“There’s not one single experience of being disabled” – creating our End the Awkward campaign

End the Awkward is back for a third year and once again we’ve based our campaign on the real life experiences of disabled people. Over the past few months we’ve gathered ideas and tested content, through focus groups and conversations with a variety of people.

In this blog, two of our End the Awkward ‘testers’, Jack and Jamie, talk about why it was so important to be involved, their thoughts on the campaign and some of their own awkward stories.

Jamie

I was excited when I was asked to participate in a focus group discussing the future of End the Awkward. The group organisers were keen to hear our opinions and clearly valued our input. We discussed not only the message and overall impression that we thought End the Awkward 2016 should convey, but individual details such as the setting, dialogue and disabilities portrayed. As the group contained people with differing impairments, the discussion highlighted many points that we may not have thought of individually. There is not one single experience of being disabled and I was pleased that our different impressions could help avoid a tired or clichéd message.

Jamie, a young man with glasses and a beard, smiles at the camera

Like many disabled people, I’ve experienced awkward moments around other people who don’t know me very well. This often means a well-meaning person saying completely the wrong thing, or polite people, scared of doing something rude, avoiding me altogether. Sometimes, this makes me feel guilty, as if I was responsible for their awkwardness. I know this is ridiculous, and that I don’t control others reactions, but this limited communication makes me look internally for an explanation. End the Awkward, for me, suggests that this tension does not have to happen. Though embarrassing situations may still occur, instead of worrying about them, we can point to them and laugh.

Several years ago, I was out for a birthday meal with friends, when the staff come over to sing Happy Birthday. Even the sight of this happening to other people makes me embarrassed, so I was already cringing when the waiter asked me to stand on the table. As my impairment includes invisible mobility problems, I couldn’t do this, but the staff mistook this as shyness and insisted that I at least stood on my chair. After some panicked looks from friends and a brief explanation about being disabled, the staff looked absolutely mortified. I told them that they had given no offence and they sang anyway, though slightly nervously. In the end though, I got a free slice of cake, which tasted like a silver-lining.

Jack

With the next phase of End the Awkward on the horizon, what better way to capture some of those life experiences from disabled people themselves, to ensure the campaign is reflective of everyday challenges we might encounter.

Jack smiles at the camera

In July, a selection of people came together to shape some of the latest developments in a focus group. Facilitated by the creative agency George & Dragon, the main purpose of the discussion revolved around new film concepts, which will be targeting young audiences in particular. As shown by past research, one fifth of 18-34 year olds have admitted to actively avoiding a disabled person in conversation. In one way or another, everyone had at least one memorable moment that felt socially complicated.

Whether it revolves around nights out, failings on public transport or people just making life harder than needed, there are still many barriers which make this a necessary campaign. We all agreed that the disabled person in each of these scenarios needed to be seen in an empowered role and not to appear as a victim in any sense.

While I’m not disabled physically, the preconceptions of people about my interests and abilities, as well as reluctance to disclose my condition in many situations means that I sometimes have to meet demands of people like there are no limitations. One day I would like to think there will be no need to always explain basic autism facts, but until then, we need campaigns like End the Awkward to start some of those tricky conversations.

Want to get more involved in End the Awkward? Share your awkward stories with us

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.