it's refractory. because my life sucks ig.

there's additionally the whole 'one of my hippocampi looks like a shriveled up peanut and my memory retention is out the window because of it' thing but i won't go into that here

But wait. There's more. They also identified POTS, a type of dysautonomia. (no, it's not the dramatic nonsense you see on TikTok where people cartoonishly swoon and faint elegantly to the ground. idk why the kids want to fake having it these days where did they even learn about it) My heart rate stays at 140-150+ while I'm standing. Yes, it's as uncomfortable as it sounds. It has bonus fun effects of an inability to regulate heat, constantly being drenched in sweat, chronic high blood pressure, and otherwise having my autonomic system frequently just full on bluescreen. It doesn't help that my seizures tend to have autonomic features, which obviously worsens the whole 'dysautonomia thing'. one time my heart rate went up to 200 during a seizure and everyone thought i was going to die lol

And like, I really shouldn't have to say this, but. Don't ask me to look at something and tell you whether or not it's photosensitive safe. Ask literally anything else. you do not need me to look at the porygon scene and say 'yes this is bad'

If you could snap your fingers and make the internet/world etc more accessible for these conditions what would it look like?

short answer: delete strobe lights. why do they even exist. WHY. they make normal people uncomfortable and they make me do the worm on the floor

long answer: As far as 'internet' goes, there's actually solutions available for most photosensitive problems (excluding video games but that's a whole different beast). I use Dimmer for nighttime browsing and to reduce the chance that if something sneaks in past my extensions, it's not going to be bright enough to bother me. I use a combination of an HTML5 autoplay stopper and .gif/mp4 blocker to prevent things from autoplaying. depending on how tired i am, i'll either use an extension that blocks them all together, or use one that gives me a 'killswitch' key which temporarily stops all .gifs on the page from playing until i scroll/change tabs.

most people on the internet are just d###s about it and will intentionally post flashy shit to be edgy, so it's a matter of taking my own measures to prevent episodes. photosensitive warnings are nice and all, but 99% of the population is too lazy to click that extra button and it's not something i can rely on lol. there's definitely some character profiles i've come across on here/on toyhouse in particular that really needed to add 'epilepsy warning' to their custom warnings, but again, extra work nobody wants to bother with.

As far as the world goes, again I reiterate: WHY DO STROBE LIGHTS EXIST. They're a photosensitive's worst nightmare because: they usually take up 90-100% of your vision field, you can't get away from them, they flash at a very high frequency, and they're strong enough that the 'cover one eye with your hand' trick is useless. October is a nightmare month for me because everyone associates 'spooky' with 'let's put strobe lights everywhere.' I made the mistake of walking into Spirit the other week and my brain almost immediately started going "ADOGJADF;GJOAFDGA" because they put the shit right beside the front entrance.

but yeah if i could delete one thing it'd be that. flashy gifs and videos are one thing because they don't typically take up enough of a person's vision field to be a huge problem. strobe lights, however, are literally a menace and do nothing but make everyone miserable. so i advise anyone reading this: don't be that guy with the strobe light decorations at halloween. don't. stop it. what is the appeal

edit: there's probably a mod salivating at the thought of going 'but luscin your custom warnings are set to off'. yes, yes they are because people don't use it for actual warnings most of the time. i saw 'veganism' once. there needs to be a specific 'photosensitivity/eye strain warning' button pls

What would be included in an eye strain warning? Just high contrast, or something else? (EDIT: Someone uninvolved in this thread sent me this link after seeing my Q: https://artfight.net/info/epilepsy and I'm finding it helpful too to see examples!)

yup, artfight is the go to example for what should be included. they have the best photosensitivity warning ive encountered because it lets you set levels (don't show at all, warn me before showing, just give me a heads up) and it saved me lots during AF. since it was as easy to do as pressing one button, everyone was very diligent in properly marking their submissions.

Now that you mention Artfight, RPR doesn't allow custom user menus so we can easily navigate away from profiles that aren't vision-friendly- Artfight does, but also has a button to de-weird a whole page if you need. How helpful was this feature?

TIL that such a feature exists on AF 🤡

had no clue that was a thing. definitely interesting. I'm not among the unfortunate 30% of photosensitive epileptics that has a response to certain static patterns (although i think that applies more to the 'optical illusion' type patterns? i dunno don't quote me on that), but I can see its use. I still think the best solution for websites with custom profile themes is to prevent .gifs from being used as a background, though.

TH, for example, has a problem with CSS profiles being able to apply .gifs as a background image. since the warnings there are custom and you have to write it in yourself, some folks are too lazy to go 'lol hey my horror themed character has a .gif background that goes "LFKLRFLERGKER", maybe don't click if you're photosensitive.' It's also a great example of why warnings (on applicable sites, such as AF or even RPR) need to be as simple to apply as possible. If it's not doable in one click, the average Joe isn't going to do it. It doesn't personally affect them, so they don't see any reason to go out of their way to write custom warnings. Which is unfortunate, but to be expected.

