Hilda and Olivier Bernier | Forget Me Not Documentary

Think Inclusive: Season 10, Episode 20

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 they give us an update about how Emilio is doing now.

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Cover Art Image Description: black background; think inclusive logo in the top left; rainbow-colored waves overlayed with a cropped image of the Forget Me Not poster; text reads: Hilda & Olivier Bernier, Forget Me Not Documentary; MCIE logo in the bottom right

Credits

Think Inclusive is written, edited, and sound designed by Tim Villegas and is produced by MCIE.

Original music by Miles Kredich.

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Audio Transcript

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? TogetherLetters 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. And I really wanted the listeners and readers of think inclusive to, to meet y'all. And to hear your story in your voice. And 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 out prepared were you to enter into this world in journey with Emilio, knowing what you knew, Were you prepared at all for what you were up against.

Hilda Bernier

So I I did fare felt prepared to some extent. But the challenges came up pretty, pretty abruptly. And pretty quickly. As educational professional, I wanted to give credit to all the people that were evaluating him, and that were walking us through the process and that transition from early intervention to preschool thought that people were working in good faith, and that, from my experience, as a teacher, I used to work in a school that was very welcoming of children with disabilities. And I taught mostly integrated classrooms at the time, what's what was known, then as ICT, integrated, collaborative teaching, from that experience, thinking that I could work with these people believing that I could trust their expertise. So you really caught me off guard to know that that he was going to be put in a trajectory that was not exactly inclusive from the very first day in preschool. So that was kind of like a bucket of ice water over my head. And I had to shake that off and have a real discussion with alleviate, to see what our priorities as a family were and how we were going to get to that. So yes, I was very familiar with the process as a professional, but when it came time to meet, for me to be on the other side of the table, it was a complete different experience,

Tim Villegas

just to be clear, am I not? I want to I want to be accurate. So were you a special education teacher, or were you a general education teacher,

Hilda Bernier

I have a license on special education with a bilingual extension. So I was catering to all those populations. And most of my most of the courses I taught were integrated, right, with the exception of a handful of self contained classrooms that I taught that where I was teaching high school at the time, I have to say that the self contained environment at that age, it's, it's so detrimental to the students, they hate it, they don't want to be there. It's very stigmatizing it leads to truancy, they, some of them just stopped showing up. And for some more targeted interventions, there was a lot of convincing students that that these targeted intervention serve like a resource type of intervention was necessary. So in those instances, it was a little better. But when we had, for the first time a cluster of children that has self contained IEP s, we really had to, we went through a lot of difficulties getting the students to trust us to, to buy into the idea of going through high school. And it was very hard for them. Yeah, at which point, you know, at some point, we had to like have a discussion whether we wanted to, like dissolve those class, those self contained cohorts, because it was just not conducive conducive to any to anything good. Really.

Tim Villegas

Olivier, the film starts out with Emilio's birth. And so I was, as I was watching, what was your plan with that footage? And to begin with, because it surely wasn't to make this documentary?

Olivier Bernier

Absolutely not. No, I mean, you know, before being a father, I was a filmmaker. And it's just like a natural extension of my body to be holding a camera. And when Emilio was born, of course, I had a camera in my hand, the actual moment that you see in the film, though, the camera was around my neck, I didn't know I was recording anymore, because there was a lot going on. And the last thing on my mind was recording it. It was only after all the dust settled from that scene that I realized the camera had still been rolling, and took me about a year to just check if the footage was there, and then another year to actually watch it. So it was definitely not intended to be part of a documentary.

Tim Villegas

Yeah, and you could think of it a few different ways. It sets the scene beautifully. For for families, I was just at the club 21 conference in Pasadena where they showed it. And I overheard mom say, That's exactly how it was for me. Exactly.

Olivier Bernier

We I knew pretty early on that we had to include it in the film because we wanted to make the film as raw and authentic and as us as possible. And that was a really challenging moment for us because we were completely unprepared. But I think people need to see that. It's people need to share that experience in order to understand what goes on later in the film. I believe. At that moment, it was really felt like doom and gloom to us because I had never met anyone with Down syndrome, I had no idea what Down Syndrome really meant as far as living a full life. And that moment was really what set me on the path to making the film in the first place.

Tim Villegas

The scene that we're talking about is the moment when the doctors are explaining that there's something different about Emilio and, and I believe what I remember is the doctor actually saying those words down syndrome, is that right? Sure.

Olivier Bernier

Yeah, the from the moment they took Emilio to the incubator, I knew something was going on. All the doctors were huddled around him. And I looked at Emilio and could tell it see the slanted eyes and and my heart was pounding in my chest, what's going on? Why are they not talking to us? And then the doctor comes over and he says your son shows five markers of Down Syndrome and he goes through the five. And at that point, it's just you feel like you're out of body. You just went through this experience. You're up for 50 hours or whatever it is, and then you're receiving and receiving this news and it see it's delivered to you almost the way it was delivered to us at least it felt almost Like your child is, is dying or something like that, like it was a very grave delivery of the news. And looking back on it, there's maybe a better way to do that, being that it's the first moments of your child's life, and you should probably be celebrating it no matter who your child is.

