Inclusive Education in Action: The Story Behind Forget Me Not ~ 1020

Tim Villegas
From MCIE. What happens when a family takes on the largest school district in the United States to advocate for inclusive education? You are about to find out.

My name is Tim Villegas from the Maryland Coalition for Inclusive Education, and you are listening to Think Inclusive, a show where with every conversation we try to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at MCIE.ORG.

For this episode, I speak with Hilda and Olivier Bernier. As 3-year-old Emilio prepares to start school, his family finds itself embroiled in a challenge all too common for children with disabilities—to secure the right to an inclusive education. Cornered in one of the most segregated education systems, New York City public schools, filmmaker Olivier and his wife Hilda turn the camera on themselves and their child with Down syndrome, as they navigate a byzantine system originally designed to silo children with disabilities.

Hilda, Olivier, and I talk about the film Forget Me Not, which is currently streaming for free on Tubi, and give us an update about how Emilio is doing now.

Before we get into today’s interview, I want to tell you about our sponsor, Together Letters. Are you losing touch with people in your life but you don’t want to be on social media all the time? Together Letters is a tool that can help. It’s a group email newsletter that asks its members for updates and combines them into a single newsletter for everyone. All you need is email. We are using Together Letters so Think Inclusive Patrons can keep in touch with each other. Groups of 10 or less are free and you can sign up at togetherletters.com.

Thank you so much for listening. And now, my interview with Hilda and Olivier Bernier.

Hilda and Olivier Bernier, welcome to the Think Inclusive podcast.

Olivier Bernier
Thanks for having us.

Hilda Bernier
Hi, Tim.

Tim Villegas
So I saw Forget Me Not a few months ago, and it was so impactful. I really wanted the listeners and readers of Think Inclusive to meet you and hear your story in your voice. I don’t know if you know this about me, but I was a former special education teacher. Hilda, I know that you are a special education teacher or former one. How prepared were you to enter into this journey with Emilio, knowing what you knew? Were you prepared at all for what you were up against?

Hilda Bernier
I did feel prepared to some extent, but the challenges came up pretty abruptly and quickly. As an education professional, I wanted to give credit to the people evaluating him and walking us through the process—the transition from early intervention to preschool. I thought people were working in good faith. From my experience as a teacher, I worked in a school that was very welcoming of children with disabilities, and I taught mostly integrated classrooms at the time, what was known as ICT—integrated, collaborative teaching. From that experience, I believed I could work with these people and trust their expertise.

So it really caught me off guard to learn he was going to be put on a trajectory that was not inclusive from the very first day in preschool. It felt like a bucket of ice water over my head. I had to shake that off and have a real discussion with Olivier to decide our priorities as a family and how we were going to get there. Yes, I was very familiar with the process as a professional, but when it came time for me to be on the other side of the table, it was a completely different experience.

Tim Villegas
Just to be clear, I want to be accurate. Were you a special education teacher, or a general education teacher?

Hilda Bernier
I have a license in special education with a bilingual extension, so I served all those populations. Most of the courses I taught were integrated, with the exception of a handful of self-contained classrooms when I taught high school. I have to say, the self-contained environment at that age is so detrimental to students. They hate it; they don’t want to be there. It’s stigmatizing and leads to truancy. Some stop showing up.

For more targeted interventions, there was a lot of convincing students that resource-type support was necessary, which made it a little better. But when we first had a cluster of children with self-contained IEPs, we went through a lot of difficulty getting students to trust us and to buy into the idea of going through high school. It was very hard. At one point we had to discuss dissolving those self-contained cohorts because it just wasn’t conducive to anything good.

Tim Villegas
Olivier, the film starts with Emilio’s birth. As I was watching, what was your plan with that footage to begin with? It surely wasn’t to make this documentary.

