Dacey Nolan talks about epilepsy and her barriers on the web

Dacey says, among other things “If you’re going to include animated GIFs, I would recommend them not playing by default, but allowing the user to click a play button.”



Tenon

Thanks to Tenon for sponsoring the transcript for this episode.

Transcript

Nic

Hi, I’m Nic Steenhout. And you’re listening to the accessibility rule sound bites, a series of short podcasts. with disabled people explain their impairments in what barrier they encounter on the web. First, I need to thank Tenon for sponsoring the transcript for this episode. Tenon provide accessibility as a service. They offer testing, training and tooling to help fix accessibility fast. Today I’m talking with Dacey Nolan. Hi, Dacey, how are you?

Dacey

Good. How are you?

Nic

I’m good. We were on a panel discussion about the state of accessibility recently, and now we’re on my podcast together. We just can’t get away from one another.

Dacey

No, there was a lot of fun. And I learned so much he had really great perspective on accessibility.

Nic

Thank you. Let’s go for this. What’s your disability or your impairment?

Dacey

Yeah, so I was diagnosed with both ADHD and epilepsy. But today I’m going to be talking about my experience with epilepsy. So for those that don’t know, Epilepsy is a neurological condition that affects the nervous system. So when nerve cells or neurons send information to your brain, they do this by releasing electrical impulses. If the electrical activity suddenly increases, it’s called a seizure. So this can occur with many neurons are rapidly releasing those electrical impulses. So this can cause uncontrollable symptoms. And in most cases, it is life threatening, if the person is unconscious and hits their head, or there is something called unexplained death and epilepsy. So when most people hear the word seizure, they probably think of what’s called a grand mal seizure, which is the unconscious and the violent muscle contractions or convulsions. There’s so many different types. I actually have what’s called juvenile myoclonic epilepsy. So you get it when you start going through puberty. And that accounts for 7% of the types of epilepsy and is actually the most diagnosed. So we’re very, very, that’s a put in perspective, all the different types. So there’s also different types of seizures. So again, the grandma being one with the convulsing, there’s also one called absent seizure, and it used to be I think, call it was called something else. But that’s mistakenly for daydreaming, there’s also gelastic and Christic seizures, which is uncontrollable, laughing and crying, and then tonic clonic, which is like muscle stiffening. So for me, I have grand mal ¬†seizures, where, you know, I’ll go unconscious and have the convulsions as well as I do have muscle spasms, so my arms will like, move without me actually like doing anything. And they’ll be like really big jerks. Like sometimes, like if I’m putting makeup on in the morning, my arm will like fly away, and I have mascara all over my face. So each person is different in regards to what type of seizures they have, but also what triggers their seizures. So my triggers includes stress, lack of sleep, alcohol consumption, certain sounds, and I am photo sensitive. So photo sensitivity, that’s a weird word to say, ¬†is when seizures are triggered by flickering or flashing lights.

Nic

Thank you. Now I want to actually sidestep the main purpose of the show and I’d like to maybe do a short PSA as to what should someone do when they come across someone who’s in the middle of a grand mal seizure?

Dacey

Absolutely. Thank you for asking. Especially there’s so many misconceptions. I know, when my mom was growing up in the 80s, they used to tell people to hold their tongue. If y’all have heard of that, that that’s completely false as person with epilepsy, having a grand mal seizures, not going to severe their tongue, it’s physically impossible. But what you do is first and foremost, you know, you definitely want to make them as comfortable as possible put something under their head to make sure that they’re not flailing around. Try to roll them over on their side that way if they do have any kind of like spittle or things that they’re not going to choke on that. Again, not the tongue it’s just like fluids in the mouth. You want to let them just do their thing don’t try to stop it don’t put any weight on them. Make sure their surroundings they’re clear so they can’t hurt themselves. Also somebody might like urinate on themselves so protect their dignity by like covering up their their Like bottom half of their area, just have someone if you’re in pairs, really try to time it and then look for a MedicAlert bracelet, it’ll, you know, let them know, but let you know if they do have a history of this. Most of the time, if you know the person and they’re having multiple seizures, you don’t have to call the ambulance. But definitely, if it’s a first time seizure, or if someone is pregnant, or if you don’t know the person, it’s really good to call, you know, the ambulance 911. And the reason why we time it is because that’s valuable information to tell, you know, the paramedics, because if it goes over a certain length of time, they’re going to have to do more things. But most cases, it’s just going to be you know, a really quick like 30 seconds, it’s gonna feel like an eternity to you. But if they do wake up before paramedics, get there, don’t crowd them. There’s something that fight or flight really kicks in, when you’re waking up. You don’t know what happened, you’re embarrassed for me, I always cry, and then I’m angry with myself. And so just be very supportive, letting them know everything is okay. And try not to bombard them with questions like, How do you feel? What year is this? Because that gets very scary. But yeah, so just to recap, roll them over on their side, protect their head, and, you know, try to time and call the ambulance.

Nic

Thank you. Coming back to the main purpose of the podcast, what would you say your greatest barrier is on the web?

