In several ways, Katie Cook is unique. She was born with a rare defect called agenesis of the corpus callosum, or ACC, where the band of white matter connecting the two parts of the brain is either partially or completely absent.
Reports vary on the prevalence of the disorder, though diagnoses have increased within the past 20 years or so thanks to advances in medical image technology. The highest estimates now say it affects seven in 1,000 individuals, or 0.7% of the population worldwide, according to the National Organization for Rare Disorders.
Genetic testing revealed Katie is the only documented case of ACC in history with a certain genetic makeup, said Mary Cook, Katie’s mother. Until Katie was 15 years old, she and her family had never met someone else with ACC. Now, the Rogers family attends annual conferences, and exposure on a national level has shown many of those with the ailment do not have the ability to walk or talk.
“Katie is one of the lucky few,” she said, adding that physicians “don’t know how” her brain “rewired itself.”
Still, Katie faces many challenges in day-to-day life. She struggles with motor skills, hand-eye coordination and processing information quickly. Mary said physicians explained Katie’s mental limitations like this: “You and I are on high-speed Internet, and she’s using dial-up. It takes her longer to absorb and process information, and she takes it in smaller portions.”
Because of this, Katie — an aspiring playwright — was placed on an extended track for completing her degree at NorthWest Arkansas Community College, where she is a junior studying theater. Later this month, Katie has the unique opportunity to serve as personal assistant and adviser to veteran movie-maker and Inclusion Films founder, Joey Travolta, when he brings his youth camp to Northwest Arkansas and speaks at the Bentonville Film Festival.
Travolta, older brother of Academy Award-winning actor John Travolta, offers short film camps for teens and young adults with high-functioning developmental disabilities, including autism and Asperger’s Syndrome, according to the Inclusion Films website. The camp will be April 24-28 at NWACC.
Jointly sponsored by Arkansas Rehabilitation Services and Arkansas Transition Services, the local event will give 50 high school juniors and seniors from across the state the chance to and learn the ins and outs of filmmaking.
Joey Travolta’s cinematic career spans decades, dating back to 1979 when he starred in the movie “Sunnyside.” Since then, he has directed and produced more than 20 films, according to a press release from Arkansas Rehabilitation Services. A former special education teacher in his home state of New Jersey, Travolta in 2005 produced a documentary directed by a 15-year-old boy with autism titled “Normal People Scare Me: A Film about Autism” — and that work resulted in the founding of Inclusion Films in 2007.
The NWACC event is a shortened version of two-week summer camps that Inclusion Films has been offering in California the past 10 years. Travolta has brought the program to a handful of states, said Bonnie Boaz, coordinator at Arkansas Transition Services.
Katie Cook participated in the two-week camp in California last summer, and that connection between Travolta and Arkansas helped pave the way for the upcoming visit. For someone who has endured skepticism over whether she is useful in the workplace and capable of keeping a job, Katie appreciated the trust involved with helping to produce a film at the camp.
“I liked the aspect of being included,” Katie said.
It was refreshing for Katie to not be faulted for her limitations and instead appreciated for her assets – including her diligent organizational skills, Mary said.In fact, the camp inspired her to pursue a career in the arts, switching her major from special education. The camp opened Katie’s eyes to the idea that she could positively influence those with disabilities through filmmaking, even acting as a role model in front of the camera.
At the same time, the program is not just for students interested in film, Mary said. The Inclusion Films camp encourages those with disabilities to be more independent, or less “sheltered,” as Katie called it. The camp emphasizes soft skills, transferable to any career, Mary said. More than anything, it instills a sense of pride and promotes the idea within the individual that, “Oh, I’m worth something,” Mary added. “It teaches camaraderie and comfort with themselves, that they don’t have to be anxious about who they are.”
THE WORLD OF WORK
Travolta’s daughter, Rachel Travolta, is director of partnership and business development at Inclusion Films. She said the camps are not just for filmmakers.
“Our mission is to teach students vocational and independent living skills through filmmaking,” she said, adding that the organization’s programs, which now include workshops for adults, have served more than 2,500 people.
