Kelsey Peterson spins her power chair over white sand and makes funny faces at the camera. On a quest to find answers to cure paralysis, she’s been traveling cross-country, interviewing researchers and meeting with members of the SCI community for her documentary Submerged. But today Peterson is taking in the beauty of White Sands, New Mexico. Though a part of her wishes she could climb to the top of the sand dunes, she cruises around them, seeing the same sky.
Submerged, which is scheduled to finish filming this year, follows Peterson, a C6 quad, who was injured in a diving accident in 2012. As a dancer and yoga teacher, Peterson had always been creatively driven and physical. She was in the process of starting a dance company with her best friend when she was injured. While trying to adapt to life post-injury, Peterson became a board member of the nonprofit Get Up Stand Up to Cure Paralysis and won the title Miss Wheelchair Minnesota in 2014.
Learning on the Road
Through her advocacy work, Peterson became passionate about uniting and amplifying the voice for a cure, a voice that she feels has been quieted since the death of Christopher Reeve. Seeking answers from top medical researchers and connection with her community, Peterson and her longtime friend, photographer Madeline Brown, hit the road in January 2017 to film a documentary and create a map of SCI research being done across the country. “Researchers and people with spinal cord injuries should connect more and learn from each other,” says Peterson. “They should know more about me, and I should know more about them.”
Starting in their hometown of Minneapolis, Peterson and Brown traveled for four months, stopping in over 15 states, recording close to 100 interviews. “People were very receptive to being on camera,” says Peterson. “They welcomed us into their labs, homes, families and their dinner tables to share their life and hard work.”
Throughout the trip, Peterson had moments of self-doubt, wondering if she was capable of carrying out the project and if people would care what she had to say. But meeting with members of the SCI community, hearing their stories and getting their support gave her the fuel she needed to keep going.
Caleb Bartlett was one of these people. Bartlett is a C5-6 quad, over 20 years post injury, who had an experimental stem cell treatment in 2013. He and his family invited Peterson and Brown to their farm in Northwest New Jersey and chatted for hours over a feast. “At that time, I had only been injured five years and I didn’t want to be the new kid on the block, all arrogant thinking that I was going to save the day,” says Peterson.
Bartlett immediately felt a bond with Peterson and was taken by her energy, sense of humor, curiosity and hope. “With Kelsey’s documentary I don’t think it’s just about finding a cure for the injury,” he says. “It’s about finding a cure for the pain, the fear, frustrations, disappointments and heartbreak, all the different things that come along with it. Just the living day to day.”
The realities of life on the road for a quadriplegic proved challenging. “I always loved traveling, being on the road and being spontaneous, and that’s not easy anymore,” says Peterson. “I’ve become a planner, which I never was, but have also learned to be flexible, to go with the flow. Adapt or die.” They stayed at friends’ houses, Airbnb rentals and Motel 6s, and became skilled at impromptu ramp building and piggybacking to access inaccessible places. The experiences taught Peterson how to communicate more effectively with the people that are helping her.
More to Tell
As they began to edit the hundreds of hours of footage, Peterson and Brown realized that they weren’t finished filming and had more story to tell. Peterson was approached about being part of a music and dance performance called A Cripple’s Dance and was also looking into participating in a clinical trial. “We originally thought the film was going to be a lot of researchers talking, and a lot more about the effort for a cure, which it is, but it’s evolved and is told through my personal journey of finding my voice for my community and healing and growing,” she says.
As first-time filmmakers, figuring out how to tell the story has been Peterson and Brown’s biggest challenge. “I’ve learned that the more vulnerable I am, the richer the story gets,” says Peterson. “The more I am willing to just say F-it and share and be real, the more people are going to connect with me and with the film. So, it’s been scary, but it’s also been cathartic and incredibly rewarding to commit to that and then feel it working.”
Peterson wants Submerged to lead to change and has partnered with the non-profit Unite 2 Fight Paralysis to develop an advocacy movement that will be called “The Cure Map.” “The film will serve as a catalyst to this movement, something that is much bigger with longevity that can involve the community,” says Peterson. “I want people that are in my situation who don’t know how to participate to find a way and have an impact.”
Peterson keeps a video journal about the rehearsal process for A Cripple’s Dance and shares what it’s been like to find dance again. Last month, she and other performers with and without spinal cord injuries took the stage in Minneapolis for four performances. Together, through music, dance and words, they told a story about accepting life as it is while simultaneously accepting that you can desire and long for more.
Peterson plans to start editing Submerged in early 2020 and have a completed film later in the year.
To stay up to date visit submergedfilm.com, or follow on Instagram @submergedfilm and Facebook @submergeddocumentaryfilm.
** This post was originally published on http://www.newmobility.com/2019/11/submerged-finds-its-voice/