This post is part of the Living Well with Epilepsy Blog 30 Day Relay for Epilepsy Awareness Month.
I look forward to every Epilepsy Awareness Month. Even though I have had epilepsy for more than 35 years, I can feel isolated. Epilepsy Awareness Month provides an opportunity to feel connected to a larger community that is becoming stronger each year. In this post, I want to introduce you to Miles Levin. He is an emerging filmmaker with epilepsy. I have known Miles since he was a camper at Camp Coehlo.
I haven’t decided yet if I like that our month often coincides with our national election cycles, but it highlights the importance that we control our image and push our narrative. We need our artists and filmmakers. We need our storytellers.
The last four years illustrates the importance of our voices… and before you think this is a cheap shot at President Trump, it is not, however, it does surround the heated argument regarding whether President Trump mocked a disabled reporter. While I have my own personal feelings about his comments, I was most concerned about the dialogue. The arguments seemed small, and the critique was not by us or about us.
Instead of asking whether the reporter was mocked, we could have been asking, “Where were the other disabled reporters and staff people?” “How much time or space do the various news outlets give to disabled issues?”
Instead of asking whether President Trump lied about mocking the reporter, we could have pressed all Presidential candidates to discuss their policies for the disability community? We could have demanded that there were questions during the Presidential debates. (By the way, I attended a Presidential campaign kickoff, and I didn’t hear the current Vice President-Elect mention any specific policies for our community during her hour speech… both parties ignore us.)
When reporters or medical experts discuss the corona virus, do they discuss how it affects the disability community? During the last four years when our country has became more aware of hiring discrepancies, how often are business leaders asked about their hiring practices regarding people with disabilities?
During the Academy Awards and similar shows, how many people with disabilities are nominated? How many win? How many work behind the scenes? How many make the shows that inform how we see ourselves?
This last set of questions is a good introduction to Miles Levin. I met Miles at an Epilepsy Foundation of Northern California event. With the support of the Epilepsy Foundation, he has created the short film Under The Lights. The short film stars Pearce Joza and Alyssa Jirrels. For this post, I have included photos from 2009 through a private film premiere last year.
Interview conducted online follows with closing remarks.
Bryan: What is important about camp?
Miles: The important thing to understand about this experience is that the value extends so far beyond summer camp. Most of these kids have never, in their whole lives, been away from home or even left alone for a whole day. On top of that, many of the kids have never knowingly met another person with epilepsy nor understand just how common it is. For some of them this is the only time they’ve been around kids who ‘get them’, where they don’t have to explain themselves. They just get to be kids. A few really important things come out of camp. The first is that “epilepsy camp” has almost nothing to do with epilepsy. It’s just a regular summer camp where the adults have backgrounds where they’re very well equipped to deal with epilepsy and to ensure safety for all ability levels. The kids are never sat down and asked to talk about their experiences. They’re never prompted or invited to make the week about anything other than being a kid. Through this experience, the kids talk to each other and make friendships on their own time. They discuss their epilepsy among themselves. And on the last night, without fail, when the candle gets passed around the campfire on the last night and the kids are asked to say anything they want, suddenly those deep inner truths come out. They leave having experienced for the first time what it’s like to be understood, (not just sympathized with) and a newfound comfort with who they are and what they’re capable of.
Bryan: Do you think movies are entertainment or education?
Miles: There should be both. As the epilepsy community what we need to come to understand is that we can only get so far with our PSA’s. That’s half the battle. We’ve found lots of great ways to build enthusiasm amongst the community and built great programs for safety information. The problem is that year after year we cry out against stigma to our awareness events where the audiences consist largely, or more often entirely, of people who either have epilepsy or know someone with epilepsy. Ask yourself, when was the last time you attended a rally or a awareness walk for a cause you have absolutely no connection to? The people at risk of contributing to stigma are those people who have no reason to show up to the yearly epilepsy gala. To truly fight stigma, we need to pair our educational efforts with strategies that make the general public EXCITED about being in the room with our community. Film and TV is one of the only spaces in culture where people actually go out of their way to find stories from people they haven’t seen before. We are getting TIRED of seeing the same stories made by the same people. We need to meet these people in the places where they’re already going. Other minority groups are having great success. There are Oscar Qualifying Film Festivals that show exclusively LGBTQ+ content. To get there they encouraged their community to speak up and tell their stories. They built a culture. And eventually they reached a place where not only could the public not afford to ignore them, they didn’t want to ignore them. People are generally good people. They want to be entertained. Telling our stories in ways that bring us pride and also share our humanity allows us to connect with regular people in a way they understand. Think about Alzheimers representation in film. It affects fewer people than epilepsy but you can scarcely find a movie about a character over 80 where memory loss of some kind isn’t at least implied. We empathize so frequently with such a condition that the public won’t tolerate stigma nearly to the degree it does with epilepsy. The path is proven. We need to get started.