Overriding character/group themes has been sitting on my list for awhile, but maybe I'll bump it up! This is very interesting.

yeah this would actually be really neat if it's doable. Some of the custom themes here are hard on the eyeballs and make you have to either zoom in super far or hover 2 inches away from your computer (which i can't say i recommend for anyone lmao). I'm not sure there's a huge demand for it because y'know, aesthetics, but I think all five of us if we're being generous who'd use it would appreciate it.

alternatively, does the option for a custom theme's creator to flag their theme as 'photosensitive/eyestrain triggering' sound plausible? it kind of makes less sense the more I think about it because it'd most likely only apply to any themes made after such an update, but I was curious. seems like it could potentially use the same framework as character warnings - maybe even automatically apply the 'photosensitive/eyestrain warning' to any said character that uses the theme.

I know I'd be one of those five people who would use it. For example, the low contrast site theme gives me mega head aches - I know I don't test it nearly as often as I should to catch issues with it - but my crappy eyes strain really hard without some really strong contrast. But of course, there are plenty of folks for whom using anything BUT the low-contrast theme is a misery. And low-contrast text to background ratios seem very very popular for folks designing and using custom character styles, but I basically have to read profiles that use those styles through the code view, or go in and live-edit the colors in my browser if someone asks me to review those profiles for moderation.

Yeah, this does sound potentially plausible. I hadn't thought about it before, but I am definitely pondering now.

Vaguely related: I've had on my list for awhile the ability for people to add a short description of WHY they tagged their gallery image as needing a warning before viewing, so that potential viewers have more information to base their decision to view on. I was working on it earlier today and added "flash warning" to my list of examples of things that someone might want to put in there. But like you said, just asking people to type it in themselves as an optional thing isn't likely to be that much of a help to the people who need it most, because it requires other people not just to care but to KNOW what qualifies as needing a warning. I definitely didn't know nearly as much about what might need a warning yesterday as I do after this topic. This is just to say that you might see that language on that feature when it rolls out shortly, but also that I hear you that just adding a textbox with that suggestion really isn't cutting it for this specific issue.

hmmm, operating on the basis of "assume people can't be bothered to type in warnings", I think an eventual addition that could be used to support custom mature content warnings is a model similar to AF? i know i keep tooting its horn but i just really appreciate its accessibility ok.

In its current state, I presume a lot of folks have turned the mature content filter off because it ranges from 'middle finger' to 'graphic, explicit intercourse" and you're essentially playing russian roulette with no way to tell what the image is gonna be. One way to remedy that is requiring users to choose the warning the mature content image falls under (violence/gore, profanity, sexual content, or eye straining) before it can be uploaded? I think from there, letting users opt in/out of the specific mature content they are or are not okay with seeing is great. sort of identical to how the actual profile warnings work, I guess - like how I don't want to see warnings for violence, gore or profanity, but I DO want to see warnings for photosensitivity, nudity and sexual content.

i dunno how that'd affect mature content images that are already uploaded, though. i'm assuming it'd probably cause the entire server to just explode. shit i think i accidentally turned this into another 'campaigning for accessibility features' thread why does this keep happening

I hadn't seen AF's stuff until yesterday, but I'm for sure looking at it further to see what lessons I can get there!

The last decade+ of how things worked previously absolutely make it slow and painful to turn the ship sometimes, even when I learn there is a better way we could be doing it. It's not impossible, but it does mean some things end up being slower than simply banging out the code to make it possible. Which is a shame, for a lot of reasons, but also because rapidly slamming out code to help with QOL is one of my favorite feelings.

Images being simply marked "mature" and not anything specific came about after my feeling that a lot of people were acting like picking one of three options was too much work, or if their profile was kind of blue but not for a named reason, it just didn't have... anything... And as you say, this has turned out to also not work, because even though more people DO bother to mark their stuff (and the mods have an easier time spotting when it isn't marked), it has also resulted in the outcomes being useless to viewers a lot of the time.

I'm wondering if a hybrid approach would help here, where when you hit mature, it asks what kind of mature, and pops whatever button you click into the text input for you... but if one of the buttons doesn't describe it, you can still type in your own custom thing? Then we have no need to type under most circumstances, but the option to if necessary/you care to.

Nah, I barged into your AMA and started asking your opinions about development stuff for the RPR instead of about your daily experiences outside of my website. No need to oh shit about anything

*bursts through a wall* I DID THE THING I SUBBED IN BUTTONS INSTEAD OF A TEXTBOX

oh shit it actually works first try


verified that it works while logged both in and out too

What's the worst experience you've had involving unwarned eye-strain