Epilepsy Sufferers Refuse to be Excluded in Dance Culture
Alan Green and Chelsea Leyland's stories highlight the need for awareness.
On September 19, 2015, the world lost a dance music legend. Alan Green—the man behind masterfully crafted, groundbreaking, and instantaneously viral stage productions, including David Guetta's historical show atop the Great Wall of China in 2013, passed away. Although his work is renowned, his personal life has been largely kept private—particularly his struggle with nocturnal epilepsy.
"It wasn't a thing he had his entire life, it came later," says Green's wife Lainie. "That's a big shock." Alan was in his late twenties and well into a successful career managing King Tut's Wah Wah Hut in Glasgow, Scotland, when he experienced his first seizure. At the time, there was less public awareness of the condition than today. Yet, his support system was strong and his friends were eager to help him manage the unfamiliar condition. "A lot of people would have been scared and run away," says Green, who runs DJ PR company The Aurelia Group. "[His employers could have] said, 'I just can't have you here for insurance reasons.' But everyone rallied together and helped him figure out what the cause was."
Despite dance music's creed of inclusivity, dark nightclubs filled with flashing lights and loud music may seem ill-suited for someone living with epilepsy. "I don't think you should take opportunity away from people because of a condition," Green says. She notes that while many of his problems with epilepsy were heightened by the lack of sleep and off-hours work routine, Alan was still the best man for his job. "Some people get diagnosed and then they tiptoe around," she adds. "There was no fear in Alan. He made rockstar level productions, which are really rare." His extensive mastery of live shows was the catalyst for a longtime partnership and friendship with David Guetta. Together, they worked on some of Alan's most acclaimed projects, such as their 2014 New Year's Eve show in Rio de Janeiro, which was attended by over two million people.
Photo courtesy of Chelsea Leyland's Facebook.
In New York City, Chelsea Leyland is facing a similar struggle to balance juvenile myoclonic epilepsy with her career as a DJ and model. Leyland is particularly susceptible to flashing lights, and the red carpet is one of the most dangerous places for her.
"It's a frequency thing," she explains. "I'll be like, please don't use more than one flash." Unlike the realm of dance music, the fashion industry is not only ignorant, but stubborn towards Leyland's condition. "A lot of the time photographers laugh at me. They'll actually call me 'One Flash Leyland.' They think I'm being a drama queen." Her attempt at protecting herself from a seizure has even caused photographers to exclude her from photo ops altogether. "I've definitely experienced situations where people rather just tell me to keep moving than take my picture," she adds.
But, her passion for the arts keeps her motivated. "I've never met people with my condition that would ever be a DJ and travel around the world," she says. "And I'm doing it." Leyland is empowered by her role as a public figure and uses her status to spread knowledge on a condition that not only affects her, but also her sister. "My sister has a much more severe case than I do," she explains. "All her teeth are fake. She'll fall to the ground without warning. She has not been able to lead a normal life. I realized that if I spoke up, I could actually help people."
Both Green and Leyland emphasize that there are many ways in which people with epilepsy can take part in dance music culture. "There are circumstances and situations that are conducive to every kind of person in this business," says Green, who is starting a charitable foundation called The Greenhouse in honour of her late husband. The amount of daytime events practically match the number of club nights, and less obtrusive lights can be used in the place of strobes. Prior to Alan's death, he was working with Muir Maxwell Trust, a UK epilepsy charity that provides free alarms to families.
Despite these preventative measures, both women underscore the struggle that epilepsy sufferers face in the arena of dance music, but that shouldn't stop anyone from doing what they love. "If there are other people in the industry with this condition, I hope that they share their stories," Green says. "I hope that they're thriving."
Lainie Green is on Twitter
Rebecca is on Twitter.