At just 17 years old, Jesse Billauer was left paralyzed after a surfing accident broke his neck and severed his spinal cord. Despite his doctors’ prediction that he would never surf again, Billauer took back to the waves and immersed himself in the Life Rolls On non-profit foundation, using adaptive equipment to return to the sport that he loves, and helping other surfers with disabilities do the same. Today, he is taking a leading role in activism for those with spinal cord injuries, and his documentary Jesse’s Story is riding a wave of film festivals throughout the country.
ABILITY Magazine’s Chet Cooper and Liz Angeles caught up with Billauer to discuss his film, his foundation, and his future.
Chet Cooper: I got a press release this morning about the merger between your organization and the Christopher Reeve —
Jesse Billauer: Yeah, it’s good stuff! Exciting.
Cooper: How did that come together? Did you go to them? Did they come to you?
Billauer: We’ve been working with those guys for many, many years. We donate a lot of the money from our events to the Christopher Reeve Foundation. They’ve admired all the work that we do with youth. We’re really big on the West Coast and they’re really big on the East Coast, so we just put our heads together, thought about how we could be a lot stronger and a lot better together, and we found we had a nice fit.
Cooper: Did you meet with Christopher Reeve?
Billauer: Yeah, I met him a few times. I have a documentary movie of my life, called Jesse’s Story, and Christopher Reeve is featured in there. We did an interview with the two of us together.
Liz Angeles: Jesse, I know you did the Malibu Film Festival, and you’re going to do another festival in San Diego, is that right?
Billauer: The San Diego festival is tonight, actually.
Angeles: That’s tonight? So you have to fly back from New Jersey today?
Billauer: No, I won’t be there, but my whole family will attend it. I have to give some speeches over here at some high schools, and then we’ve got a Life Rolls On golf tournament in Cape May tomorrow, and then a surfing program over here on Sunday. So I came out here while the movie’s playing in San Diego.
Cooper: And your foundation has a gala in Hollywood. Is that your largest fundraiser of the year?
Billauer: Well, that’s our annual big event, yeah. It’s called “Night by the Ocean.”
Angeles: Why is it called “Night by the Ocean” if it’s in Hollywood?
Billauer: You get to be by the beach! We bring the beach to Hollywood.
Cooper: Speaking of which, when you take these people with disabilities out surfing, the boards are modified?
Billauer: Yeah, they’re modified. I lie on my stomach and prop myself up on my elbows. There are also these foot straps that we use for tow-in surfing, and straps that are mounted by the rails so you can just wedge yourself in. If you have the ability to grip, you can hold onto them. But mostly we’re just lying on the board.
Angeles: In your documentary, when you go to Fiji and you have the jetski towing you, it’s mentioned that you’re not able to surf as you normally do because the waves are so big in Fiji. Why did you need that?
Billauer: Out there, the waves comes in at a faster speed. If you get into the surf a lot earlier, they’re a lot faster, so if someone’s just pushing you, you might not have enough speed to really be where you need to be on waves. So we kind of came up with this adaptive jetski idea, in which I would be towed behind it. It was cool.
Cooper: I’ve seen some of that, but I was wondering how you are able to catch a wave and not purl, because body position is typically so important.
Billauer: If you feel like you’re going to purl, then you just scoot back on the board a little bit.
Cooper: Are you able to position your body when you’re on the board?
Billauer: Oh, yeah. I can turn. I turn by leaning my shoulders.
Cooper: Are you capable of getting off the board if you want to bail out?
Billauer: Yup. And I’ve got a life jacket that’s custom-built, Velcro-ed® to my wetsuit. If I fall, I pop right up. I can hold my breath. I can swim. But yeah, I’ve fallen inside the barrel of an eight-foot wave in Fiji, and I just popped right up.
Cooper: So in a sense, what you have is maybe even safer, because a lot of people hit the coral, and you’re probably going to be avoiding that issue with the buoyancy that your suit provides.
Billauer: Yeah, in a way. But I get pounded, too.
Cooper: That can’t be good.
Billauer: (laughs) For sure. I get pushed under the water, but I just pop back up.
Cooper: Have you ever thought you should be wearing a helmet? In those situations when you’re in that low, shallow break?
Billauer: I wear a helmet all the time, surfing. I almost got killed in Malibu by a longboarder. A guy’s board almost hit me in my head, and ever since then, I wear a helmet. I used to not wear a helmet or a life jacket, years ago.
