Tag Archives: awkwardness

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?

 You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

That awkward moment when… the station attendant follows you into the loo – #EndTheAwkward

Guest blog by 35-year-old Sam who lives in St Ives, Cambridgeshire with her husband and three children. Sam has symphysis pubis dysfunction (SPD), meaning the muscles that hold her pelvis together are too relaxed and she needs crutches or a wheelchair to get around. Here she shares some of her awkward stories as part of our End the Awkward campaign.

That awkward moment when…

PeoplMother and daughter standing together in a garden, the mum using crutchese want to fix you…

When I’m using my crutches, virtually every day someone will ask me, “Oh what have you done?” usually in a very sympathetic voice. My reply is always the same “I haven’t done anything. I have an unstable pelvis which is a permanent disability”.

People are just taking an interest and they don’t mean anything by it. But sometimes I feel like being mischievous and saying “I was awful in a previous life and I’m being punished!” Of course I never do!

My daughter gets really tired of people asking me about my crutches. So for Christmas she bought a white t-shirt and customised it to say, “Yes, I use crutches. Get over it!” It was very sweet of her.

The helpful staff follow you into the loo…

I was at King’s Cross station and needed to use the loo. A helpful member of staff opened up the barrier for me to get through to the accessible toilet. He also came round and started pushing me, which was kind but not necessary because I can self propel my chair.

We got to the accessible toilet and he opened the toilet door. He then pushed me into the toilets and we were both in there together, when the door closed behind us we looked at each other like, “Oh right, now what?”

He very quickly got all flustered and said, “Oh right, thank you!” and left. His heart was in the right place, he was trying to be supportive and help me. It’s just slightly uncomfortable being in a toilet with a stranger!

The whole world knows you’re disabled…

I remember one occasion when we went to the cinema and the queue to get in was massive. A member of staff came over to me and asked if we would like to go through straight away so that I could sit down. I thanked her and said “yes please”.

We started to walk past the queue and we could hear people muttering “where are they going? Why are they getting through?” So the member of staff proceeded to shout so that all of the queue could hear, “she’s on crutches!! She’s using crutches!!”

I was pretty sure nobody in that queue had a sight impairment and could probably see I was on crutches. That was a pretty awkward moment as there were about 200 people staring at us!

People would rather talk to my husband…

Sam smiling with her husband, both holding drinks
Sam with her husband Will

My husband, my three children and I were in London for the day and wanted to go to a special restaurant for lunch. I called beforehand to find out if it was accessible and they informed me it was and reserved us a table

We arrived and went to the maître d’ where I explained I had reserved a table. She then looked at my husband and asked him if we could use the stairs.

So I answered, “I can but if it’s at all possible I’d prefer to stay in the chair. The stairs a bit steep.” She looked at my husband again and said “That’s fine. I’m just going to call someone who will take you to the lift.”

The disabled access is past all the bins…

The disabled access was in a completely different place to the non-disabled access and it meant we had to leave the children in the restaurant whilst my husband and I were escorted to the right place.

This was outside the restaurant and a bit further down the street, past where all the rubbish was stored.It absolutely reeked and the staff member escorting us was very apologetic!

When we reached the lift it was one of those old fashioned service ones with metal doors. On our way down you could hear the staff at the bottom shouting, “Someone in a wheelchair is coming! A wheelchair’s coming!”

Obviously the member of staff was mortified but as the whole thing had felt a little like we were in a comedy sketch we couldn’t help but laugh!

Sam with her husband, two sons and daughter

You don’t get searched like everyone else…

I’ve noticed that whenever I use my wheelchair at an organised event, I never, ever get my bag searched. When my cousins and I all went to see the Spice Girls, they each in turn had their bags checked but for some reason I didn’t!

We all had bottles of water and my cousins were told they couldn’t take them through to the arena, however the member of staff bent down to me and said, “Oh, you can take your water through”.

It’s an interesting insight into other people’s awkwardness around disability. The fear of offending a disabled person is worse than a fear of a bomb going off – I find that absolutely fascinating!

Do you have an awkward story to share? Submit your awkward stories, and we’ll publish our favourites on our blog and social media.

Find out more about how Scope is ending the awkward this summer.