On May 3, 2016 in a New York City delivery room, moments before Hilda Bernier held her son, Emilio, for the first time, her husband, Olivier, stood by with his camera — not realizing it was still rolling.
And while it did, it captured footage that took him a year to watch.
In it, the doctor says to the couple, “Hey guys, congratulations.”
“Thank you,” Mr. Bernier replies.
“You have a beautiful baby boy, nice and vigorous breathing by himself,” the doctor continues, before adding, “A couple things we noticed.”
He points out the infant’s slightly up-slanted eyes, widened toes and the crease on his palms — subtle findings that pointed toward Down syndrome.
“Oh, no,” Ms. Bernier laments, off screen, from her hospital bed.
“I’m sorry to say this, but I think it’s important we tell you right away, even if we’re not sure,” the doctor says, “just so you guys … you guys know.”
In an instant, the couple’s lives changed in ways they couldn’t begin to fathom — in ways only even seen by other parents of children with disabilities. But through his film, “Forget Me Not” — which opened the Human Rights Watch Film Festival on Wednesday, May 19, and follows the stories of families like his own, including the Killorans of Remsenburg — Mr. Bernier seeks to remedy that.
“When my son was born, I was completely unprepared for him. I didn’t know what Down syndrome was, it was a very scary moment,” he explained. “I’m embarrassed to say, but I thought that Down syndrome meant that Emilio would never have the opportunity to live a full life.”
Mr. Bernier quickly realized the reason he felt this way. In all of his schooling, he had never met anyone with Down syndrome, let alone any type of intellectual disability, due to the United States education system that often segregates children with disabilities from their typically functioning peers.
“I thought, ‘This is a really big disservice that was done to me,’” he said. “I went to a really large school and there’s no reason to believe that there weren’t kids with intellectual disabilities in my school — but where were they?”
For Christian Killoran, this doesn’t come as a surprise. In 2015, his battle began with the Westhampton Beach School District to allow his son, Aiden, who has Down syndrome, to attend — which would have made him the first alternatively assessed student in its history — instead of busing him to another district.
Six years later, Aiden is now 18 years old, and the fight hasn’t stopped.
“We have eight federal court actions. It’s just immense,” explained Mr. Killoran, who is an attorney. “It’s just been a voluminous and overwhelming undertaking, but it’s one that we’ve been fighting. I’m in the privilege to do it because of my profession and I feel that it’s a calling to do it.
“There’s not a day that goes by that we’re not talking about it, and that’s been for six years,” he continued. “It’s hard to imagine this battle not being a part of our lives.”
While Aiden’s story begins long before Emilio was even born, it is a familiar one for many families across the country — one that Mr. Bernier suddenly found himself living while pushing for his own son to be placed in an “integrated” setting, as opposed to a “special class,” which is the most restrictive environment with no access to non-disabled peers.
“It’s a systemic issue, so it’s not like Christian or myself can just go to one person and be like, ‘This is a problem, we need to fix this, let’s sit down and figure it out,’” Mr. Bernier said. “What happens is that there’s a lot of people, a lot of barriers that are in the way of children being included.”
The film explores a far-reaching narrative of disabled individuals being hidden away from society — “the ‘out of sight, out of mind’ attitude,” Mr. Killoran said. New York State was one of the worst offenders, with notorious institutions like Willowbrook State School, where children with developmental disabilities where kept in brutal conditions.
Outcry led to its closure in 1987, but the lingering prejudice and stigma still remain within the public education system, according to Sara Jo Soldovieri, a student advocate with the National Down Syndrome Society.
“There are these antiquated, really deep-rooted beliefs that are born out of the institutional era that these people need to be separate from us because they are different,” she explains in the film. “I try to put my mindset in the doctors and nurses who worked there and I think they generally were trying to help these people, but were misguided. And I think that’s where we’re at today.”
For students with special needs, early inclusion in the classroom setting almost guarantees inclusion later on, Ms. Soldovieri said, while segregation almost guarantees just that for the rest of the student’s life. It took the Berniers some time to warm to that idea themselves.
“If people are skeptical of the idea of inclusion, I completely understand,” Mr. Bernier said. “I can relate to it because until I really researched it and looked at inclusion working well, I would have been skeptical of it, too. But what you find out is you get a better outcome for both students with disabilities and typically developing children.”
On the surface, smaller, special classes with a higher student-to-teacher ratio seems like a logical choice, according to Mr. Killoran. But there is not one study that supports placing them there, he said.
“Meanwhile, there’s literally decades of research that proves that when you integrate a child, not only is it beneficial to the child, but it’s beneficial to the ‘typical’ kids in the classroom, as well — and better for society, because the child progresses better,” he said.
To explore what Emilio’s future could look like, Mr. Bernier followed two other children with Down syndrome — one who lives in New York and is fighting a similar fight, and another who lives in Boston and attends an integrated school — as well as a student who attends the College of New Jersey.
And, of course, Aiden.
“When I met Aiden, I just thought he was such a cool guy. And I have to say, at that point, I hadn’t met many people of Aiden’s age with Down syndrome, but we hit it off pretty quickly,” Mr. Bernier said. “I just thought to myself, ‘How could they possibly want to bus this kid an hour each way, every day, to another school system? Why can’t he go to school with his brother and his sister?’
“Just that aspect of it immediately shocked me,” he continued. “I just couldn’t find any single reason that Aiden wouldn’t be successful in his local school.”
As the wheels of justice turn slowly, Mr. Killoran explained that, ultimately, progress starts on the ground level — with parents of typical children requesting integrated settings, too — and by raising awareness of the issue though initiatives like “Forget Me Not,” which will have its global release in late September.
“I’m hoping that it’s a springboard for awareness and then action,” he said of the film. “Change has to come from awareness and people saying, ‘This is just not acceptable.’ And that involves people becoming involved and saying to the school boards, ‘This is not how we want it.’”
Until then, Mr. Killoran continues his battle for both Aiden and the children who are behind him, like Emilio, who are still cornered by the system.
“Kids that age, they don’t see disability,” Mr. Bernier said. “That’s something that we teach them. Sometimes it’s hard to wrap your head around that, but it’s almost like, adults, we’re the problem.”
The Berniers learned that time and time again through their journey with Emilio, as seen in the film. Just as the 3-year-old is ready to start school, his parents receive devastating evaluation results that would place him a special class. The news sears through Ms. Bernier, who has celebrated each and every one of her son’s victories, only to be told they aren’t good enough.
Mr. Bernier wraps her into his arms — a gutting, intimate moment as they ride each emotional wave together.
“He’s gonna be great,” Mr. Bernier whispers to his wife. “He’s gonna surprise us all.”
And Emilio, who is now 5 years old, has certainly done just that, his father confirmed.
“It took a lot of convincing and cajoling from some very close friends and the producers to push me toward showing some of our most vulnerable moments,” he said. “From the time he was born, I knew I wanted to use my filmmaking abilities to try to make the world a little bit of a better place — and to create a little more opportunity for people like Emilio.”
As published in the Southampton Press