Recently I've been starting a body of work about the experience of growing up with epilepsy. This has included a show about my experience called "Can You See Into a Black Hole?" and an industry survey which I sent to theatre organisations and individuals to do a preliminary exploration about epilepsy awareness in theatre.
Here's my breakdown of what happened question by question.
(Someone pointed out contemporary practice is not to use epileptic as a noun but use "person with epilepsy" since I wrote this survey so for this report I've re-phrased some of the questions to reflect that change)
1) Do you have epilepsy or do you seizure because of another condition?
YES - 8.5%
NO - 91.5%
I engaged a relatively small amount of people with epilepsy though I did specifically ask people who work in theatre to fill out the survey which might be demonstrative of epilepsy representation in the industry. The sample size is probably not big enough to draw this conclusion but it's interesting if you recognise that about 6.8% of the world's population has epilepsy.
If you answered yes to the above then please give details about and barriers you have faced accessing theatre as a person with epilepsy.
There were actually some positive stories in this which was nice but there was also "scared incase I have a seizure during the performance" from one person. This reflects the conversations I've been having with people with epilepsy across the country, that they don't feel confident that theatres could safely support them during a seizure.
2) Do you know anyone with epilepsy?
YES - 74.5%
NO - 25.5%
In stark contrast a lot of people know someone with epilepsy so you might expect that there would be an awareness of epilepsy in theatre.
3) Do you feel like you have a good understanding of what epilepsy is as a medical condition? For example, do you understand that there are different types of seizures.
There were five discreet options to this answer.
1 = I do not know what epilepsy is
5 = I have a detailed understanding of epilepsy
1 = 2.1%
2 = 17%
3 = 40.4%
4 = 25.5%
5 = 14.9%
This question is obviously very subjective as it depends on the person's perspective of their knowledge. More people tended towards the knowledgeable end of the scale which was good but only 14.9% of people thought they had a detailed knowledge. I think you can get a relatively comprehensive understanding of epilepsy (in the non-scientific world) quite quickly a lot of the time so I think there's a real opportunity here to move a lot of these people into that top bracket quite easily.
4) In what capacity do you work in theatre?
Programming / Commissioning - 2.1%
Operations / Management - 6.4%
Front fo House - 14.9%
Participation / Community - 10.6%
Access - 6.4%
Producing - 21.3%
Technical or stage management - 21.3%
Performer / Musician - 29.8%
Maker / Writer / Director - 40.4%
Producer / Administration - 12.8%
Finance / Business - 0
Other - 4.3%
I do no work in theatre - 2.1%
There were very few correlations in this question that suggested there were strengths and weaknesses in any one part of the industry but there was one interesting trend in the individual responses.
-All the people who answered the survey who have epilepsy said they were a "Maker / Writer / Director" (amongst other things but this was the common strand). Anecdotally I do see that there is sometimes a focus on bringing artists with disabilities or chronic conditions into theatre as makers but not necessarily as decision makers at management level or as programmers, I think it would be great to see more of these gatekeepers positions occupied by people with epilepsy.
5) Have you had any training specifically regarding people with epilepsy?
YES - 42.6%
NO - 57.4%
It's worrying but not unsurprising to see that only 42.6% of people feel like they had any training regarding epilepsy, I think beyond First Aid courses which normally teach the very basics of how to react to a seizure, there is little to no information currently about the epileptic experience of theatre and theatre buildings. People can't be expected to have received training because very little is available.
If you received training please give details
The majority of people had a First Aid course listed as this answer, exceptions were.
-Medical Degree (Well done)
-1 person said strobe awareness (I would be really interested to hear what this was)
-1 person had a "course on epilepsy and theatre lighting" (Again, if you're out there I'd be really interested to hear about what this was as I can't find it)
-1 person said "General first aid at work but that alone would not make me as confident as I am in dealing with epilepsy due to having friends with the condition". I think personal experience of the condition is obviously incredibly useful in epilepsy awareness but it does suggest that the knowledge gained from personal experience as opposed to a First Aid course is in someway different and I'd be interested to know how we might bring those two things closer together.
6) How confident do you feel in your ability to support someone if they were to have a seizure?
There were five discreet options to this answer.
