RARE Daily

Coming Sooner or Later to a Theater (or a Streaming Service) Near You

February 15, 2023

When Kris Napper learned of the death of a woman who he had known from his youth as a fellow camper, he took to Facebook. He had recently lost a few other people and he posted a bucket list for himself that included such things as skydiving, hang gliding, and something involving the model, Kate Upton.

One of the people who read the post was Lisa Werner, the woman’s former camp counselor who had been friends with Kris but had lost contact. Werner, who worked in film and TV production, told her friend Jackie Vorhauer about the post. Vorhauer had been interviewing octogenarians about their bucket lists for a possible documentary. As the two talked, they hit on an idea of making a film about Kris and his best friend Kyle, who Julia also knew from the camp.

They thought Kris and Kyle were compelling subjects because of their long-term friendship, the irreverent sense of humor that they shared, and the trajectory of their lives. Kris is a graphic designer who has launched his own business and Kyle, who performed stand-up comedy and is working on a novel, is engaged, living with his fiancé and her son, and working toward a master’s degree in sociology and accessibility studies at Central Washington University. And, of course, the fact that they both had spinal muscular atrophy, a degenerative neuromuscular disease, made their story even more compelling.

“Even though, at first glance, people see us in our wheelchairs and it’s maybe hard to see past that, the fact is that we live very full meaningful lives,” said Napper. “We have very active social lives. We have families and friends, and basically are no different than anybody else.”

Kyle said he doesn’t let his disability define who he is. He hopes the film will change stereotypes about how people with disabilities, who, he said, are often portrayed as living sad and difficult lives.

“Yeah, it’s rough but I’m still a person under all of this. I have a fiancé, and a family who loves me. I have a little kid whom I really care deeply about. I have best friends. I have sisters. I have a dog. I’m just normal.”

Werner and Vorhauer have been shooting the two in their daily lives off-and-on for ten years. But they haven’t yet decided what story they are telling about Kyle and Kris as it has become a deeper project than a movie or series about checking off a bucket list.

There is their friendship, which began at a camp sponsored by the Muscular Dystrophy Association in 1997. They’ve been close ever since. They even lived together one summer after camp. Werner describes them as an “odd couple” who balance each other out well. Today Kris is 36 and Kyle is 35. They both live in the Seattle region, a few hours apart, but remain in close contact.

Vorhauer said she is amazed by their friendship and watching them has inspired her to form better friendships.

“It shows you really need those good people in your life. Take away the disability, they need each other in their lives to talk about girls, school, and all these activities. But then when you add back in that disability and that challenge, you have to have that support network,” she said. “You can have a mom. You can have a dad. You can have friends. But you have to have someone who’s really going through it with you, so you don’t have to filter your thoughts. They don’t have to explain anything to each other. They just get each other.”

Then there are the undeniable issues of living with SMA. As much as the two want people to see them for who they are and they want to live lives like anyone else, they are constantly confronted by barriers even in a world in which the Americans with Disabilities Act is more than 20 years old.

Werner recalls one time when they hired a film crew in Seattle to shoot Kris recording a rap session at a studio (his rap name was “Dis Ability”), but he never showed up and the crew finally went home. It turned out he was stuck in the hallway of his apartment, unable to push a button or open a door. He slept the night in the hallway.

The filmmakers note that while Kyle is engaged, if he gets married, he runs the risk of losing access to funding for a caregiver, which he needs.

One of the striking aspects of a trailer on the website for the film, which is being used to raise funding to complete it, is the barriers they face. When Kyle is called to the stage to perform stand-up, there is no access, so he must perform on the floor from his wheelchair. At the entry to a hotel, two men must carry him up the 15 marble stairs at its entrance. And when he rides a boat for the first time, four people must lift him and his chair from a motorboat to the sailboat.

And then there are the airlines. Don’t get them started on airlines, which not only make it difficult for someone in a wheelchair to travel, but have lost and damaged Kris’ wheelchair during his travels.

Though the film wasn’t intended to capture ten years in the lives of Kyle and Kris, it has become a record of the progression of their conditions and the impact that new medicines have had on them.

Kris and Kyle both have SMA type 2 and have been the beneficiary of new therapies. They used the antisense therapy Spinraza, and later switched to the daily oral medication Evrysdi when it became available. When they started filming, the life expectancy for someone with SMA type 2 was about 25 years, but the advent of therapies is changing that. Both are now in their mid-30s.

When they started filming 10 years ago, there were no available treatments. From the time Kyle was 25 until he started using the medications at age 30, his disease progressed significantly.

“In those five years I lost more of my own physical independence than I had in 25 years combined—being able to feed myself, to move my arms around, to type on a keyboard, and to use a cell phone. By the time I was 30, I was unable to any for those things,” he said. “Now I’m on this new drug that I can take at home, and I have not lost any of my physical abilities measurably in three or four years.”

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