DURHAM -- Shortly after her son was born, doctors told Polly Medlicott that Chris was not only a nonverbal, spastic quadriplegic with visual impairments, he also had a mental disability.
The family focused on raising him in a loving household, never feeling sorry for themselves. Still, he grew up isolated from such developmental essentials as friendship, social interaction and human touch because of his traditional schooling.
But his intelligence was seriously underestimated, even by his family.
It wasn't until 20 years later, thanks to Chris' participation in a local theater group, that Medlicott realized she had not truly understood Chris' potential.
By then it was just months before pneumonia would suddenly take her son's life, a life she spent two decades nurturing against the challenges of cerebral palsy.
Medlicott's heartbreaking realization and her son's surprising transformation are the focus of a new documentary, "A New Kind of Listening," by Durham filmmaker Kenny Dalsheimer.
Medlicott and Dalsheimer, who went on the festival circuit with his documentary about the Georges Rousse public art project in Durham in 2006, wanted to make a film that encouraged people to see the capabilities of the disabled rather than focus on their limitations.
Dalsheimer started filming the Community Inclusive Theater Group shortly after its inception in January 2005 and followed the company through its first year of weekly rehearsals into its first performance.
In 2006, Chris died just days before a second performance was scheduled - a show that was never filmed. But the documentary captures Chris' transformation from a peripheral player to a powerful contributor to the production.
The film, poignant and sensitive without being overly sentimental, is sprinkled with home movie footage, most of it filmed by Chris' older sister, Toby Mueller-Medlicott.
Now 27, Mueller-Medlicott lives outside Philadelphia and works with the disabled. She admits that she did not fully understand her brother while he was living, either.
"We never really got a full picture of who Chris was," she said. She recalls feeling there was more to him than most perhaps saw, but she still saw him as someone who was limited and needed help more than she saw a young man.
Medlicott hopes their story might prevent other families from wasting precious time with disabled loved ones, her revelation made public, perhaps a kind of penance for the regrettable way she saw Chris for much of his life.
Even as his main advocate, she underestimated him.
"The reason I'm letting it all out is because I want to speak to other parents," Medlicott said one recent morning over eggs and coffee.
She can talk about Chris with a smile on her face, her bright, almost childlike voice a contradiction, considering all she's been through.
"No one ever tried to measure his receptive intelligence, what he understood," she said. People assumed his physical limitations transferred to his mental capacity in equal or greater proportions. "It's a social and cultural bias that is still very, very strong."
A basic human right
The Community Inclusive Theater Group was established in early 2005 by Richard Reho of Durham, who has a background in disability training and theater. This group welcomed disabled and able-bodied participants, artists and those just looking for a new way of connecting with others.
One member featured in the documentary is Megan Jones, 32, a poet from Chapel Hill who has developmental disabilities and social anxiety. Early in the film, Jones talks about inclusion as a basic human right - a poignant and provocative moment.
"I'd been teased so much as a kid that I basically expected people to at times be nice," but she doubted their sincerity, she said. "I gained a lot of self-confidence, a lot of friendships. I mean, I love every single member of that group."
The group has not worked on another project since Chris' death, but members insist they are very much a family unit still. They get together for birthdays and other celebrations.
Reho had done a similar project while living in New Hampshire years before, but this was the first time he had created an inclusive theater group without a script to follow. The project was funded primarily by a private donor who wishes to remain anonymous.
At rehearsals, Reho encouraged the group with workshops that involved saying aloud something they regretted not telling someone, or coming as close to touching another member without actually doing so, their hands suspended a fraction of an inch from contact.
The resulting show was a conglomeration of poetry, movement and music that was less about a plot and more about an understanding - a series of fluidly connected vignettes.
Early in the project, Reho decided Chris should be co-director. Even though he was nonverbal, used a wheelchair and appeared, at least outwardly, unable to maintain focus, there was something about Chris' presence that spoke to Reho and others. His gestures, his eyes, and the sounds he was capable of making spoke volumes.
At first, Medlicott suspected Reho was pandering to Chris because of his disability. She found the theater group more a burden than a gift, at first - it was not easy getting him to rehearsals, in and out of the car, navigating his wheelchair. (She and her husband divorced when Chris was young but remain close. Chris lived with his mother most his life.)
But as the weeks passed, she began to appreciate that the rest of the group felt Chris had something to say, to teach them. After a life spent silently observing his world, he was quite intuitive, she realized.
Much of Chris' participation relied heavily on the use of facilitated communication. In Chris' case, a specialist, Margaret Heath, came to rehearsals and helped him use a keyboard to type his thoughts. She worked with him for five years before his death.
This form of communication is the subject of debate, because there is often no measurable way to verify how much the facilitator affects the results. But Heath insists that with Chris, whatever was typed was truly his own.
"There was no way, if he didn't want to do it, that you could force it," she said, based on the physiological contortions the cerebral palsy made permanent in his hands and arms. There was something muscular about the way Chris communicated, Reho recalled, his language carved as if from stone.
"When Chris wrote, 'Will try truth,' what a powerful thing to say," he said.
'I tried to tell you'
Medlicott recalls something Chris typed before he died - something along the lines of, "I tried to tell you. I did lose trust."
"All of that was really hard," she said. "But I had to try to use it."
After Chris died, she had to decide what to do herself. She had spent the last two decades taking care of Chris all day, every day. Her identity centered on being his caregiver. She spent a year, she said, trying to cook for friends, still be of service.
Around the first anniversary of Chris' death, the group met with Dalsheimer. It seemed right that the film project make some sense out of Chris' life, death and what the theater group had accomplished. The Southern Documentary Fund agreed to be a sponsor, and production work began.
Medlicott was also ready for a change. She eventually sold her home in north Durham, invested in a teardrop camper, and moved outside Asheville, where her parents live.
Her plan is to promote the documentary and spread the message of inclusion. She and Dalsheimer attended the International Short Film Festival in Munich this fall, where Dalsheimer said the film was well-received.
Through lectures, film showings and advocacy projects, she hopes to change the way the disabled are perceived. Medlicott wants people to think about all the ways people communicate, and about how authentic traditional forms of communication are.
"Even when I see it now, it's therapeutic for me," Medlicott says of the film. "I have the opportunity to pass this on, what he had to teach me and others. Hopefully, many other people can benefit from what he had to struggle with in his life."
Her daughter, Toby, has seen the transformation her mother has undergone, which includes taking more time for herself.
"It's really forcing her to grow," she said of the project - her mother was never a lover of camping, but here she is cruising around with the teardrop hitched to her car.
Chris' memory and the lessons he left behind have reverberated with those who love him, thanks to the film.
"We don't see his disability as something horrible that happened to us," Toby said. "It's just the way it was. In some instances, it's a gift."