1 = I would not be able to support someone
5 = I would be able to confidently support someone
1 = 17%
2 = 19.1%
3 = 21.3%
4 = 23.4%
5 = 19.1%
This was a really interesting question. Despite the fact that 42.6% of people said they had received some training for epilepsy only 19.1% of people then felt they could confidently support someone during a seizure. It's not a new comment to say that epilepsy is a varied condition that can present itself in many ways and that it's often difficult to prepare for that. It can also be traumatic to witness a seizure and therefore difficult to apply what you have been taught. The most worrying part is the 17% of people who would be not able to support someone, included in here were people with First Aid certificates and people that work in Front of House departments. I don't think it is unreasonable for a basic level of epilepsy awareness to to given to those people working in Front of House considering they are public facing roles.
7) How well do you feel the organisation you work for (or a recent organisation you have worked with if you're freelance) provides support for people with epilepsy as both employees and theatre-goers?
There were five discreet options to this answer.
1 = The organisation provides no support
5 = The organisation has a comprehensive support system
1 = 21.3%
2 = 31.9%
3 = 21.3%
4 = 17%
5 = 8.5%
This is probably the most worrying question. Over half (53.2%) of theatre organisations fall into the bottom two categories for this question which is maybe part of the explanation as to why there were so few respondents to this survey who work in theatre and have epilepsy. It was good to see though that at least some organisations (8.5%) had a comprehensive support system, I think it would be good to do further research into what these systems are.
This was not an academic study and therefore it's hard to make sweeping suggestions about the theatre industry. I do think it confirms a few things and suggests some next steps forward. There is a lack of awareness in the industry in how to support a person with epilepsy to access theatre and how to support someone during a seizure. I do know however that there is a wealth of information about supporting people during seizure out there so this feels like an easy fix. In terms of general epilepsy awareness, I think further research is needed to look at the barriers faced by people with epilepsy in theatre so we can begin exploring ways of overcoming those barriers. Once we have this information we can begin creating support systems for people who work in theatre. There also seems to be a worrying gap between the knowledge gained on First Aid courses and the knowledge needed to support someone during a seizure.
-It would be great to see theatre organisations display information about epilepsy and seizures to their staff, this information can be found at: https://www.epilepsy.org.uk/info/firstaid/what-to-do
-There is a need for research into barriers people with epilepsy face in accessing theatre.
-An adequate number of public-facing staff should be First Aid trained and there should be First Aid training present in office environments.
-There is a need for more general epilepsy awareness, this could be delivered by info sheets but I think is better delivered in person with real experiences.
I have received some incredible generous support in this project from Slunglow, Camden People's Theatre, Pleasance London, Arts Council England, Out of Joint, Epilepsy Action, Upstart Theatre and Shoreditch Town Hall, Natahsa Nixon, Tim Kelly and Chris Czornyj but I think it's only the beginning. The work I've been able to do so far only confirms to me that there are untold stories and untapped potential in people with epilepsy that have historically been excluded form theatres or from telling their stories in general.
I've created "Can You See Into a Black Hole?" which is a solo show about by experiences of growing up with epilepsy with the help of my parents, it's been an incredibly difficult process to dive back into a childhood that was sometimes very isolating and lonely because of the condition. We've performed this show now at Camden People's Theatre and The Holbeck in Leeds and will be shortly looking to develop the show further and begin programming further performances. This show has also opened my eyes to conversations with a lot of young people with epilepsy that are experiencing the same feeling os isolation that I experienced so as the project goes forward I would like to turn it from my personal experiences towards the experiences of people with epilepsy across the world.
The next artistic goal for the project I think is to explore the wealth of experiences across the UK and create a response to them so if there are any exhibition spaces that are interested in that conversation I'd really love to chat to you.
I also really want to connect generally with people with epilepsy, email me, tweet me, find me on instagram and let's grab a cup of tea. I'm always around to chat.
The last thing you'll see from this iteration of the project is the emergence of an e-zone which is a guide to surviving epilepsy for young people, you can find more info here and we are still accepting submissions.
If you have engaged with this project so far and I could ask you to take one thing away with you, it's that epilepsy is a complex and varied condition that contains both moments of joy and difficulty and there are more of us that know that than you think.
If you are struggling with the condition please reach out for help, I recommend epilepsy action and info can be found at: https://www.epilepsy.org.uk/info