Ellie Hart and Hannah Feldman have been working on L.E.A.D (Lighting & Epilepsy Awareness Development) DIY for the past several months, handing out signs and tabling at local shows to spread awareness about lighting sensitivity at concerts and events. We sat down with the duo to talk about how it came to be and what we can do to help create a safe space for lighting sensitivity at shows.
What sparked LEAD DIY?
Ellie: I have epilepsy, I went to shows a lot and was running MELTT Magazine at that point, and you’re obviously going to a lot of shows if you’re a music writer. And a lot of times there would be lights, and I wasn’t too worried about it because I, myself am not particularly sensitive to lights. I am technically, but I had never had an issue with it at a show. It’s always in the back of my mind, but then in June The Incredibles 2 came out and a bunch of people sent me message and said “don’t go see this movie, the strobe lighting is insane” and I thought ‘well this isn’t fair, I wanna see the Incredibles 2, a movie I’ve been waiting for for 14 years’. I got really pissed about it and I thought “if Disney’s PR team, which is probably like a thousand people, can’t get their shit together and have warnings, this is an issue and someone needs to do something about this’. Obviously I couldn’t start with Disney, so I thought about a scene where I had more influence and a community where I was active, and I started brainstorming and came up with this and the rest is history.
Hannah: When Ellie and I first met, it was because of MELT in February and we always just talked about whatever music stuff we were working on together, giving each other advice. She told me that she wanted to start an epilepsy focused section of MELT and we brainstormed names together. I was involved from the beginning and I would just help bounce ideas off of. Over the summer, I was booking a ton more shows and the issue started feeling closer to home because I would put out LEAD DIY materials at every show. That’s when LEAD started feeling like a non-profit that I helped run in some ways rather than just supported. It will always be Ellie’s brain child, but I started to feel connected to it. It wasn’t until the fall where we were talking one day and I needed an official title to receive credentials to work a show with LEAD together. I don’t have an official title, but we work together on most things. I’m so grateful that I get to work with someone as talented and creative as Ellie. She’s done a great thing here to help people with lighting sensitivity feel safe at a show.
Since you started it, how has support been within the community?
Ellie: It’s been great!
Hannah: Surprisingly actually, I didn’t think anyone would care even though both of us did.
Ellie: Yea, I didn’t think anyone would care either. Support has been amazing, we’ve really kinda picked it up in the past 2-3 months I think. We’ve been tabling our own shows and putting signs up there, Hannah’s been tabling at a lot of Reverie shows, which is important, but the real kicker to me personally was that we got to table the sold out Mom Jeans show, in Asbury Park, NJ. We were giving out materials and talking to people all night as well as distributing signs to the bands and that was super cool; we got to meet a ton of people.
Hannah: That was a turning point.
Ellie: Yea, it was honestly a big turning point. In the past month or so, I got to go on a weekender with a couple of bands that I really love and Hannah is leaving today to go out on tour and support The Ones You Forgot and Skyward Story.
Hannah: I booked that tour so it wasn’t too difficult to get LEAD DIY involved, as Jenna from The Ones You Forgot had already been supporting us for a couple of months.
Ellie: Now we’re working on incorporating as a 501C3 and we launched this new website and we have a beautiful logo that our friend made. It’s cool, especially getting to go out on the road; Hannah’s going out next week, I’m going out next week with The Sonder Bombs, Future Teens, and Barely Civil for a few runs and then we’re tabling the prince daddy and the hyena show and I’m just super excited to be doing all that shit. We’re doing 15 shows in 19 days between Hannah and I.
Hannah: There’s some overlap between the shows.
What are your dream artists to work with?
Ellie: Honestly, we’re already doing it. At the beginning of December I went out with Save Face, Future Teens, and A Will Away. I was so excited to just go to a date of that tour when it was announced that it’s not real to me that I got to go with them to table all of these shows doing what I’m most passionate about in the world. I can’t believe it, it’s not computed in my head, the fact that I got to go out with Save Face. Them and Future Teens are my favorite bands of all time, there is no topping that. I’ve peaked, might as well end now.
Hannah: I love all of those bands too, so it’s very exciting that they support us! In the hopefully near future, I’d like to get some larger scale artists involved with LEAD DIY like All Time Low, State Champs, The Maine and The Wrecks.
