Theatre in Australia is striving to be accessible, and I am pleased to see the many (very small) steps being taken. However, these steps aren’t being taken by the big commercial corporations and unfortunately, the burden is falling on small indie companies. 

I have been approached on multiple occasions as a performer and as an audience member about my epilepsy and have been asked, “How do you manage your epilepsy with all the lights on stage?” The answer to that is quite complicated, but I want to open up the conversation – not just for me, but for other performers with light sensitivity.

So let’s open this can of worms because I want to talk about accessibility needs.

Epilepsy is one of the world’s leading neurological conditions. There is no cure for it and there are over 40 different types of seizures, with multiple triggers. 30% of people who are medicated, do not respond to seizure medication. Every case is different. Every brain is different – and complicated.

It’s not a new conversation. Celebrities in the past have spoken up about it, and there are so many that have had it or have it and have still managed to have a successful career. Most of them grew out of it, like Neil Young, Prince, and Elton John. Actor Hugo Weaving (of ‘Matrix’ and ‘Lord of the Rings’) suffered one seizure every year between the ages of 13 to 40. 

Actor Philip Martin Brown said, “Fits almost forced me to quit acting, stripping me of confidence because I didn’t know when a seizure would occur and who I’d be with.” He is now back on stage and thriving. 

I have always been concerned about performing in shows with my epilepsy and even though I have never had a seizure – touch wood – due to the lights, it is always scary. Forget performing for a second – I have also had instances where I have had to wear a set of sunnies or look to the floor as an audience member watching a show because the strobes or flashing lights on stage have been very intense. I have missed out on watching shows because I have been told, “You can’t go see this show because there are way too many strobes”. 

So is that the solution? Missing out on shows because no one considered what it would do to a person suffering light sensitivity, or worse, seizures? 

I don’t believe it is. Because you can make a beautiful show with lights – you just have to be smart and considerate about it. I often hesitate declaring my epilepsy when initially auditioning because I’m well aware that it is a liability that a company will have to take on. However, it is important for me to say that I have been blessed to work with companies that have taken the time to make sure that my health has been a priority. May it be a one-woman show or a musical with 30 cast members. 

So in talking about this, I’d like to highlight the measures that were taken for me, specifically, to create a safe and accessible space for me on stage in the past. 

Do: take time to have a conversation about the person’s needs, limits and boundaries.

Don’t: question or push those boundaries, and say things like, “Well that’s just what the industry calls for” – it doesn’t. .

Do: let the performer take breaks if a light has hit them straight on or if it has disoriented them.

Don’t: assert yourself and let them know it’s causing you inconvenience.

Do: think through the lighting design and consult the performer whilst plotting those lights. Consider where the lights are pointing in this scenario.

Don’t: use strobes or lasers – they are the quickest triggers.

The brain is a very interesting organ. It fires neurons at a second’s notice with no warning. To the industry, please understand that we’re not trying to use that excuse as a cop-out. 

During production week of my one-woman cabaret “Blacklisted”, when plotting lights, Lucia Haddad, my sound designer, safely manoeuvred lights for me, so as to not get triggered, we had a stand-in for my track. I was in the audience watching and taking notes of all the lights changing and where each light was coming from. Where specificity was needed for me, or if something had to be tested, she would yell “incoming rotating lights and quick changes”, and I was on stage and all I had to do was either close my eyes, or wear my sunnies. If the light was still too strong, I’d voice my concern. That moment never came, because she had so considerately made sure of it. There was a whole song in my show where lights were changing around, but they didn’t trigger me because they were all happening behind me. Seizures aside, I have friends who are performers who suffer from light sensitivity because they’ve previously had a brain injury. 

Conditions like epilepsy are not talked about enough in our industry and conditions like that don’t come to the forefront unless there is someone advocating for it. I’m not saying I have all the answers, and I’m not saying it’s easy– it’s not. It’s quite complicated, because there are so many other moving pieces in a show. But light sensitivity is something to be aware about when producing or writing shows. It’s not how the industry ‘should’ be. 

Almitra Mavalvala is a Karachi-born writer, performer, composer and actor from Sydney. She hopes to tell stories that will stay with you for a long time. You can find her on Instagram.