Dacey

Yeah, so what’s ironic is most web content is completely harmless to individuals with epilepsy. Now, with that being said, my very first seizure was when I was sitting at a computer, I was scrolling through social media. This was the time of, I think, examine MySpace, my friend texted me was like, Hey, I just updated my profile, can you go look at it, and she had this effect of the stars twinkling. And the last thing I remember, I’m waking up in the emergency room, and they told me I had a seizure. So what ends up happening is many developers use effects like flashing lights are flickering light effects, which could be dangerous to users. So some triggers for people that are photosensitive, are certain types of visual patterns, especially if they have a high contrast in color. certain colors, like the color red, and the color blue, and really high contrast, alternating patterns, especially stripes, you know, that are really high contrast, like a white and black next to each other. Also, you know, I always think of like flashing is, you know, like strobe lights, but even like a load or state like a spinner, that is going to have some flickers, and then also videos, animated GIFs, PNGs, and then those types of animations. So what’s really hard for me right now is going through social media. Right now, you know, reels are really popular with Instagram. So many content creators are trying to find like, how are we going to, you know, make engaging content and grab people’s attention. So they’re using a lot of strobe lights, a lot of flashing lights. The same with GIFs, I’ve seen so many GIFs with, really, you know, flashing things because you’re trying to get people’s attention. And so these are really very difficult. And so I don’t always have a seizure. I’m very lucky, I’ve been seizure free for about eight years now. But I’ve been having horrible migraines, and these migraines, are because of my epilepsy. And it’ll last for about, you know, from three days all the way to seven days. So you know, definitely interacting with these. Yeah, is, is not fine. And you definitely don’t want to have that experience. Like that’s my experience with watching grills. And that’s not a pleasant thing to have your users associate that kind of pain with your content.

Nic

That’s, that’s the thing I think that most people don’t realize is that you don’t have to actually trigger a seizure in your user to actually really ruin their life. Because if you if you trigger a migraine that send someone to a dark room and bed for a week, you’ve basically ruined their life. So you have to be really careful about what you’re doing.

Dacey

Yeah, and especially too like I was saying, I mean, there’s so many other different life threatening conditions, but you know, I when I had my first seizure, I was sitting on a stool and I fell and hit my head on my bed frame. And luckily, you know, my brother was in the room and was able to go and get help and said, you know, she hit her head. You know, even if it’s, you know, something like that you don’t know what people surrounding someone could be walking in a busy street on their phone. I know you’re not supposed to do that, but you just never know. And they, you know, can really put themselves in danger. And so I definitely think it’s very, you know, life threatening, not having things as accessible for people with epilepsy.

Nic

Yeah. One of the way the web content accessibility guideline addresses that is one of the success criteria talks about no more than three flashes per second, which, to me has always seemed not quite enough to, to talk about. And from what you’re what you’re describing, this is really the case that there’s so much more to it than that. So I think I think people need to remember, no, WCAG is the starting point is at the target here.

Dacey

Yes, especially, you know, when I go in and get tested periodically to find out how my epilepsy is going. So I have to do what is called an EEG. So they put these things all over my head. And one of the test is they put a strobe light in front of me, in the first part of the test, it’s a light that flashes, like, once every, you know, 30 seconds. So it’s a pretty big gap. And I have had brain activity or seizure activity, even when the flashes are that low. So yes, I think that what you’re saying that I think it was about three flashes a second. I yeah, I feel like that’s still not not enough, because any kind of like crazy light is going to happen in it in no, it happens with both natural light and artificial light. The weirdest thing for me is when snow is falling in the winter time and the light hits it. It also does this weird effect where so many people have seizures then. So yeah, it’s, it is one of those everyone’s different, like I said, sounds also trigger my epilepsy too. So it’s one of these, like, I guess, like a balancing act of like, how do you handle every use case?

Nic

Yeah. So if you had a message for designers or developers working on the web, what would that be?

Dacey

Yeah, so I’ve got about three. So the first one is utilizing a tool, it’s a free tool called photosensitive epilepsy analysis tool. And the acronym is PAT, or Pete. But devs can use this to identify potential photosensitive seizure risks. So I played around with a little bit there, there’s some really great information on like, how to use the test. And so really great tool, I wouldn’t rely heavily on just that, like do the test. I think a lot of people with that, you know, work with accessibility, they’ll tell you some of those tests, like definitely test for yourself don’t rely on a lot of like automated tools, things could always slip through the cracks. If you’re going to include like animated GIFs, I would recommend them not playing by default, but allowing the user to click a play button. And then also utilize media queries, because that’s going to give users control over certain web features. So I can put in my settings that I prefer reduced emotion. And so using those media queries is just going to help. You know, make sure that your users using whatever they want, as far as some of those preferences.

Nic

I love the idea of relying on preferred reduced motion to alleviate some of the seizure risk, because most of the time, we’re talking about this feature as a accessibility feature for folks with vestibular motion disorder. So it’s, it’s similar and at the same time, it’s different. I love that there’s more than one use for the tool. Thank you. Yeah,

Dacey

Yeah, of course. Thank you.

Nic

Dacey you’ve been fantastic. Thank you for all this information. And I’m sure I’ll see you around on the web.

Dacey

Yeah, thank you again for having me.