Jillian IlanaDecember 11, 2022Comment

Olivier Bernier On Forget Me Not And The Importance Of Inclusion In Education

Jillian IlanaDecember 11, 2022Comment

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Jillian Curwin: Hi everyone. Welcome to Always Looking Up, the podcast where no one is overlooked and height is only a number, never a limit, hosted by me, Jillian Curwin. Each week I'll be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week’s episode I sat down with father and filmmaker Olivier Bernier. Olivier is the director of the new documentary Forget Me Not, which follows his and his wife Hilda’s personal journey as their son Emilio, who has down syndrome, prepares to start school. We discuss the ongoing segregation of children with intellectual disabilities in schools, the societal and systemic barriers his family encountered, and the importance of telling their story. Let’s get into it.

Hi, Olivier.

Olivier Bernier: Hi, Jillian. How are you?

Jillian Curwin: I'm good. How are you?

Olivier Bernier: Good. Good. Thanks for having me today.

Jillian Curwin: Yeah, I'm very much looking forward to talking with you. Why don't you start by telling my listeners a little bit about yourself? Who you are?

Olivier Bernier: Sure. My name is Olivier Bernier. I am the director of the film Forget Me Not, a filmmaker, and the parent of two children. My oldest child, Emilio, is six years old now and he was born with Down syndrome.

Jillian Curwin: And how do you define being the parent to a child with a disability?

Olivier Bernier: Well, I think, I think really, I feel like, just like any other parent. I think we have the same challenges as any other parent. We love our children, our child as much as any other parent. I, I really don't see much of a difference except for that there's a few extra accommodations that we have to make to help ensure that he kind of is able to achieve his full potential.

Jillian Curwin: And can you explain, and I know this is kind of like, what the film is about, what these accommodations are and how you like, the journey you've had in getting these accommodations made for Emilio.

Olivier Bernier: Sure. Well, I guess it's easiest to just kind of start at the beginning.

Jillian Curwin: Mmhmm.

Olivier Bernier: When, when Emilio was born, I hadn't had the opportunity to spend much time with people with intellectual disabilities, so I was kind of just unaware. And also, I felt a little unprepared for Emilio. So there's been, excuse me, a lot of learning since the time he was born. And it's still learning, you know, how to best kind of set him up for success. But really, you know, it started early on. We had to, there was a lot of challenges just with his physicality. He was very low tone so just sitting up and walking and all those things took a lot longer, and we started to see other babies born at the same time of Emilio, as Emilio, doing those things sooner than he was so as parents, we always kind of felt behind. And then we had to remind ourselves that Emilio is going to be Emilio. He’s just on his own timeline and his own journey. So, I think that was the biggest learning, is to just be patient and to not set expectations beyond, you know, our control. So and then, you know, there was a, from there, there was a lot of early intervention. You know, the state of New York, provides a lot of early intervention programs and that really helped him excel and prepare him for his schooling years.

Jillian Curwin: Yeah. A lot of what you said kind of resonates with me and, knowing what my parents had told me about like, me growing up. As a little person, we do develop at a different rate in terms of like, physically like, what we can do, and get like, we're not on track with everybody else. And my parents, I'm the oldest, they had never been around another little person really, until me. They didn't know I was going to be a little person until I was born. And so, it was again like, this trying to like, figure out, okay, what is her pace? What does she need? And kind of realizing they we’re all, as I got older, like learning this together. So, a lot of what you said just resonated with me about like, you guys just trying to…It's kind of having to like, you're already trying to start to prepare to be parents, but then it's also like, oh, you also have to prepare for what is to be a parent with a child with a disability, and realize that it's different.

Olivier Bernier: Exactly. I think, there's no textbook, you know? You can't read in the manual like, you know, this is going to happen this day and this could happen another.

Jillian Curwin: Exactly.

Olivier Bernier: So that was the biggest takeaway is like, don't read the Internet.

Jillian Curwin: So then where, who did you learn from?

Olivier Bernier: Well, you know, I think, first of all, my wife was a special education teacher. So I think from that standpoint, she was very prepared as far as like, the school settings and, and helping me understand all that. But really, I think there wasn't any one particular person, but we did go to groups, and we met other parents of children with Down syndrome to kind of like, learn from them and, and just hearing their words helped a lot. You know, I remember actually when we were filming the movie, speaking to a parent up in Boston and, you know, he said his son is in high school. And he said, you know, you know, “Is your kid speaking yet?” And I said, “Oh, no, not yet.” And he said, “Don't worry, it'll come. Just to, just be patient, you know?” And it was like, it felt so good to hear that from another parent, you know, is very…He was right. Just be patient.