Tim Villegas

So in the film, it it shows both of you going through a process of thinking about Emilio's education, and what your hopes and dreams for him are. And also, I 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, and maybe, was there a moment that you're like, this is the right thing to do?

Olivier Bernier

I can start from I think Guild and I both share different perspectives, because of the came from the professional world of special education. But we both agreed early on that we wanted our son included in society, we would do whatever it would take to, you know, that would bring him to swimming lessons, we would do as many activities as possible with him just to be around other children. And this is before school. And we knew early on that inclusion in life was a goal of ours. But I had just assumed that schools were all inclusive at this point, because we're in New York, it's a really progressive city, in those teaching and integrated classes, and I was just flat out completely ignorant. So when we started talking about it is that had reservations and probably go through some of those.

Hilda Bernier

Yeah, definitely. I did have my reservations, as I mentioned earlier, because I want to give credit to the people in doing that are trying to do their jobs, like people that are evaluating for physical therapy and occupational therapy, and speech and all these, I feel like the Tao in may stem from those reports. Because it really painted a picture of my son, that was not exactly the image I had of him, from experience from being here with him every single day, seeing him working with his therapist from early intervention on a daily basis. Like I know, like he was in my mind that he is going to get to where he wants to be or where he needs to be. Like, I'm reading these reports. And I started like, second guessing my own knowledge, because I I read all the research when I was becoming a teacher. And we know that other research supports the fact that inclusion is beneficial for students with disabilities and students that don't have IEP s, the benefits are academic, and they are social. And there's no, there's no question that that is what we wanted at the moment. And that's what we are going to keep pursuing. Because there's no reason why he should be hidden away, he does have a very physical, visible disability. But at the end of the day, inclusion is just going to make everybody's experience learning experience, a better word.

Olivier Bernier

And the reports she is referring to are the evaluation reports, when they take your child, they look at them for an hour and determine what their future trajectory is going to be. But that's what they use. And then you go into this meeting, I'm sure we'll get into the IEP meeting, but they try to sell you a bad car essentially, and tell you that your child's not good enough. And, you know, if they're coming from that professional world, there's part of you wants to believe what they're saying, even though you don't feel it in your gut. And then it was really, I think visiting the Henderson school that kind of change your perspective on an inclusion. Yeah,

Hilda Bernier

seeing when they do it at the Henderson school was phenomenal. We it was a life changing experience to me, because you really can see like the possibilities. You can you. I got to see it firsthand how you had children that had real challenges that have speech delays, to children on feeding tubes, you had neurotypical children that were just hanging out with everybody else like it was there every day. There was nothing strange to them. are different. It was, they were all learning with each other in playing together, though. And it was also very interesting to see that everybody in that building all the adults in the building, we're on the same page. Because to make something like that work, everybody has to be on board. And that is something that, that it will be great to implement in other places. The idea that that, that, as an educator, you can teach everybody has to become more prevalent. Because, yeah, there are Genet teachers, there are special ed teachers, but at the end of the day, you as a professional, you need to be prepared to cater to everybody. So you never know, like some kids who don't have IEP s and they still need differentiated instruction.

Tim Villegas

One thing that I've always wondered about Henderson and I've never been I've only seen Dan Habib's film there. And then of course, your, your film. From what I understand Henderson's part of Boston Public Schools, that right?

Olivier Bernier

Yeah, Henderson school is a public school anyone right into it. And there's a waiting list for neurotypical children. They tried to accept as many children with disabilities as possible.

Tim Villegas

So again, not like it's not necessarily a criticism. But I wonder why. Since Henderson is so successful, why there aren't more schools in Boston that have adopted that. So I don't know if you have any insight about that. I've kind of wondered that. A lot.

Olivier Bernier

Yeah. So one thing with the Henderson school is that it's part of their mission to spread this concept of inclusion and show how it works, because it's one thing to read about it and to talk about it. And to actually see it in action. Like when did this I just changed her perspective, and 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 New York, let's put it that way. And what's unique about Henderson school is that it's K through 12, or preschool through 12. Okay, that that makes it slightly unique, but it's also one of the first it was Bill Henderson who started the school. It wasn't called the Henderson school back then. But he started the school because he was losing his vision. And he was a principal of a school and they wanted to push them out of his career. And he said, Wait a minute. That's not right. I'm going to start a public school for the deaf blind. And that's been the genesis of the school since the beginning. But yeah, there are other schools in Boston that are completely inclusive. Yeah,

Tim Villegas

I'm gonna have to get up there. I have not been to Boston, just out there.