Olivier Bernier
Absolutely not. Before being a father, I was a filmmaker, and it’s natural for me to hold a camera. When Emilio was born, I had a camera in my hand. In the moment you see in the film, the camera was around my neck—I didn’t know I was still recording because there was a lot going on, and recording was the last thing on my mind. After the dust settled, I realized the camera had been rolling. It took me about a year to check if the footage was there, and another year to actually watch it. It was definitely not intended to be part of a documentary.

Tim Villegas
You could think of it a few different ways. It sets the scene beautifully for families. I was at the Club 21 conference in Pasadena where they showed it, and I overheard a mom say, “That’s exactly how it was for me.”

Olivier Bernier
We knew pretty early on that we had to include it because we wanted the film to be raw, authentic, and as us as possible. It was a really challenging moment. We were completely unprepared. People need to see that to understand what goes on later in the film. At that moment, it felt like doom and gloom to us. I had never met anyone with Down syndrome. I had no idea what it meant for living a full life. That moment set me on the path to making the film in the first place.

Tim Villegas
The scene we’re talking about is when the doctors explain there’s something different about Emilio, and the doctor actually says “Down syndrome,” right?

Olivier Bernier
Yes. From the moment they took Emilio to the incubator, I knew something was going on. The doctors were huddled around him. I looked at Emilio and could see the slanted eyes, and my heart was pounding—what’s going on, why aren’t they talking to us? Then the doctor comes over and says, “Your son shows five markers of Down syndrome,” and he goes through the five. You feel out of body. You’ve just gone through this experience, you’ve been up for 50 hours, and then you receive this news. It was delivered almost as if your child is dying—very grave. Looking back, there’s a better way to do that. These are the first moments of your child’s life, and you should be celebrating it no matter who your child is.

Tim Villegas
In the film, it shows you both thinking about Emilio’s education—your hopes and dreams for him—and I also picked up a sense of “I’m not sure inclusion is the right thing.” Why was advocating for inclusive education important to you for Emilio? Was there a moment when you knew it was the right thing?

Olivier Bernier
I think Hilda and I have different perspectives because she came from the professional world of special education, but we both agreed early on that we wanted our son included in society. We’d do whatever it took—swimming lessons, as many activities as possible—just to be around other children, even before school. Inclusion in life was our goal. I assumed schools were inclusive at this point because we’re in New York, a progressive city, and Hilda was teaching in integrated classes. I was completely ignorant. When we started talking about it, Hilda had reservations—and she can go through those.

Hilda Bernier
I did have reservations. As I mentioned, I want to give credit to the people doing evaluations—physical therapy, occupational therapy, speech. The doubt in me stemmed from those reports because they painted a picture of my son that didn’t match what I saw every day, working with him and his early intervention therapists. I knew he would get where he needed to be. Reading these reports, I started second-guessing my own knowledge—even though I’d read the research when becoming a teacher. Research supports that inclusion benefits students with disabilities and those without—academically and socially. There’s no question that’s what we wanted then and what we’ll keep pursuing. There’s no reason he should be hidden away. He has a visible disability, but inclusion will make everyone’s learning experience better.

Olivier Bernier
The reports she’s referring to are evaluation reports—people look at your child for an hour and determine their future trajectory. That’s what they use. Then you go into the IEP meeting—I’m sure we’ll get into that—and they try to sell you a bad car, essentially, and tell you your child isn’t good enough. If they’re coming from that professional world, part of you wants to believe them, even though your gut says otherwise. Visiting the Henderson school changed our perspective on inclusion.

Hilda Bernier
Seeing what they do at the Henderson School was phenomenal. It was life-changing to see the possibilities. There were children with real challenges—speech delays, feeding tubes—and neurotypical children hanging out with everyone else as if it were everyday life. They were all learning and playing together. Everyone in the building—all the adults—were on the same page. To make something like that work, everybody has to be on board. It would be great to implement that elsewhere: as an educator, you can teach everybody. Yes, there are general ed teachers and special ed teachers, but as a professional, you need to be prepared to serve everyone. Some kids without IEPs still need differentiated instruction.

