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Disability Narratives

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Audio clip: Maeve finds that people’s preconceptions of how epilepsy affects her can be problematic.

It's a bit of a weird disability, because people have strange preconceptions about it, and don't really understand it. And they can't see it, so they don't think that you have a disability. So if you say "Oh, I've got a disability." They're a bit like, "There's nothing wrong with you." [Laughing]. You know? "What are you talking about?"

And then you have to explain it, and they think 'oh, it's just flashing lights'. And it's like "No, it's way more comprehensive, and sort of infringes in your life in ways that - you know - you wouldn't normally think about when you think about epilepsy."

[Laugh] I've had some strange reactions in the past. One senior female academic, I said to her that I had epilepsy, and she said "Oh, like this?" [Laughing].

So I didn't really know how to respond to that. Most people - actually, a lot of people have some knowledge of the condition. They'll be like, "Oh, I've got a friend who has epilepsy, or a family member," or something like that. Or if they don't know much about it, they'll just say, "Oh, can you not look at flashing lights." Or things like that. So people know what it is, but they tend to not know the specifics of it. Unless they're sort of closely related to someone who has it, or they have it themselves.

And Mmm. I have a very probably similarly vague understanding, that there's different types of epilepsy. And so, people are - oh, I know someone who's had - and it might be quite a different type of epilepsy. Is that a difficulty too?

Yeah, that's right. I mean, it's completely different for every individual that has it. And that's again, something that's very difficult to get across to people. So, some people will have seizures every day. And very basically can't live a normal life. Other people might have two seizures in their whole life when they're diagnosed with epilepsy. And people have like different triggers, as well - different things that'll cause it. So for some people, they are very photo-sensitive, and it'll be not just strobe lights, but say they're sitting on a train, and - you know - if the light comes through the trees, and get this kind of flashing light effect, they can have seizures from that. Some people have pattern-sensitive epilepsy. Which I potentially have, but we're not quite sure. Which is looking at - you know - patterns, can trigger a seizure. And I think I might have that, because I've had two seizures on escalators. And I think looking at those lines, I find that quite difficult. Yeah. So, and people don't normally associate sleep deprivation, or just general sort of tiredness or - you know - over-work and stress with epilepsy. But I think for most people actually it's stress that will trigger their seizures.