Tag Archives: seizures

“I hate it when people fake” – and other things you hear as a part time wheelchair user

Chloe is a student and blogger, creator of Life as a Cerebral Palsy student and an Ambassador for CP Teens. 

She has mild cerebral palsy, seizures and sometimes uses a wheelchair. For End the Awkward, she talks about some of the awkward moments this brings and how a balance of education and humour is the way to improve attitudes.

People often think I’m drunk

I’ve had various nights out where people thought I was completely wasted. I have cerebral palsy but I can walk unaided, with my stick. On a night out I don’t tend to wear my splints. I probably look ‘normal’ when I’m sat down and when I stand up people are shocked. People assume that, because I’m on a night out with friends, I’m drunk, when actually I can’t drink a lot with the medication I’m on anyway. At most, I might be a bit tipsy but bar staff will say “Oh you’ve had one too many”.

I tend to go one of two ways – I either make a joke, like “Oh yeah I guess I am… wonder why I’ve got this stick though” or I just say “Well actually I have cerebral palsy, I’m not drunk”. To which they’re usually like “oops”.

Misconceptions about wheelchair-users

Once, I was out clothes shopping with friends and I was in my wheelchair. My friends went one way to look at something and I was looking at a dress. It was on a higher hanger so I was leaning forward, not even standing up, just reaching and this woman looked at me and said “Ugh I hate it when people fake.” I was thinking “What?!” and obviously my friends weren’t there to back me up. I said “Excuse me?” and she said “Well you know, all these people pretending” and I said “Do you know what a part time wheelchair user is?” and she still didn’t believe me. I was just a bit speechless so I just went in the opposite direction.

Should we carry you down the stairs?

I’ve been at a restaurant where there were stairs to go down and the waiter came over like “We could carry you down the stairs?” so I said “I’ve got my stick, I can get down myself if that’s okay” and he just stared at me. I was like “I can walk. I may be exhausted by the time I get to the table but then I can sit down for the meal and I’ll be fine. And he was like “Oh… okay… so do you want me to carry your chair” and I said, “Well yes, that would be very helpful”. I’m amazed by how many people still think you either use a wheelchair all the time or you don’t, or you can either walk or you can’t.

Photo of Chloe in her wheelchair, wearing her leg splints

Fear of the unknown

Because I also have seizures I get avoided quite a bit – people don’t want you to go unconscious on them! It can happen anywhere, like in the middle of busy city centres! There can be warning signs but it varies. I have three different kinds of epilepsy. It can range from “Sit me down now, I’m about to pass out” to no warning whatsoever and I’ll just fall.

I definitely think it’s more a fear of the unknown that anything else. People aren’t sure what to do if it happens so they don’t want to be in that situation. There are so many different kinds of seizures. People think about the ‘typical seizure’ but a lot of mine aren’t like that. So they don’t really know what’s going on. Their instant reaction is to call an ambulance or stare at me, neither of which is helpful. I rarely need medical intervention.

There’s no need to avoid me though. Once I collapsed on one of my friends and she wasn’t sure what to do but I came round and it was fine. She knew that I had seizures but she’d never actually seen one until then. She just joked “A warning would have been nice!” and now she’s used to it.

Ending the Awkward

I think you have to use it as an opportunity to educate people but maybe with a slightly humorous twist. You don’t want to be too serious because I think they’ll just go “Right I’m avoiding doing that again ever in my life”  but if you laugh it off too much they might not realise that what they’ve done is bad. It’s about getting that balance right.

To hear more from Chloe, visit her blog. 

Read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story. 

I’m not a hipster, I’m epileptic! – End the Awkward

Bekki is 21 and an intern in Scope’s Campaigns team. She studied History at Oxford University, exploring disability and discrimination.

For End the Awkward, Bekki shares her own experiences of awkwardness and explains why there’s no need to hide from disability.

Awkwardness is a natural part of human interaction. However, when it comes to disability, awkward encounters often take on a slightly more negative tone.

Some conditions fall into a grey area between visible and invisible. Like mine, I have photosensitive epilepsy which you might not know just by looking at me. But I do have to use aids, such as specialised sunglasses, in order to go about my everyday life.

On top of this, there’s the stereotypical view that an epileptic seizure is always a convulsive seizure. In fact, there are over 40 different types of seizure which all look very different. This can be alarming and confusing if you aren’t familiar with them.

People often overreact when I have seizures

I have three different types of seizures; convulsive, prolonged partial and partial. Partial seizures happen most often and these are the ones I often encounter problems with.. They occur between ten and twenty times a day and can range from blank staring, to violent head shaking, or my eyes rolling back into my head.

During my more ‘alarming’ seizures, I’ve had people yell “WTF, are you the possessed or something?!” followed by that person rapidly removing themselves from my presence to avoiding assisting me because “I must have done something to deserve it”. I’ve even had religious officials telling me they’ll pray for me or making the sign of the cross at me, so I don’t go to hell.

Rebekka smiles at the camera

I’m not hungover, I’m epileptic!

The more typical responses I get are based on assumptions about why I’m wearing my sunglasses or using a Mac computer. They’re not what traditionally spring to mind when someone thinks of accessibility aids.

Because I wear my sunglasses on overcast days, during the winter months or inside, and can only use Mac computers (due to different pixel technology), I can no longer count the number of times I’ve had to say “I’m not a hipster or hungover, I’m epileptic”.

I’ve even had to avoid wearing hats because of the comments I get and the ease at which people can remove them from my head.

Avoidance really isn’t the answer

There is a reason why priority seating signs on transport and in bathrooms have been changing their disability signs. In the twenty first century we have begun to recognise that there are a range of different access needs and we shouldn’t make assumptions based on traditional representations of disability.

Some people may have never seen a seizure before, but street harassment and avoidance isn’t the answer. This only isolates disabled people further and makes everyone feel awkward about something that can’t be changed. It may look weird to you, but it’s part of my everyday life. And that’s okay. I came to terms with it a long time ago and often laugh about it with family and friends.

Engage with the awkwardness – it’s a fact of life, not a fact of disability. Maybe next time, talk to me instead of comparing me to a demonic entity?

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