Olivier Bernier

Yeah, it's something it's really something to see.

Tim Villegas

What was the immediate barrier for you coming in wanting an inclusive classroom in school for Emilio, what was the first thing that was that you ran up against? As far as getting him into school, or once we he was in school, if I remember correctly, it started with the film shows an IEP to for services in pre K, correct.

Hilda Bernier

I feel like that meeting was the first obstacle that we had for to get him into an inclusive classroom. And it was very upsetting because when Amelia was evaluated, he was under under three years, he was like, two and a half, probably. And at that meeting, they put the percent that so many roadblocks to prevent him from getting into that setting. That was really heartbreaking. Because I really believed that I was part of the team and that Olivia was part of the team that we could speak and from what we know about him, and what what our vision was for him and that somebody would actually listen by in the name of data in the name of data collection, they they had already decided that that he didn't belong in a general preschool setting. So for me, it was like whoa, wait a minute, what if these how it goes like these airily at three h three. And that's when I I was on the It's like a slap in the face. And I realized that we really needed to get an advocate in that we needed to draw our line in the sand and work for that.

Olivier Bernier

And then, at that time, we were really making a film about inclusive education. But we weren't really focused on Emilio's journey. He was part of the story, but it wasn't really the story. But we're making a much more cerebral film about what is inclusive education? How does it work? What is universal design for learning. And then as we're making this film, we see Emilio slowly getting pushed down this path of segregation, and two and a half years old. So we started filming all these things, and just muscling our way into these meetings with cameras, even though they really didn't want them. Because it was just shocking. From that meeting on it was just the whole thing. It was like, where am I living? How could they be telling it two and a half year old, that he doesn't belong in a classroom because he's never been in a classroom before? You know what, two and a half year olds have been in a classroom, right? So it was just from I felt like I was in bizarro world, and we just needed to capture it.

Hilda Bernier

The pitch was unbelievable. He's never been in a classroom, he's not speaking, he's not doing this, we feel a smaller environment will be better. And then he can move up. And just, it's unbelievable to think that a small child at that age has to work its way out of something, when he should have been just like, right off the bat just playing with the other kids and learning whatever they were learning and getting his services within that setting, which ultimately, it's what we were trying to push for.

Tim Villegas

Yes, yeah. Yeah. I think the whole film is powerful. The things that were really impactful to me were the IEP meetings, because that is that's the setting that I've been in, I've been in the role of an advocate and a representative of the district and advocating for the families. And it is, it's absolutely heartbreaking. And I felt that watching the IPS, because I you know, have been the district representative saying the words, right, about the data. In fact, that's so funny, you brought that up Hilda, in my training in the training that they, you know, the, my supervisor would give us on, you know, how to run an IEP meeting? And what if the parents disagree and stuff like that? I remember them coaching us that it always comes back to the data, because the data doesn't have a motion. That's what they said to me. Yeah. Yeah, that's what they that's the training that they give teachers, right? But how do you separate this kind of decision without any emotion,

Olivier Bernier

the entire trajectory of your child is being decided in that moment, New York, at least, 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 put into it, you know, you're really you're really feeling Wow. Glimpses of your son at 18 In that moment, and you're thinking about, who do I want him to be? And how can it not be emotional? But that's also why when people ask me, I'm always like, you have to get navigate, because it's almost too emotional. The moments too big. It's hard to be cool headed or to negotiator.

Tim Villegas

So I'm wondering, when you made the film, did you have a particular audience in mind to see the film? were you speaking to a specific viewer? I,

Olivier Bernier

as I was making the film, I really wanted to make the film for myself, before Amelia was born. So I was thinking about what would be understandable to me before my son was born. What was that bridge that would get me there to following this journey about IP, something I never thought about before Amelia was born. I wanted the film to be accessible to audiences that don't think about disabilities on a daily basis. The end of the day, I saw it as a story about our family being representative of what 1000s and millions of other kids across the world go through. So I really made it in a way that I tried to strip as much as the acronyms out of it as much. Some are still in there, but we try to explain them because it can be a little short. It was challenging for me going through it. And then the second thing is that we really wanted to make the film a journey. We wanted to make it experiential. So I think that one thing I'm proud of what the film is that it, I watch it, and it still does feel exactly like it was going through it the first time. My heart still pounds when I see the IEP meetings, I thought that would have worn off by now, but it hasn't. No, I

Hilda Bernier

mean, I have that feeling every year when we have to review the IEP.

Tim Villegas

So why don't we talk about where you are now? Are you still in New York City? Or, like, what's the status there?

Olivier Bernier

So we have to cross the river during the pandemic, we're in New Jersey now. We, we went through a pretty long process of with the district, and we got pregnant again. And we had a second child. So I moved to New Jersey to house a little more room. But we also, you know, selected a district that we thought would be the most open to having Emilio included