Jillian Curwin: Exactly. And again, like, same thing like, with my parents, like they went to the community and they had to learn. And it was so much of just them like, asking questions from average-height parents with little person children, and from little person, parents with dwarfism who are also raising average-height and little person children, and just asking questions. And I think that you're going to learn from them better than anything that is, if there is a textbook, you're going to, you know, it's not going to cover nearly as much as talking to the parents and talking to the actual people with that disability, because they live this life every day and they're also learning every day what it means to be a disabled person in a predominantly non-disabled world.

Olivier Bernier: Yeah, and I think that's also probably another lesson is that I, I don't think I ever realized how not set up this world is for people of different abilities. You know, I think that it really opened, it actually…Emilio kind of gave me a whole new view of the world and made me realize that, you know, this whole world has been created for the, quote unquote, average person. And, you know, there's so much work and opportunity to explore different ways of doing things to, to help everyone kind of achieve their full potential.

Jillian Curwin: Absolutely. And so then I'm curious, what inspired you to start the creation of the film? Like what, was there one moment that you said, I need to tell this story? What was the starting point for you with telling Emilio’s story?

Olivier Bernier: Well I mean, I mean, first and foremost, that, you know, I was a filmmaker before going on the journey of making this film. So I, I just always have a camera in my hand.

Jillian Curwin: Mmmhmm.

Olivier Bernier: And, you know, filming Emilio, whether he had Down syndrome or not, you know, I was just filming Emilio. And the, the idea to make the film didn't really happen until a couple of years later, after he was born. But I did know pretty early on that I wanted to use my craft as a filmmaker to try to impact and make the world a little better for him, or for future generations. So I, I didn't know what shape that would take or what that would look like. But, once we realized that Emilio would have to leave this little bubble of our apartment and our neighborhood and have to go out into the world and go to school, I started thinking about kind of the, my own history and the fact that I had never met anyone with a disability while I went to school, or with an intellectual disability while I went to school. And I went to a large high school, I, you know, my high school was like 2500 kids, if I remember correctly.

Jillian Curwin: Mmmhmm.

Olivier Bernier: And I started to think, how did I never meet anyone with Downs syndrome? Or how they never meet anyone with autism in my entire time in high school? I would have been open to meeting them, but I think they were just really segregated from us. And then I started thinking about that happening to Emilio and that kind of scared me. So, I wanted to explore what education looked like today for, for someone with an intellectual disability. And that's kind of how the, the film started.

Jillian Curwin: And, what does it look like today? Because, again, I'm very familiar with it from like, the physical disability side and recognizing, you know, the struggles or the challenges that my parents and I had to go through and getting accommodations made for me. But I don't know, and I would want to know, like, what is it like for a parent with a child with an intellectual disability, especially, you know, starting at the young age where you really have to be their advocate because, you know, and not knowing Emilio, but like it's in an age where like I didn't recognize my own disability, so I had to trust in my parents to be that advocate for me because I didn't know how to advocate for myself. So like, what has been this journey like for you and your family?

Olivier Bernier: Yeah, that's interesting. I think I feel like we're still early on, on that journey.

Jillian Curwin: Yeah.

Olivier Bernier: You know, but it's evolving every day. And just speaking to your last point there about Emilio one day being his own advocate, that's something that I, I would like to, t, not have to advocate for him at all. At some point, I would hope that he just advocates for himself. But for right now, we are his, his voice, so to speak, and we're trying to do what we think is the best for him. Eventually, he's going to have his own opinions and, and we're going to support that. You know, I think really, when you look at it, you know, the main thing that I wanted for Emilio is just for him to feel like he belonged. You know, I didn't, I didn't want him growing up to feel like he was excluded or, you know, you know, that, that he didn't ,that he didn't have the right to be with other children, I guess, is the best way to put it.

Jillian Curwin: Mmmhmm.

Olivier Bernier: So it felt really important for us that he be included in general education as much as possible.

But we also know that that's a big challenge because, you know, when, when I went to school, for example, you know, it was a blackboard and a textbook, and there wasn't much technology. You know, we'd have a little bit of time on the Internet, and that was it. But I don't think many schools have evolved that much beyond that, to where they're still teaching to the average student and the margins kind of get left behind. So, you know, I wanted to, to really make an effort to advocate for Emilio and to, to make sure that they are paying attention to him, you know, on, on the margins. So today, what the landscape looks like for people with intellectual disabilities, I think it varies greatly depending where you go. And, you know, we tried when we were making the film, we tried to be like, oh, let's go to Finland, let's see what their program looks like. And then you realize like, every town, every school is so different that there's not one like overarching, you know, technique or, or way of doing things. But what we do know is that schools are much more inclusive than they used to be, which is great. And the fact that we can even advocate for inclusion in general education is amazing because 30 years ago that wasn't the case at all. Like, we would get shut down immediately.

Jillian Curwin: Right.

Oliver Bernier: So I think the world is definitely improving. However, there are certain areas, certain school districts that just believe that segregating children with different abilities, different intellectual abilities, is the best practice. And, you know, I just disagree with that.

