Chris Cooper and wife Marianne Leone open up about fighting for their late son Jesse, who had cerebral palsy and epilepsy, to attend public school in the new documentary Intelligent Lives

By Kara Warner
October 25, 2019 08:21 PM

Actor Chris Cooper and his wife Marianne Leone know first-hand the profound, positive impact inclusive education and training can have on the lives of the differently abled and their loved ones.

The Oscar winner and actress/author became champions for kids with special needs, after fighting for their son Jesse, who had cerebral palsy and epilepsy, to attend public school.

Thanks to their efforts, Jesse attended public high school in Massachusetts where he was an honor student. Jesse died suddenly from a seizure at age 17 in 2005, but the Coopers continue their advocacy for the differently abled, knowing the positive impact Jesse’s public school education had on their family and Jesse’s classmates and teachers.

Cooper and Leone’s work with the special needs communities in Massachusetts led them to meet filmmaker Dan Habib (Including Samuel) and eventually to their involvement in Habib’s new documentary Intelligent Lives.

The film, now streaming on worldchannel.org as part of the current season of the series America ReFramed, follows three young adults living with intellectual disability and striving to overcome stereotypes and misconceptions as they navigate high school, college and the workforce. Cooper narrates the film, which includes parts of his and Leone’s own story and memories of their life with Jesse, and both he and Leone are executive producers.

“Dan worked really hard on this and these kids, we call them kids, some of them are adults, but they were wonderful,” says Cooper. “We’ve met every one of them. In every case too, it’s these families who just never give up. I think people need to realize that, that you just got to get in there with both feet.”

“When Dan was doing his film about testing and how it affects people with disabilities, he thought of book-ending the film with Jesse’s story,” explains Leone. “Jesse had quadriplegia and was non-verbal, so if he needed to be tested, he needed to be tested on a computer. When he was finally tested on a computer he scored in the 99th percentile. He was brighter than Chris and I.”

Jesse Cooper with his parents Marianne Leone and Chris Cooper
Michael Carroll

Cooper and Leone encourage anyone with friends or loved ones who have special needs or different abilities to fight for proper inclusion, no matter what, because if they had given in to what doctors originally told them, their son Jesse would have gone to a hospital school where he wouldn’t have received proper education, if any.

“He would not have been challenged and that’s what we wanted most for Jesse,” says Cooper. “His abilities and his intelligence were intact. To avoid putting him in a collaborative situation where there’s nothing demanded or challenged, he’s not challenged, it would’ve been so sad.”

Leone says the hardest part is getting the laws that are already in place, like access to free and public education for all children, to be enforced, and they want all parents to know how to get what they want for their children.

“This is why we feel very strongly about this because we understood that we had resources. We spoke English, we both have college degrees,” she says. “What we learned is that grassroots organizing works, community works, and presuming competence is the strongest thing you can do around a person with a disability.“

Chris Cooper
Noam Galai/WireImage

RELATED: Nike Signs First Professional Athlete with Cerebral Palsy

“I find that the parent-to-parent networks are always the strongest, of course. They’re in the trenches. They get it,” adds Leone. “We made a plan. We use the local media. We went to every single school board meeting and we had a parent elected to the school board, because there was no representation on the school board of a parent of a child with a disability and that was important.”

Cooper and Leone continue to raise awareness for and advocate for inclusion for everyone, because it made an unforgettable impact on Jesse and everyone around him.

“The end result was that this made a difference in kids’ lives that Jesse went to school with,” recalls Leone. “For us the socialization was as important as anything else, it was about meeting other kids. And that worked, that happened. His best friend is now getting his PhD in language.”

She adds: “I think that there are more kids now, like these young millennials who have grown up going to school with kids like Jesse and that’s a good thing, because that means they understand differing abilities, they understand differently abled people.”

RELATED VIDEO: Little Boy with Cerebral Palsy Channels Up Character for His First-Ever Halloween Costume

Cooper and Leone naturally think of their son daily, especially when it involves their advocacy and helping other parents fight for inclusion.

“We always say he was our greatest teacher,” says Leone. “He taught us a lot. He taught us what was important and he taught us never to lose sight of what was important.”

Intelligent Lives is available for streaming on worldchannel.org, PBS.org and on PBS apps for iOS, Android, Roku, Apple TV, Amazon Fire TV and Chromecast.

Advertisement