Tim Villegas
One thing I’ve always wondered about Henderson—I’ve never been; I’ve only seen Dan Habib’s film and your film—Henderson is part of Boston Public Schools, right?

Olivier Bernier
Yes. Henderson is a public school anyone can attend, and there’s a waiting list for neurotypical children. They try to accept as many children with disabilities as possible.

Tim Villegas
Not a criticism, but if Henderson is so successful, why aren’t more schools in Boston adopting that?

Olivier Bernier
Part of Henderson’s mission is to spread the concept of inclusion and show how it works. It’s one thing to read and talk about it, but seeing it in action—like when Hilda visited—changes perspectives. It became our mission to find a school like that in New York. There are a few completely inclusive public schools in Boston—more than in New York. What’s unique about Henderson is that it’s preschool through 12th grade. It was one of the first. Bill Henderson started the school when he was losing his vision. He was a principal and they wanted to push him out. He said, “That’s not right. I’m going to start a public school for the deaf-blind.” That’s the genesis of the school. There are other completely inclusive schools in Boston.

Tim Villegas
I’ll have to get up there. I haven’t been to Boston.

Olivier Bernier
It’s really something to see.

Tim Villegas
What was the immediate barrier when you wanted an inclusive classroom and school for Emilio? What was the first thing you ran up against?

Hilda Bernier
That meeting was the first obstacle to getting him into an inclusive classroom, and it was very upsetting. When Emilio was evaluated, he was under three—about two and a half. At that meeting, they put so many roadblocks in the way of an inclusive setting. It was heartbreaking. I believed I was part of the team, that Olivier was part of the team, that we could speak to what we knew about him and our vision, and that someone would listen. In the name of data and data collection, they had already decided he didn’t belong in a general preschool setting. I thought, “If this is how it goes at age three…” That’s when I realized we needed to get an advocate, draw a line in the sand, and work for it.

Olivier Bernier
At that time, we were making a film about inclusive education, but not focused on Emilio’s journey. We were making a more cerebral film—what is inclusive education, how does it work, what is Universal Design for Learning? As we made the film, we saw Emilio being pushed down the path of segregation at two and a half. We started filming everything and muscling our way into meetings with cameras, even though they didn’t want them. It was shocking. How could they tell a two-and-a-half-year-old he doesn’t belong in a classroom because he’s never been in a classroom? Which two-and-a-half-year-olds have been in a classroom? I felt like I was in bizarro world, and we needed to capture it.

Hilda Bernier
The pitch was unbelievable: “He’s never been in a classroom. He’s not speaking. We feel a smaller environment will be better, and then he can move up.” It’s unbelievable to think a small child at that age has to work their way out of something, when he should have been playing with the other kids, learning what they were learning, and getting his services within that setting—which is what we were pushing for.

Tim Villegas
The whole film is powerful. What was really impactful to me were the IEP meetings. That’s the setting I’ve been in—both as a district representative and as an advocate for families. It’s heartbreaking. I felt that watching the IEPs, because I’ve been the district representative saying the words about the data. In my training, supervisors coached us: it always comes back to the data because the data doesn’t have emotion. That’s the training they give teachers. But how do you separate this kind of decision from emotion?

Olivier Bernier
The entire trajectory of your child is being decided in that moment. In New York, it’s very unlikely—almost impossible—to remove a child, especially with a significant disability like Emilio’s, from a segregated setting once he’s placed there. You’re seeing glimpses of your son at 18 in that moment, and you’re thinking, “Who do I want him to be?” How can it not be emotional? That’s why I tell people: you have to get an advocate, because it’s almost too emotional. The moment is too big. It’s hard to be cool-headed or negotiate.

Tim Villegas
When you made the film, did you have a particular audience in mind?