One in five working-age Americans, ages 18 to 64, report having a disability, according to the 2015 Census estimates. About 80% of Americans ages 16 and over who have disabilities do not participate in the workforce, according to March 2017 data from the U.S. Department of Labor. For people ages 16 and up without disabilities, that number is about 30%. For those participating in the labor force, the unemployment rate for people with disabilities is 11%.
Arkansas Transition Services, affiliated with the Arkansas Department of Education Special Education Unit, works with educators to help students with disabilities transition from school to adult life. Arkansas Rehabilitation Services, a division of the Arkansas Department of Career Education, is tasked with preparing Arkansans with disabilities for employment.
The two organizations often work with each other, and their efforts were spurred along with the passage of the 2014 Workforce Innovation and Opportunity Act. For Arkansas Rehabilitation Services, WIOA has been a catalyst for creating more programs involving youth, which means more collaboration with Arkansas Transition Services.
“The new law mandates us to start working with these individuals at a very young age to provide free employment transition services, basically getting individuals ready for the world of work, before they leave high school,” said Maryanne Caldwell, statewide transition manager for Arkansas Rehabilitation Services. “Based on that, we felt Joey’s film camp really fits what we were trying to accomplish with our students.”
Caldwell said a good portion of the students she works with have a goal of joining the film industry.
“We also have a lot of talented students without a place to funnel that talent and get exposure to that world,” she said.
For those not interested in movie-making, the program teaches how to work in groups, how to stay on task and how to become a valuable employee, Caldwell said. It also promotes independence, because the students are responsible for all aspects of the filmmaking process, from scripting, acting and shooting to costume and set design.
“Individuals with disabilities are greatly underrepresented in the working world, so we feel like this opportunity will help build the kids’ confidence and their skills,” Caldwell said. “People with disabilities are great employees, and we just want everybody in the community to know that we are working very hard to get our students ready to go to work.”
CAPABLE AND RELIABLE
Research from the National Technical Assistance Center on Transition shows a correlation between paid work during high school and success afterward. Boaz said Arkansas Transition Services programs, including the upcoming film camp, teach students what it means to go to work.
“We’re training them to be skilled workers who are reliable. That can only help businesses and communities,” she said. “There’s a certain perspective held by people who don’t have experience with people with disabilities. They think [those with disabilities] aren’t capable. They definitely are, and they are more reliable than many individuals out there without disabilities.”
Arkansas Rehabilitation Services and Arkansas Transition services are paying for most of the cost to bring the camp to the region. Students will pay $75 for registration, although several of them have received assistance from their school district or within their community to pay that fee and for transportation and a hotel if needed, Boaz said.
The week following the camp, Travolta will participate in BFF by appearing on a panel discussion called Lights! Camera! Inclusion! at 11 a.m. May 3 at the Record in downtown Bentonville. Travolta’s Inclusion Films team, which includes six interns — all of whom have disabilities — will document the festival on film, as it’s been hired to do the wrap-up video by the organization.
BFF is a film festival that focuses on diversity in the medium. Founded by actress Geena Davis and ARC Entertainment executive Trevor Drinkwater, BFF is in its third year.
NWACC Professor Ashley Edwards has worked in programming and guest services with BFF since the beginning. As a playwright and theater professor, she serves as a role model for Katie Cook and was also part of organizing the Inclusion Films camp in Arkansas.
Now, Katie is interested in possibly pursuing a career in film. One option is for her to, after she earns her degree, attend Travolta’s two-year workshop for adults in California. However, if Katie does make that decision she will likely return to Northwest Arkansas afterward.
“This is my home,” she said.
Mary Cook will not hold Katie back from pursuing her dreams, she said. “We want her to go as far as she can.”
Mary said the camp falls in line with a number of experiences the family has had within the Northwest Arkansas community and at NWACC that have opened her eyes to the potential for Katie’s future, a future that might have looked bleak if she listened to what physicians were telling her 20 years ago about Katie’s potential limitations.
“As a parent, it’s a relief,” Mary said. “Katie can be her own, successful person someday.”
Looking specifically at the Inclusion Films vocational workshop for adults, Mary said, “A very high percentage are able to find jobs in the film industry. They’re able to have a happy life, not performing a menial job. Katie can have a job that goes along with her passions.
“She could be happy,” Mary said. “As a parent there’s nothing more that you want for your kids than for them to be happy, successful and responsible citizens.”