SPEAKING TRUTH TO POWER: Everyday Kids Lend Their Voices to Affect Policy and Raise Awareness About Epilepsy

by Lisa Boylan, editor, EpilepsyUSA

Directly on the heels of the inspiring and historic second annual National Walk for Epilepsy, the Epilepsy Foundation welcomed parents, children, doctors, volunteers and staff from all over the country to its signature advocacy events, the Public Policy Institute (PPI) and Kids Speak Up! (KSU) program. PPI provides adult participants with a foundation for grassroots development, skill building and connecting with elected officials—all tactics and strategies that can be built upon to increase advocacy back in their home states. Kids Speak Up!, also a grassroots advocacy initiative, brings kids from all over the country to Washington to speak to their representatives about living with epilepsy. This year, nearly 70 kids representing 40 states participated.

FINDING A VOICE

While the adults at the conference were schooled in the finer points of advocating for more federal research funding and the importance of restoring the landmark Americans with Disabilities Act (ADA) to its original intent, Kids Speak Up! Participants worked in groups to craft their own messages to bring to Capitol Hill about how epilepsy affects their lives.

By telling their stories to legislators, kids put a face and a name on an often overlooked and misunderstood disorder. Their messages resonate with lawmakers, who stop in their harried tracks to listen to the genuine words of young kids who face seemingly insurmountable obstacles every day of their lives.

‘BE REAL ABOUT WHAT YOU GO THROUGH’

Former congressman and Epilepsy Foundation immediate past board chair, Tony Coelho, primary author of the ADA, spoke to the adults at PPI, championing a critical piece of legislation, the Americans with Disabilities Restoration Act. Recent Supreme Court decisions have eroded the ADA, veering it away from its original goal—to protect everyone in the U.S. with disabilities. The Americans with Disabilities Restoration Act is designed to return the ADA to what Congress intended it to be. He explained the irony of being excluded from the protections of the legislation he crafted and fought—in a bipartisan effort—to pass into law. Coelho, who has epilepsy and has participated in PPI every year since its inception more than ten years ago, told the audience that it was important for them to be honest when they went to the Hill to tell their stories. He encouraged them to “be real about what you go through.” He said, “The most important part—and I know it’s difficult for a lot of you—is to open up your hearts and let people know what you personally go through.”

‘WHEN WE WORK TOGETHER, WE CAN ACHIEVE BIG THINGS’

Epilepsy Foundation advocate, Laurie Kelly, of Lynchburg, Va., gave an emotional and riveting account of how her family’s life was upended by her daughter Shannon’s diagnosis with epilepsy. She called her family’s introduction to epilepsy “terrifying and life changing.”

Laurie said she watched, heartbroken, as her daughter faced more and more setbacks, but when Shannon was discriminated against by a horseback riding camp that would not allow her to participate, despite assurances from her neurologist, Laurie knew it was time to mobilize. She said, “Someone was hurting my cub and that’s what sparked my interest in advocacy.”

She went to her local Epilepsy Foundation and got help and also got involved, which, she said, helped her let go of her anger and strengthened her determination to make a difference. When she found out that her congressman, Rep. Bob Goodlatte (R-Va.), had not signed on to the Americans with Disabilities Restoration Act in the House, she resolved to help. Through a grassroots network of moms in her community, she managed to put together a petition with 288 signatures to take to Goodlatte’s office. She said, “When we work together, we can achieve big things.”

‘WHATEVER I CAN DO TO HELP, I WILL.’

While the adults learned how to become better advocates in D.C. and back home, Kids Speak Up! Participants played games and prepared to meet their legislators the following day. Joe LaMountain, director of grassroots advocacy and organizer of Kids Speak Up!, said, “We’re not trying to turn them into mini lobbyists; we’re trying to help them understand why they’re here and what their role is in government.”

As his son, Nicklaus, worked on his statement at a table with other young boys, Ken Schleismann, a foundry worker from LaCrosse, Wis., looked on. He said as someone who works payday-to-payday, he is committed to supporting the Americans with Disabilities Restoration Act. He explained that Congress needs to be reminded about “what America stands for and not to leave anyone behind.” Ellen Serwik, an Epilepsy Foundation board member from Delaware and mother of KSU participant Peter, 7, said the Americans with Disabilities Restoration Act is important to her as well. “Peter is going to move out of the house one day and I need to know the laws are out there to protect him when he’s on his own. I can only do it until he’s an adult, and then the world’s got to help us do it.”

Like many parents at the event Leslie Gottsch, of Boise, Idaho, got motivated to advocate for her son when he was discriminated against. Sam, 9, was scheduled for a surprise field trip with his class. His teacher’s only instructions were for the kids to wear sneakers on Friday because they were going to do something fun. Sam looked forward to the event all week and when Friday finally came, he said, “Mom, I gotta wear my comfortable shoes today!” That afternoon, Leslie got a call from the school secretary to let her know Sam was in the nurse’s office. Sam’s teacher had taken his entire class out for ice cream but left him behind because she was afraid he might have a seizure. Leslie said, “I was furious.” Then she wondered if she was overreacting. But when she started telling people at the conference about the incident, she said they were just as appalled as she was.

Sam is at a new school now, but Leslie says she plans to send a letter to his old school, copying everyone she can think of, to let them know treating a child like that is “unacceptable.” She added, “I’m his greatest advocate. Whatever I can do to help, I will.”

GETTING THE MESSAGE OUT.

Epilepsy Foundation Youth Council members volunteered for the event, leading sessions with the kids and helping with activities and Hill visits. Elizabeth Goldberg, chair of the Council, said she is committed to Kids Speak Up! because “the opportunity to participate at such a high level of government provides an opportunity to think about epilepsy and how it affects your life in a way you might not already have.” She added, “The opportunity for the kids to feel empowered will extend beyond this experience.”

After a full day of activities, games and making new friends, the kids got to tour the monuments of D.C. at night. Then it was time to rest in preparation for their important day on Capitol Hill. On Tuesday morning, Rep. Ed Perlmutter (D-Colo.), whose oldest daughter Alexis has epilepsy, spoke at breakfast before the Hill visits. He assured participants that legislators would want to hear their stories. He then introduced Alexis, who spoke movingly about the challenges she has faced, but mostly about how she has been able to achieve what she wants in life, despite the challenges of epilepsy.

After breakfast and encouragement from the congressman and his daughter, the kids and their families fanned out across the Hill to the various Senate and House office buildings to bring the message of life with epilepsy to the powerful. Congressional staffers and lawmakers greeted the families warmly and the kids appeared poised and ready to tell their stories. Kelsey Dollar, 13, said she wanted to tell her senators how hard life has been for her. She’s had nine surgeries and—by her careful calculation— 734 seizures. Her father, Don, sat beside her as they waited to meet their senator. He said, “I lost my father to a seizure in an accident and I lost a sister who died in her sleep from a seizure. Now I have a daughter who’s been battling the disorder for 12 years. I want to share that story because most people have fathers and sisters, but I don’t have that anymore.”

KSU families stood out with their distinctive bright green KSU bags amid the official white marble buildings and cherry blossoms. They walked purposefully from appointment to appointment so their kids could speak up about what it’s like to live with epilepsy and why Congress needs to pay attention.

The newly minted advocates’ voices will continue to resonate long after their big day on the Hill. Epilepsy Foundation President and CEO, Eric Hargis, reminded participants that PPI and KSU are not one-day events. He said, “Take this training and these skills back to your states and local communities and build your advocacy work on behalf of the millions of people and their families nationwide who are affected by epilepsy.”