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CUB event promotes epilepsy awareness in the music industry

By Julia Duggan
Senior Staff Writer

The College Union Board (CUB) hosted the founder of a nonprofit group that promotes awareness and safety for people that have epilepsy on Mar. 17 at 8:30 p.m. The nonprofit group focuses specifically on the music industry since a lot of the live shows can involve lights or sets that could trigger a reaction.

Ellie Hart, the founder of L.E.A.D. DIY (Lighting and Epilepsy Awareness Development in DIY) answered questions prepared by representatives from CUB. 

DIY in music stands for Do-It-Yourself, and this concept refers to bands that design their own show instead of having the record label design it. This term originates from the punk-rock era of the 1970s, with the idea that musicians should do everything to reject consumerism.

As Hart explained during the Instagram live event, she started the foundation as a way to make viewing experiences more inclusive. She became inspired to start the nonprofit when she wanted to see the movie “Incredibles 2” in a movie theater. Her friends went first to watch it and reported that there were potential triggers in the movie that could provoke Hart’s epilepsy, so they advised Hart not to go.

“Figuring I couldn’t do much about trying to get Disney to regulate their movies, I figured I could at least do something in DIY,” Hart said.

Hart works in the music industry, and during the event gave examples of times she was working behind the scenes and had to speak with the lighting crew, for fear of having a seizure due to the lights.

“If I paid (a lighting crew member) to do your job well it will be cool to some people, but also you should be mindful of what you are doing because it is going to hurt some people,” Hart said.  “For the most part, people have been very receptive to it.”

L.E.A.D. DIY offers free signs and posters to place around shows, as well as bringing awareness to the dangers that can exist for people that have epilepsy. On the website, there are posters for the three different levels designed by Hart.

(Photo courtesy of College Union Board)

Green means that there is no danger at all for people who have epilepsy. Yellow indicates caution, meaning that, depending on the severity of epilepsy, some people could be affected by the show. Red stands for danger, and that people who have epilepsy will most likely be affected. 

There are also signs about identifying someone who is having a seizure, and what to do if someone is having one. The idea is to make the music industry more aware of audience members that have epilepsy, and prevent them from going to a concert and having to sit in the lobby the entire time due to a risk of having a seizure.

“Epilepsy is different for everyone,” according to the L.E.A.D. DIY website. “People with epilepsy each have different ‘triggers’ (things that cause a seizure), and some have no triggers at all.”

According to the website, there are no industry standards in regards to evaluating shows for people who have epilepsy. L.E.A.D. DIY hopes to create an industry standard in bringing awareness to evaluating how safe shows are for people who have epilepsy and for labeling the shows ahead of time to avoid people spending money on a concert and then having to sit in the lobby.

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