Our culture has had its fair share of struggles when it comes to treating everyone equally. We’ve seen the #metoo movement, the Black Lives Matter campaign, the gay pride movement, and we’re still working on gender equality. Dan Habib, Chris Cooper and Marianne Leone Cooper are working on a new movement, the “Opening Doors” campaign. They hope it will gain momentum this fall when their film “Intelligent Lives,” opens with a broader distribution. They hope #IntelligentLives and #OpeningDoors will raise awareness and jumpstart discussion around the segregation of persons with physical and intellectual disabilities.
Dan, the director, and executive producers Marianne and Chris, along with another executive producer, actress/producer/activist Amy Brenneman, will be on-Island next Monday, July 23, when the Martha’s Vineyard Film Festival presents “Intelligent Lives,” with support from the Island Autism Group, the Vineyard Independence Project, and Kids Included Together. They’ll show the film outdoors at the Beach Plum Inn in Chilmark at 8 pm, and will follow it up with a panel discussion about inclusion. There’s also a dinner with the guests prior to the documentary screening.
They have a direct interest in the film — and in opening doors. Habib’s son Samuel has cerebral palsy, as did the Cooper’s son, Jesse, who passed away in 2005. They’ve fought battles in schools and in communities to make sure their children had access to the same opportunities as their peers. Habib is a documentary filmmaker whose first film, “Including Samuel,” was about his son. He works at the University of New Hampshire’s Institute on Disability. Chris Cooper is an Academy Award winning actor, and Marianne is an actress and author of the book “Jesse: A Mother’s Story.” Chris narrates the film.
“Intelligent Lives” explores the history of disability in the U.S. and revisits some of the disturbing footage from Geraldo Rivera’s 1972 expose on Willowbrook State School on Staten Island, which closed in 1987. The film takes viewers through the history of IQ testing in the U.S. (Forty-nine of the 50 states still use IQ testing as a way to determine if a student will carry a lifelong label as a person with an intellectual disability, Chris tells us in the film.)
The documentary follows three young adults living meaningful and connected lives. We meet Naieer, a young autistic man with a passion for painting; Naomie, a young woman with Down syndrome who begins a new paying job at a beauty salon; and Micah, a student at Syracuse University’s InclusiveU, which brings students of all ages with intellectual and developmental disabilities to the university, where they experience college life in an inclusive setting.
In each individual’s case, the film confronts some of the challenges they face, but more importantly, it amplifies their achievements. It reminds everyone watching of the dignity and humanity of these three young adults.
The Times spoke with Habib and the Coopers last week in a conference call.
The Coopers explained that when Jesse was 6 his neurologist told them — in front of Jesse — that he would never be “intellectually normal” and that they should send him to Massachusetts Hospital School in Canton, now the Pappas Rehabilitation Hospital for Children. It’s an acute long-term care facility. Marianne’s response was a resounding “No.”
“I just knew,” Marianne said. “I was the mother that everyone rolled their eyes at. But I knew he was in there. I knew it when he burst out laughing when I played Alvin and the Chipmunks in his headphones.”
Marianne said that was when she told Chris, “Screw the Itsy Bitsy Spider, we’re giving him Yeats.”
Jesse eventually wrote poetry of his own and aced every one of his Latin exams. Using an eye-gaze computer, he could read and communicate, and he played video games with his dad and won, Marianne said.
“We’re constantly battling low expectations,” Dan said. “That’s something Marianne and Chris had to do, and we had to push with Samuel, to raise expectations for marginalized people.”
Even after they moved to Kingston, Mass., to give Jesse a better educational experience, Chris said they still faced special education administrators who didn’t want to deal with Jesse.
“We had to confront them and bring other parents in, and then once we settled in, each new year he’d have to prove himself to the new teacher,” Chris said.
Dan said many school districts claim they don’t have the funds to provide a completely inclusive education experience for students with disabilities. But he said that’s false. “It’s not about money, it’s about strong leadership in the district,” he said.
“It’s cheaper in the end,” Marianne added. “Besides, there’s the humanity part of it. We didn’t want our kid included so he could be the inspiration for everyone else, but it kind of turned out that way. Inclusion changes the way you relate to people with disabilities.”
“Intelligent Lives” provided a platform for the Coopers to tell Jesse’s story, and the impact he made on the people around him. Chris said having Jesse absolutely changed their lives.
“When you look at the business Marianne and I are in, you’re treated like kings and queens frankly, and you can assume that you’re very self-important,” Chris said. “I always thought we kept pretty level-headed, but Jesse really, really instilled in us the important things in life.”
“He was the best teacher ever,” Marianne added. “He kept us from not being in fantasy land. I learned patience, which I’m terrible at, and to look deeper.”
The young adults in “Intelligent Lives” are navigating college experiences, working with a job coach, socializing with their friends and their families. Micah left his parents’ home in Michigan to move to Syracuse to attend InclusiveU. He’s become his own best advocate.
“It all starts with advocating for inclusion,” Dan said. “It’s one thing to talk about it but it’s totally different to actually be in that classroom. You have to experience it.”
The principal of Naieer’s school, Henderson Inclusion School in Dorchester, says inclusion has helped the teachers become more individualized, personal educators.
“I really believe that what we are doing is fighting against segregation again,” she says, “segregation based on ability.”
Segregating Jesse didn’t work for the Coopers and it didn’t work for the Habibs’ son Samuel.
“Disability is a natural part of diversity that we should embrace,” Chris said. “In a nutshell, what Dan has touched on is that nothing is going to happen unless we rub elbows, and that starts in school when we’re young.”