Ellie: The Front Bottoms, I would love to work with them. They do a mini one day festival in Asbury. I was gonna go this year but i couldn’t make it, but I’m glad that I didn’t go, because I heard from six or seven different people that the strobe lighting for Manchester Orchestra’s set was insane and not even diagnosed light-sensitive people had to leave the room. I think in music, it’s our responsibility to bring attention to something that’s failed at. As much as I wanted to be angry, I more so wanted to be able to have people be educated for the future.
Hannah: Ellie and I went to one of the New York shows of the same tour and Ellie couldn’t even be in the room for Manchester Orchestra’s set because of all the strobe lights.
Ellie: I’m so glad that I asked the Front Of House ahead of time because I would not have been able to be in that room.
Hannah: But not a lot of people have the confidence or know who to ask about the lights; Ellie just happens to run a non-profit based around it, so she knows. Another goal of LEAD DIY is to start asking venues in advance so people don’t have to worry about having a seizure or any sort of negative reaction to lights.
Ellie: With LEAD, epilepsy’s in the name because it’s an issue that is *literally* close to my heart, but we do try to expand to other people who are light sensitive. Our friend has autism and she’s very affected by light/light sensitivity so we do our best to not specifically refer to epilepsy in our signage.
What else do you want to do to raise awareness other than putting signs up at shows? How else do you think that people could help with the issue?
Ellie: In terms of awareness, we have signs and information that we give out about epilepsy; it’s just about making it something that people can talk about at shows. There is a stigma around epilepsy and our community is very accepting of it, so of course we’re going to do everything that we can to accommodate everyone. However, in society epilepsy is something that a lot of people don’t want to talk about because they’re afraid of it or afraid of what would happen if someone were to have a seizure. I think we need to break down that wall especially at events because people will push it away and not think about how it’s affecting other people’s concert experiences, which is unfair. We also want to start pushing the idea to artists that it’s not the showgoers responsibility to make sure that they’re safe at a show, it’s also on the artist and crew to be able to accomodate.
Hannah: And that’s with any sort of safety, obviously LEAD focuses on lighting sensitivity, but we’d also hopefully like to become a resource for other disabilities as well. We want to provide resources to showgoers who are feeling unsafe.
Ellie: There are other organizations that focus on these things too, there’s Art of Survival, which is bystander intervention and as a resource for people with disabilities there’s an organization called Half Access and they work for accomodations in terms of limited mobility and that organization is really cool because if you have a venue near you, you can submit a form on their website that will contribute to accessibility information.
Hannah: I’ve found that most people are super accommodating. In preparation for this upcoming The Ones You Forgot/ Skyward Story tour, my contacts were a little surprised at first when I asked about lighting because they never thought about it before. You just have to ask; most people don’t realize it’s an issue!
Ellie: It’s something that’s always on the forefront of my mind, not only for safety but also because this is my career. I can’t get frustrated at someone who doesn’t know otherwise.
Do you hope that by spreading awareness on your upcoming tours that you’ll expand LEAD DIY to more states?
Ellie: In terms of that, we actually have people requesting signs from around 20 different states. I just got a request from Illinois today and they are definitely spreading out across the country. There’s a magazine in the U.K. called The Platypus Zine, and they send out all the signs and our information with every copy of the zine that’s mailed out, so it’s technically international.
Hannah: We have about half of the states so we’re getting there. Pretty good for only seven months!
Thanks so much for sitting down with me! Is there anything else you’d like to add?
Hannah: We have t-shirts for sale!
Ellie: Yea! On our website, leaddiy.org we have shirts for sale. They were designed by an amazing artist, Ilana Hope. They’re gold and blue and they have a gameboy illustration on them.
Hannah: It says this shirt is Epilepsy safe.
Ellie: We have plenty to distribute if anyone would like one.
Ellie: Catch us on any of the tour stops, we should have them at your stop.
Hannah: We have free stickers!
Ellie: Yea, free stickers at the shows!
Ellie: Also, if you want to do merch designs for LEAD, you can contact us online!
Ellie: We’re gonna be starting a street team soon and a newsletter so reach out if you want to get involved.
Hannah: Yes, no matter what your skill is, we appreciate that you care and if you wanna get involved, we’d love to have you!!
Ellie: We have a couple of cool announcements coming up soon, so that’ll be fun.
Hannah: We’re planning something ambitious for the one year anniversary of LEAD DIY. We wanna celebrate all of the success already. Just the fact that people have latched on and care.
Make sure to check out L.E.A.D DIY on Twitter and Facebook and catch Ellie and Hannah on tour this month!
