Local filmmaker works to end harmful epilepsy stigma

One in 26. That’s the number of people who will develop epilepsy during their lifetime. For many living with the condition however, the lack of public awareness and the resulting stigma can make it feel like that number is far less. 

According to Brent Boyer, Sonoma State University's director of disability services for students, “Stigma often comes about when others are unaware of particular conditions such as epilepsy. The best way of combating stigma is with education…” 

That’s just what local filmmaker Miles Levin is aiming to do with his new film, ‘Under the Lights,’ which tells the story of a high school student with epilepsy, who attends prom despite the knowledge that the lights will cause him to have a seizure. 

Levin, a Santa Rosa Junior College graduate, has epilepsy himself, and hopes his film will raise awareness by accurately depicting and humanizing the condition for the first time, as many films have historically failed to do. 

Describing these harmful representations of epilepsy, Levin said, “When you’re telling a story, and you need something wild and scary to happen to your character, the easiest thing to do is to make them have a seizure. The problem with that is that it’s been so exaggerated that when you tell someone you have epilepsy, the image that comes to mind is one that’s really, really scary.” 

The misconceptions that many people have about the condition cause those who live with it to often feel ostracized and misunderstood. “[Epilepsy] is also often conflated with other stigmas, such as drug abuse and mental instability,” Levin said. 

Without frequent or accurate depictions in TV shows or films, many are unfamiliar with the condition, or even with how to respond to a seizure. And while life-saving measures like CPR are regularly taught in schools and shown in the media, seizure first aid has received little attention. Luckily, the steps are fairly straightforward.

“You stay with someone, you turn them on their side, you don’t put anything in their mouth, and you time it. That’s all. After three minutes [if the seizure persists] you can call an ambulance,” Levin instructed. 

‘Under the Lights’ was initially released as a 10-minute short film in 2020, but the overwhelming support Levin received ever since has facilitated his ability to now work on turning the short into a full-length movie. The script placed in the top 1% of 8,200 scripts in the world’s most prestigious screenplay competition, the Academy Nicholl Fellowship. It also won Tribeca’s Fan Favorite Award at their Untold Stories Competition, and with it, a prize of $50,000.

In addition to writing and directing the film, Levin sits on the board of the Epilepsy Foundation of Northern California, which offers a wide range of resources, including in-person or virtual seizure first aid training. 

Some SSU students would like to see this sort of training offered on college campuses. Jorge Romero, a third-year electrical engineering major, stated, “I believe seizure first aid should be taught, but it should be embedded in the CPR class.” 

Although some might argue that widespread implementation of this sort of training is excessive, the data proves otherwise. “Epilepsy is more common than cerebral palsy, MS and Alzheimer's combined,” Levin said. “The only reason that we’re not treated with the same empathy that those conditions have achieved is that we’re afraid to talk about it.” 

Levin is actively seeking donations to help fund the production of the full-length version of ‘Under the Lights.’ Readers are encouraged to visit www.underthelightsfilm.com to view the short film, donate, and learn more.