■ Lilly Grossman hopes to help others with disabilities through her video
By Catherine Ivey Lee
While her fellow classmates were experiencing a rare torrential downpour last month, one La Jolla High School junior was having a rare experience of an entirely different kind several times zones away: being recognized at the White House’s inaugural Student Film Festival.
Lilly Grossman, 17, received an honorable mention for her video entry on the use of technology at school, the festival’s topic. The issue is dear to the La Jolla teen, who suffers from a mysterious illness that prevents her from walking and makes speaking difficult, and who relies on technology in many ways. More than 2,500 students from kindergarten to high school entered the competition.
At the Feb. 28 event, Lilly and other student filmmakers were treated to a private meeting with President Barack Obama, who encouraged the group to continue to embrace technology and spoke of the need to increase technology access to all American students. They also attended an Oscar-like celebration that included red carpet interviews by Neil deGrasse Tyson (host of TV’s “Cosmos”) and Bill Nye the Science Guy, and a screening of some of the films on giant screens set up in the East Room.
It was a thrilling experience for Lilly and her parents, Steve and Gay, who accompanied her on the trip. While Lilly’s film was not aired, she appeared in a montage of the winning films. And for her, the day produced its own highlight reel.
“My top three highlights were being able to ride in President Obama’s elevator that he rides every day to go to work, having the President grin at me when he came in, and seeing the other students’ videos,” Lilly recalled.
Unlike some of the filmmakers, who used technology to document school gun violence or to produce new robots, Lilly’s use of technology is not an extracurricular activity. Since her earliest months, she has suffered from an undiagnosed condition marked by weak muscles and poor balance that affects her ability to move easily, including to walk. She has difficulty writing. For much of her life, shehas been awakened by powerful seizure-like tremors, up to 30 a night. The fits sap her limited energy and leave her exhausted.
Lilly’s physical disabilities make life — and school — a challenge. Yet, with the right technology, she has been able to communicate more effectively and to demonstrate her cognitive abilities, which are unaffected by her illness. It has also enabled her to attend her local high school and to experience school in the same way as other students.
In the two-and-a-half-minute video she filmed with help from friends, Lilly offers a simple look at her tech lifelines. She is seen with her laptop on which she takes notes, corresponds with teachers and uses specialized software to do math.
The film shows how technology literally moves her: Lilly travels to school in her family’s wheelchair-accessible van and navigates around campus in a motorized chair. In one scene, Lilly uses FaceTime, live video communication that enables her to connect with the classroom on days she’s too ill to attend in person. In another, Lilly keeps up with friends through texting and social media sites.