Cooper: So we all get to mature a little bit as we get older.
Angeles: So Jesse’s Story won two awards at the Malibu Film Festival, right?
Billauer: Yeah, it won both Jury Selection and Audience Selection for the Best Documentary. We worked on that film for about six or seven years, and have been editing it for the last three, so it feels good to have it out there.
Angeles: We met with Scott Caan for our previous issue, who works with an organization called Surfer’s Healing. And we asked him what the difference was between Surfer’s Healing and what your organization is doing, and he said that theirs is more for kids who are autistic and yours is more for people—
Billauer: Yeah, theirs is more for people with autism and ours is more the spinal cord injury set. And the majority of our participants have never surfed.
Cooper: Can you briefly describe, for people who aren’t aware, what you actually do when you have a surfing event?
Billauer: Well, we have about 200 volunteers and maybe 40 different surfers with disabilities at a given event, and everyone is divided into four teams. So for each surfer, there are maybe 10 or 12 volunteers per person, and everyone gets an opportunity to surf. It’s very safe. If someone is a surfer who’s more wellversed with the ocean and who wants to venture farther out where there are bigger waves, it’s all about his or her comfort level. You can be close in and catch little waves, or you can go out and catch bigger waves. It’s really up to you. We choose locations that we know aren’t going to be too dangerous.
Angeles: What would you say is the most fun thing that you’re up to these days?
Billauer: Fishing and surfing, mostly. Diving with sharks was beautiful. I’d love to do that again. But right now I’m pretty interested in international efforts.
By the way, does every celebrity on the cover of ABILITY Magazine have some sort of connection to a disability?
Cooper: If they don’t, then we take a bat to one of their limbs. [laughter] Actually, the celebrities either have a disability or a strong connection to a health condition or disability. The celebrities choose to speak with us, to help bring awareness, educate and change attitudes.
Billauer: That’s really cool.
Angeles: So, now that you’re merging with the Christopher Reeve Foundation organization, I guess that makes you The Man now, right?
Billauer: Yeah, right. (laughs) But there’s also The Buoniconti Fund and The Miami Project. Mark Buoniconti has a lot of celebrity friends in sports, and they raise millions and millions of dollars every year. I’m just little old Jesse, man. No pressure.
But I do a lot of motivational speaking now. That’s what I do around the country, and that’s how I make a living. I don’t make a living from Life Rolls On, I make a living from my motivational speaking career. I speak to companies, schools, various organizations. There’s information about that at jessebillauer.com.
Cooper: How many speaking gigs do you typically do a year?
Billauer: I used to do 50 or 60, but I don’t anymore. I’d like to be doing about 120 a year.
Cooper: Did you ever think you’d be involved in anything like this? Had you thought of disability at all prior to your accident?
Billauer: Never. So, in a way, I don’t blame people for not doing anything to help people with disabilities. Most people just aren’t thinking of it. I tell people, “I didn’t know anything. Don’t blame yourself for not knowing anything. Just have an open mind and learn.” It’s not their fault. There’s no handbook that they’re supposed to read. It’s all life experiences, man. I’m just trying to teach people before they have to go through any of those tough experiences.
Cooper: You feel like you’re making an impact in that way?
Billauer: Yeah, I do. I’ve had kids come up to me and tell me that they were thinking about committing suicide until they heard me speak, because their lives were that bad. But after talking to me and seeing me, they realized things weren’t that bad after all. A girl came up to me who was a high school senior and she saw my speech and said something clicked. She said, “I was just about to walk out of school and quit school today. I’m going to stay in school now. I’ll graduate, just because of hearing what you had to say.”
Cooper: You’re lucky you made the plane on time!
Billauer: (laughs) Right! So it’s all good, you know? If I reach one, I’ve done my job. When you’re talking to little kids, and they’re asking questions, they sometimes tell you a story about themselves. It’s really cute.
Cooper: Can you remember one?
Billauer: Usually a kid will just be like, “Hey, I broke my leg,” and instead of asking me a question about something, he’ll just say, “I broke my leg,” or “I broke my arm. It was a mess.” Some kids come up to me and say, “What happened to your legs? Did you break them? Are they gonna heal?” There are so many different questions that I get. But it’s cool. Everyone has his own thoughts, and kids don’t hold back. They’re not worried. That’s the way to be.
For more information on surfing with Jesse Billauer, visit: liferollson.org