Out of curiosity, does anyone know anything about Epidiolex, or use it? It's a possible prescription for me, and I'd like to know as much as I can before actually getting it prescribed.

I recommend talking to your pharmacists about it. They often know a lot more about these meds than the actual doctors and can give you a lot of info and advice!

I don’t know if anyone else was made aware of this in the latest update for iOS but this definitely makes me so happy

Hey Anon, I don't think you are the antagonist. This is not taking space away from people diagnosed with epilepsy. People are not obgligated to know your trauma/medical history. And especially in moments post seizure, it is better to focus on getting into a safe and stable environment, rather than being bombed with questions and stuff. First off - Epilepsy and seizures don't need an identifiable "reason" to occur. Epilepsy is a cummulative diagnosis covering a multitude of seizure disorders (specifics to exist though). People with non-epileptic seizures are welcome in epilepsy community spaces in my books. No matter what may cause your seizures, I think it is better to stand in solidarity than alone.

Listening to someone who knows near to nothing talk about my epilepsy is almost like listening to a storybook…

The amount of times people have told me that I’M wrong about MY epilepsy is crazy.

Do you ever think people with epilepsy get so pissed when the 9000th game they've tried to play or movie they've tried to watch has the waring? Becuase I see that flashing warning almost everywhere.

I’m glad when there’s a warning because having no warning when it needs one is worse, but I also get frustrated that like… cyberpunk 2077 has the same amount of warning as animal crossing. Incredibles 2 has the same amount of warning as a considerate show with a scene with a few camera flashes. That sort of stuff. I wish warnings were better and more specific because everyone has different thresholds for what will trigger them.

I see, I want to clarify I meant it in regards to so much media having flashing not the warning itself

Oh then yeah, absolutely, the worst part is that when we bring it up as a criticism a lot of the times we get dog piled like “not every piece of media is for you”. Or “what did you expect?” Or “if you were really photosensitive you should know better than to play video games or watch movies”.

The amount of times the epilepsy community has pointed out how dangerous Spiderverse or Cyberpunk 2077 are (as examples, not the only ones) and how it’s not necessary and been met with responses like “but you can’t smother their artistic vision!“ or “so you want to take that scene away from the rest of us?!” Is honestly awful. These sorts of attitudes are super prevalent, so we honestly haven’t gotten much further than begging for proper warnings a lot of the time.

I like to say that the bar for inclusivity for people with epilepsy is at the center of the earth and companies still manage to tunnel under it because we’re currently stuck at a point where we’re begging for keep out signs. Not even to be part of the audience. And certainly not to see ourselves onscreen. I hope we can manage to progress to the bar at least being non the ground (meaning us being able to be part of the audience) but unfortunately I feel like things have been moving in the other direction, where flashing lights are only becoming even more prevalent.

(Sorry for the long reblog, I just have a lot to say on this topic)

Reblogging again because more people should see this

So I made a video about those things I've been thinking about related to Somerton's recent Response Video.

shameless self promotion, I actually made a video, especially after the ask about the fact that there's not that many known to be epileptic youtubers out there, I figured I might as well just rewrite the talking points of my previous posts. thanks to @brainbuffering for proofreading

@haikyuupaladin for checking out the script and in general for the mutuals and friends who gave me the audacity to insert myself into that situation like I have no shame.

Very Silly Concept: a show called "Accessibility Nightmares" but it's structured exactly like Kitchen Nightmares. An accessibility specialist goes to different establishments and helps them make their businesses more accessible.

The accessibility specialist asks why the door at the top of the small set of stairs has a wheelchair symbol on it. The owner replies that's the accessible bathroom. The camera zooms in on the specialist as they process this information.

A customer with a service dog comes in to a restaurant. The hostess tells them they don't allow dogs. The accessibly specialist looks over at the hostess like

And there are web accessibility episodes too. The accessibility specialist stares at the white text on the light pink background of the home page like

The specialist asks why not a single product picture has alt text, and the business owner says "Well I mean, it's makeup, why would a blind person be shopping for makeup?" The specialist just

The specialist asks the web designer how a screen reader user is supposed to complete the captcha portion of the password reset process when there is no audio alternative. The designer admits they don't know.

When you left this tag three days ago, I thought "that's so sweet, but no. No way this concept is even close to that popular."

[ID: Four pictures of Gordon Ramsay in various states of confusion. /end ID]

This is it. This is my job. This is what I do for a living. I make those faces and then I tell my uncaring monitor exactly what is wrong with this website and what the site owner needs to do to fix it with all the fucks I can’t put in official work documents sprinkled liberally throughout.

And now I will be picturing Gordon Ramsey when I do it.

Okay uhm - I need to say this because I am noticing this a bit in the responses to Somerton's "Apology" video. Do people really think, just because ableism in the workplace is forbidden, that workplaces don't discriminate?

Even if insurance stuff covers your health issues, I won't put it past an employer to let you go with the made up argument it doesn't. Because non-epileptic people are generally very uncomfortable with seeing seizure activity and some of them will prioritize their comfort over sticking to anti-discrimination laws.

I think Somerton's video is full of BS, but I am even more uncomfortable with how happy people are to dismiss Somerton's medical history/symptoms, just so they can argue against him. As if people with disabilities can be absolved for being dicks by accepting their stated medical and discrimination history.

When you don't even have to do so to point out the harm Somerton's logic does?

I mean - I think it's warranted to question James' statements because of his complicated relationship with telling the truth, but I am just kind of bothered by how people argue "this could not have happened because laws/policies" No. Let it have happened. It makes his apology worse if you choose to believe him on this, trust me.

If our response to disabled people acting terrible (stealing other people's material and presenting it as your own), is to accuse said disabled people of lying about their symptoms and diagnosis, I think we are missing the point and problem.

It's also incredibly difficult to take a company to court if they are discriminating against you, especially if they're a small independent one. So yes, I can absolutely believe that Somerton would be let go. i myself, have faced workplace discrimination because of my disability. Where I was told I was "not a team player" because of the procedures I needed to put into place to prevent seizures. My attempt to BE a "Team player" resulted in my seizure count trippling.

Beyond anecdotal evidence, I would like to point out that workplace discrimination is illegal in the UK too. And yet the office of national statistics show that only 34% of people who have epilepsy as their primary condition are in employment.

So for once, yes, there is plenty of site able evidence to back up Somerton's claims. As justepilepsy has said, we cannot start to question disabled people about their workplace experiences, nor fall for the ongoing rhetoric that if something is illegal than it never happens. The law is often just a slip of paper, and as any history student will tell you: De Jure change does not lead to De Facto change.

Sommerton's attempt to blame his disabilty for why he chose to take claim for the work of other people from minorities, to spread lies and falsehoods, and bully people into silence is despicable. He is trying to throw all other disabled people, specifically those with memory issues, under the bus with him.

Do not let him do so, on the pretense of social justice.

able bodied allies of disabled people when your disability genuinely has no secret upside and makes you useless to a late stage capitalist society

"disability only exists because the world isnt accessible" idk how to tell you this but chronic pain still hurts

i like the sentiment and i think its true in many ways, but people with mobility issues will still have mobility issues in an accommodating world, people with sensory disabilities will still have those disabilities in an accommodating world. and thats not including neurodiversity where two people with the exact same disorder will have very different experiences with them. like there's not a world where someone with agoraphobia wont be scared to leave the house just cause outside is more accessible

i dont think it accounts for the wide range of disability experience and caters more to low-support needs people. i think life would be so much easier if being disabled was less stigmatized, but disability wont just go away once it is

you can't autism proof a bright summer day, but you can normalize stimming and using sensory aids in public