There’s a fundamental problem with the way epilepsy awareness is being generated—and we need to do something about it. Soon.
I’ll be blunt: Raise your hand if you’ve ever bought a ticket to a fundraising gala or joined a walk for a condition you’d never heard of? If that’s you, you’re a unicorn—and a role model to the rest of us.
Let’s be real: if you’re at an event like this, it’s because you already care. You already have a connection to the cause, and odds are, you’re not the one at risk of contributing to any stigma.
The school bully is never coming to the walk. So how much awareness are we actually generating?
We do these events because they are fantastic for solidarity and vital for fundraising. They boost morale and remind our community that we’re not alone. These efforts are essential to the missions of underrepresented groups. But in the fight for “awareness,” nonprofits face an ongoing uphill battle.
EFNC's Walk for Epilepsy
How do we force people to care?
I’d love to hear what other communities are facing right now. As for epilepsy, we exist in a silo where the only people talking about us… are us. Year after year, we gather and speak to the same audience. Even as it grows, our efforts tend to attract more of our own.
We pour resources into chasing the general public—through educational materials, school and workplace assemblies, and other “sit and listen” approaches that change minds one group at a time. But these are expensive and require active outreach. If the boots aren’t on the ground, the minds aren’t changing. And frankly, there just aren’t enough of us.
The Solution.
We have to stop speaking as if the holy grail of awareness will some day appear and change everything. It already has.
What if underrepresented communities just copied and pasted the strategies that have changed everything for others?
Take the autism community. Just a few decades ago, this was a topic most people wouldn’t speak about openly. Today, autism is regularly represented in movies and TV (even if the quality is sometimes debated). What was once a secret now has a vibrant corner of social media. Families and individuals find support in online communities that speak with pride. Is their fight over? Of course not. But now people are being passively introduced to autism in spaces they already enjoy—like their living rooms.
There’s still more to teach, but they’ve shown us the power of storytelling and entertainment to bring identity into the mainstream.
The MEERKAT EFFECT
There’s something I call the Meerkat Effect. When one person tells their story—or shares the story of someone living with a condition—others begin to follow. All the Meerkats feel safe to come out once they see the first one didn’t get eaten by lions.
If I had a dime for every time someone told me they shared their story because of Under the Lights, I’d be rich. If you’re able, it is so important that you share yours. You don’t need to write a book or make a movie. Just say something. That’s enough.
In Short
We are never going to achieve true awareness without storytelling. Humanity has a built in cave man programming to be drawn to our shared stories. Storytelling connects us over mutual humanity when the gap of our differences is otherwise too great.
When I made the Under the Lights short film, I thought it would be a powerful way for people with epilepsy to see themselves on screen.
What I didn’t expect was for the general public to become deeply interested in epilepsy as a result. Suddenly, epilepsy was an engaging topic. It was empathetic. It wasn’t too hard to understand.
Watch the Under the Lights short film HERE!
When the short film took off, I decided to expand it into a full-length feature, which is now in post-production. It features major stars and should have no trouble reaching millions of eyes. If you loved the short, please share it. That’s the only way we create the impact we hope for.
GOOD NEWS!
The Under the Lights FULL LENGTH movie is coming, get updates by subscribing for free below, I won’t spam you, and you’ll get periodic updates when the movie is ready.
