New documentary offers candid take on a young woman’s activist life in a wheelchair

Film about Cody Unser is candid take on paralysis

SANTA FE, N.M. — A gripping scene in a new documentary captures the spirit of Cody Unser, who has been paralyzed since age 12.

She’s in a bathtub in her college dorm, trying to shift from her shower chair to her wheelchair. She falls repeatedly, each time missing the wheelchair then hoisting herself up for another try.

“Happens every day. Just let it roll,” filmmaker Chris Schueler remembers her saying matter-of-factly when he offered to intervene.

The scene is shot discreetly, from a distance. Where the 22-year-old Unser bares all is in her forthright, on-camera discussions about her life.

She talks frankly about her sexuality, about challenging society’s misperception of women in wheelchairs as asexual, incompetent, dependent.

“I just really wanted to share my life, and be honest and truthful,” she said in an interview.

“Cody: The First Step” was produced by Emmy-winning Christopher Productions with help from the Christopher and Dana Reeve Foundation.

Narrated by Glenn Close, the hourlong documentary has been shown on public television in Albuquerque and is being made available to Public Broadcasting Service stations across the country. It also had the requisite weeklong run in theaters in New York and Los Angeles to make it eligible for Oscar consideration.

Unser, the daughter of two-time Indianapolis 500 winner Al Unser Jr. and granddaughter of four-time Indy winner Al Unser, was stricken while playing basketball at school in 1999.

Paralyzed within 20 minutes, she eventually was diagnosed with transverse myelitis, an uncommon neurological disorder that attacks the spinal cord.

“It was very fast. They had no idea what was wrong,” said Unser, who is paralyzed from the chest down but has use of her arms.

She has worked for years to bring attention to the disease, starting the Cody Unser First Step Foundation with her mother, Shelley, and lobbying state legislatures and Congress for stem cell research.

It isn’t enough to talk about living with paralysis, she decided: showing politicians and the public what it’s like every day is the way to go.

“I knew that the film could probably make a huge difference,” she said.

Schueler was introduced to Unser by a mutual friend.

“I knew that this was going to be an incredible television project because of who Cody is, and how she can talk about anything in a way that makes people comfortable and engaged and not be put off by what she’s talking about,” he said.

Unser told him: “I want people to be able to see and understand absolutely everything that I go through.”

Adam Kaplin, a neuropsychiatrist at The Johns Hopkins Hospital and an adviser to Unser’s foundation, said when patients get a disabling disease like transverse myelitis, often the first thing they wrestle with is: “Why me?”

“What the documentary does is demonstrate that the question gets replaced with … What can I do with my life now?” he said in an interview.

The film interweaves family video of Unser as a little girl — doing cartwheels, dancing, cheerleading — with scenes of her working out at a gym, lobbying at the state Capitol, meeting with doctors at Johns Hopkins and scuba diving, a program her foundation offers.

It also follows Unser around the campus of the University of Redlands in California, where she graduated in May.

“I grew up with cameras kind of everywhere when my dad was racing,” she said, so she was comfortable with it.

Some of the film’s most poignant moments occur as Unser talks into a camera that was affixed to her dorm room wall so she could turn it on when she felt like it.

“It became my best friend, it became my diary, it became sort of my counselor, if you will, for the entire semester that I had it,” she recalled.

In one scene, she tearfully confides to the camera, “I had this dream last night that I was walking.”

Unser believes she will walk again, and that the key is stem cell research. The major she created for herself in college was biopolitics, examining the relationship between politics and biological and medical research.

Her interest in that was piqued by watching stem cell debates in Congress and concluding that politicians needed more education on the scientific issues.

“It’s very particular to my mission, my foundation … bridging the gap between politicians and scientists,” she said.

Unser, who grew up in Albuquerque and lives with her boyfriend in Houston, plans to return to school next spring to pursue a master’s in public health. She may then go to law school.

As a senior project at Redlands, she taught a semester-long course on disability to freshmen and sophomores.

“It really sort of opened their minds and eyes to a world that I think a lot of people don’t understand,” she said. “You don’t really care about it unless you’re affected by it.”