Bryan: What do you want to see from the epilepsy community?
Miles: Stigma is, luckily, a simple beast. It’s just a lizard brain fight or flight response to something a person doesn’t understand. It’s fought not just with information but with empathy. As a community we need to build a culture that rewards confidence. I can’t ask or expect the whole community to stand up tomorrow and decide they want to share their experiences or be public with them. But for those people that are confident and able to share, we need you to. We need to normalize the image of people who have epilepsy that do not have a problem with talking about it. Slowly but surely, we will see the newly diagnosed and the long silent being willing to do the same. If your epilepsy doesn’t cripple you, talk about it. Share it. Laugh about it. Tell a story about it. It’s hard for the public to fear confident people, and we can get each other there.
Bryan: If you were not making movies about epilepsy, what type of movies would you like to make?
Miles: Naturally I drift to comedy. I love absurdism. I love Mel Brooks, Wes Anderson and Charlie Kaufman. I will eventually continue, but building a foundation for more artists with epilepsy to succeed with their work is something I want to be a part of long term.
Bryan: How does epilepsy help you as a filmmaker?
Miles: There’s a joke in screenwriting that no one wants to watch a filmmaker make a movie about making movies. The good stories come from writing the story you aren’t sure you’re comfortable telling. Telling stories that draw from deeply personal moments makes better art, has involved me much more deeply with my community and has also allowed me to bring something “new” to the table that audiences haven’t heard yet.
Bryan: How are you going to help the next generation?
Miles: I am currently developing an Under the Lights feature film, which will allow our community to get in front of a much bigger conversation on epilepsy with the general public. After that I’d love to set up a fellowship or lab that locates the next filmmaker(s) and brings the next round of poignant epilepsy stories to the table. We have to reach the next tier of awareness where we don’t have to be sought out: audiences know we are there – what the LGBT community/the autism community and so on have accomplished. It sounds like a lot, but it isn’t. We can take a massive bite out of stigma with enough stories, in a matter of years and not decades. Count on it.
SOME MORE THOUGHTS FROM BRYAN
There is a response in Miles answer about camp that I don’t want to be lost. Miles mentioned that kids at epilepsy camp are not asked to talk about their epilepsy… they are not required to discuss it. I think this is important for our community to know.
We should not be required to talk about our condition all the time, especially when we know that people are not really going to listen. It has been my experience that there is something grotesque about the way the current epilepsy community wants us to share our vulnerabilities without really protecting us.
It’s really important for people without epilepsy to start a group called “Listen About It.”
And yet, we must find a way to create our stories the way that Miles has done. I don’t want to give away the story, because it is a great film, but I want people with epilepsy to know that it is hard to share. I wrote for the epilepsy foundation for years. I don’t know if leaders without epilepsy listened. Perhaps when I argued, in 2011, that we create our own stories, the Epilepsy Foundation listened… but honestly, I don’t think they ever heard me.
Talking is not magic. Sometimes it helps, but it can also create false expectations, like medication.
I wrote about
Brad Paisley in 2014, and then visited him. It helped, but I recently heard another country superstar make a similar joke on national television. Did the comment hurt? I don’t know yet, but I am still seeing Red, Red, Red.
We will fall down and get up, and one day, we will tell our stories. When we do, I think we will tell them differently. We will not merely look for an end to epilepsy or ask for a cure. We might ask that the people of the world make our lives better today.