Olivier Bernier
I wanted to make the film for myself before Emilio was born—what would be understandable to me then? What bridge would get me into following a journey about IEPs, something I never thought about before? I wanted the film accessible to audiences who don’t think about disabilities daily. It’s a story about our family, representative of what millions of kids go through. We tried to strip out acronyms or explain them because it can be confusing. We also wanted the film to be a journey—experiential. When I watch it, it still feels exactly like going through it the first time. My heart still pounds during the IEP meetings.

Hilda Bernier
I have that feeling every year when we review the IEP.

Tim Villegas
Where are you now? Are you still in New York City? What’s the status?

Olivier Bernier
We crossed the river during the pandemic—we’re in New Jersey now. We went through a long process with the district, and we had a second child, so we moved for more space. We also chose a district we thought would be most open to having Emilio included. It hasn’t been without challenges, but they’ve been much more supportive than New York was. Emilio is now in kindergarten, fully included in a general education class, and he’s thriving.

Hilda Bernier
He’s getting so much out of this experience—flourishing in every way. He works so hard and has turned into a social butterfly. Parents call us to set up playdates. That’s why we want inclusion—he’s having the experiences any six-year-old should have. The school offers karate, yoga, hip hop after school, and he’s doing it all. They don’t say, “No, he can’t.” They ask, “He has a one-to-one para—should we provide one for that part of the day?” It’s wonderful to know people will support your child like that.

Olivier Bernier
What’s amazing is the children. They don’t see disabilities—they see differences. Emilio is mostly nonverbal, and they find ways to interact. These kids will take that experience with them for life.

Tim Villegas
Some families listening may be at a crossroads: Do I keep fighting for inclusion or accept a segregated classroom? Imagine I’m that parent—what would you say?

Hilda Bernier
It’s an intense, emotional decision. Families need to set their priorities first. Do what’s best for your child and your family. If a general ed class isn’t working, it’s okay to seek other options. But you need peace of mind and clarity, or things become difficult and convoluted.

Olivier Bernier
I come at it differently. Think about what you want for your child. Do you want them included in life or segregated? Inclusion should be the first option. Some parents never try it or fight for it. There’s no way to know if it will work unless you try. There’s inclusion done poorly and inclusion done well. When it’s done well, people work together to make sure the child succeeds. At the end of the day, what do you want for your child?

Tim Villegas
And for educators—principals, team leads—what do you want them to take away from the film?

Olivier Bernier
Educators have the most important job in society. You’re setting up the next generation. We can’t keep doing things the same way just because that’s how they’ve always been done. Inclusion means every child has an opportunity to achieve their full potential. How do we create classrooms and lessons so every child can achieve the best version of themselves?

Tim Villegas
What are your hopes for the film?

Olivier Bernier
The mission is to spark conversation on inclusion. For families like ours, it’s a tool for empowerment. For those unfamiliar, it’s an entry point to understanding inclusive education. We hope people share the film. We had a great festival run—won the Slamdance Grand Jury Prize, opened the Human Rights Watch Film Festival. Now we want a grassroots campaign—podcasts like yours—to spread the word. The more people see it, the more we can level the playing field for the conversation about inclusion.

Our core audience is families with someone who has a disability, but we also want to reach families who don’t. My sister, who has two neurotypical kids, learned about inclusion for the first time by watching the film. There are so many advantages for all children in inclusive settings.

Someone asked me recently, “Why isn’t there more inclusion? Is it financial or political?” In New York, it’s not financial—they spent a billion dollars in 2021 on lawsuits fighting inclusion and sending kids to private schools. It’s not politics—anyone can have a disability. It’s our duty to help people with disabilities. It makes us better, more empathetic, and gives us a different view of the world.

Tim Villegas
Hilda and Olivier Bernier, this has been a fantastic discussion. Thank you so much for being on the Think Inclusive podcast.

Hilda Bernier
Thank you for having us.

Olivier Bernier
Thanks so much for having us.

Tim Villegas
Think Inclusive is written, edited, and sound designed by Tim Villegas, and is a production of MCIE. Original music by Miles Kredich.

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