Rockville, Maryland, May 4 – As a National Leadership Fellow, I have had the opportunity to hear from guest speakers throughout my semester with RespectAbility. One of our most recent guests, Lenny Larsen (an internationally recognized producer and director from Los Angeles), provided particular inspiration and advice for my life.
Larsen is a man of many talents. While serving as the executive producer/creative director for theme park projects throughout the world, he simultaneously was maintaining a second career as an internationally competitive springboard and platform diver with eyes focused on 2016 Olympic trials. Then the unthinkable happened. A trampolining accident resulted in a catastrophic spinal cord injury, rendering him paralyzed from the neck down and dependent on a ventilator to breathe.
For many, this type of tragedy results in simply giving up, but with Larsen’s resiliency, determination and ingenuity, he refocused to rebuild his life, his career and his body. With the help of an outstanding support team, advanced technology and creative ingenuity, in fewer than 18 months, Larsen was back. Not just back to creating entertainment, but also back on the pool deck putting his experience as a diver to work as both a coach and a judge. His work in both the entertainment industry and in diving keeps Larsen on a schedule that most able-bodied individuals would not be able to handle, traveling extensively both domestically and internationally (one of a handful of ventilator dependent individuals able to do so).
As part of Larsen’s relentless quest to live life to its fullest, he has embraced technology to help him return to doing nearly everything he was able to do before his accident. Larsen’s one-of-a-kind standing wheelchair allows him to once again navigate the world at eye level, independently driving it with the help of a pressure sensitive straw system. With the help of voice control software, Larsen is faster on a computer than most of us are who can use our hands. And, with state-of-the-art neurostimulators recently implanted on his cervical spinal cord, Larsen is working with leading research scientists in an attempt to restore some upper body functions.
A passionate advocate for accessibility and the rights of disabled individuals, Larsen spent much of his time here in Washington, D.C. speaking with members of Congress lobbying for changes to Medicare that would enable more people with mobility issues to have access to complex rehabilitation technologies like standing wheelchairs. “We humans aren’t designed to be sitting all the time, just because we can doesn’t mean we should; we need to get more people standing up again.”
“Life as a quadriplegic is not something you do alone,” says Larsen. “The technology helps a lot in maintaining an illusion of complete independence, but what it really comes down to is the team I have supporting me.” Larsen “does life” with a handpicked, specially trained team of caregivers, each of whom have the energy, passion and sense of adventure to match his own. “I don’t look at it as a job,” said Carlos Lopez, Larsen’s primary LVN.
Larsen’s advice to RespectAbility Fellows: never doubt the resilience, perseverance and determination that dwells within the human spirit. “I’m disabled, not dead,” Larsen jokes. “Those of us with disabilities need to understand that we are our best advocates and decisions about how we live our lives, what we can and cannot do, what should and shouldn’t be accessible, and how we are represented in the world at large can’t be made on our behalf. We need to stand up and get involved in creating solutions to the challenges we face, whether it be in our own personal bubbles or on a nationwide governmental level. Having experienced life at both extremes of the ‘ability spectrum,’ I’ve come to a very clear understanding that under no circumstances should healthcare policies be drafted without thorough consultation with those of us directly affected; able-bodied architects have no business determining what is acceptably accessible, filmmakers who believe they understand us enough to represent us on screen have no idea what they’re getting into, I could go on and on and on. I guess the point I’m trying to make is run for office, make a movie, become an architect: get out there and be the change you want to see.”
To me, Larsen is an amazing role model for young adults with disabilities. He has learned to adapt and evolve, never giving up or accepting limitations.
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RespectAbility is a nonprofit organization fighting stigmas and advancing opportunities for and with people with disabilities. This spring, 14 Fellows had the opportunity to learn from a variety of guest speakers. Learn more about the National Leadership Program and apply for the next cohort! Contact BenS@RespectAbility.org for more information.
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