Jillian Curwin: I disagree with that as well. And I'm curious, I didn’t grow up in New York, but like, is that what it looks like here right now? Like, what does it, what does the schooling look like in New York?

Olivier Bernier: Yeah, well, New York is known as the most segregated school district in the country for both race, ability, and many, many other ways. But the segregation that happens is often, like, justified. So, you know, with Emilio, you know, as you’d see in the film, he was, he was turning three and they were trying to segregate him into a special class because they said he had no classroom experience and that he would be overwhelmed by the class. And then, you know, we asked the question, well, you know, no three year olds is really been in a class yet…

Jillian Curwin: Right.

Oliver Bernier: So why don't we try including him first? So that, that's kind of, you know, in New York, our experience, and I'm not sure, I don't think it's everyone's experience, but our experience was that he was, from a very early age, put on a track to be segregated because of the way he was born. And we, we just didn't feel like that was the right thing to do. So we, we fought against it.

Jillian Curwin: And what was that fight like? What were like, what was like…? How did you make your case?

Olivier Bernier: Well we, at first, we tried to make our case that, that we should try inclusion first, as IDEA outlines that every child should have the opportunity to be in an inclusive setting before anything else. But that didn't work. So we reconvened and we decided that we had to bring an advocate, and that's when we met Sara Jo from the National Down Syndrome Society at the time. And she came, and she really reinforced that what we were doing was the right thing, that, you know, we should kind of put a line in the sand at that early age. Because once he were to be segregated, that would often end up in a track where it leads to a lifetime of segregation. So, not only in school, but afterwards, you know, people just don't feel integrated into society because from a very early age, they were told that you don't belong, or, you know, you're not good enough or this or that.

So Sara Jo kind of really helped us both on a technical level, but also just reminding us that, how important what we were doing was at that early age. So that, that was the main, the thing that really helped us. Ultimately, the school district did, we were able to negotiate with them after, after a while. And they did allow him, they kept his segregated recommendation. However, they found some kind of loophole where they were able to include him in 50/50 integrated class, pre-school class in, in New York. So we got somewhat lucky. But I think the important thing to remember, and with the film in general is that, you know, Emilio's story is, is riddled with specifics to him. But I think this is a story that a lot of parents with disabilities and a lot of children with disabilities experience on some level so...

Jillian Curwin: Absolutely. And like, I'm thinking back to when I watched Crip Camp, which is the documentary about the disability civil rights movement that came out like, right before the pandemic started but, as everyone was watching it during the pandemic. And, you know, seeing that back in the early seventies like that they were still pushing for this segregation of people, with students with disabilities that, you know, advocates like Judy Heumamn, who had a physical disability, went to school, you know, went to a school basically for disabled people. But it wasn't really, it was basically a way just to say that they were putting them in school, but it was still keeping them separate away from the non-disabled students, and weren't giving them the same opportunities. And, you know, it's like, we want to say that so much has changed. But then like, hearing your story, it's, you still have that question, like what actually changed in that there's still this fight and this belief that disabled people still have to be separate from non-disabled people, that we can't, you know, yes, we do things differently, but we still are able to learn. We still are able to be amongst other people. We should be allowed, you know, like it shouldn’t, we shouldn't have to necessarily be fighting for this. We recognize that we have to. And it's hard, especially because when you're, they’re trying to do it at such a young age where again, you still don't, maybe don't, necessarily fully understand that they are disabled. And, you know, it's trusting that their parents are going to be their voice and listen to them. And, you know, like it's just, and again, like you said, it's, every person’s different. And there are so many people who like, don't have that, who weren't able to have, you know, to fight the fight and be successful. And it's like, recognize that like the work that you're doing, the work that I hope I'm doing is like to advocate for the community at large and say what is still happening despite all the, you know, what we saw in Crip Camp and with the ADA, there's still so much work to be done.

Olivier Bernier: Absolutely. I think, you know, we make a point in the film to show what things were like in the seventies and eighties with the institutions, to show that there has been progress. And we also show a school that is, I think, you know, the top tier of public schools practicing inclusion in Boston. And, you know, we show there, there is a pathway like, this exists. Like, we don't have to reinvent the wheel here. We just have to work together to implement these different teaching techniques. And we can teach everyone in the same classroom, and children can learn from each other and with each other.

Jillian Curwin: Exactly. And when advocating for Emilio like, what was the biggest like, what were they saying in the, either the school district or the administrators like, what was their pushback in the sense of saying like why they wouldn't allow him to be with the other students?

Olivier Bernier: Yeah. Going back to that first meeting, I'll never, ever forget, you know, they, they brought out this chart, and it was a bell curve, and it felt like out of a movie, you know? And they told us, after the evaluations in which Emilio sat in a room for an hour and they asked him a bunch of questions, they said after the evaluations Emilio landed, well, he's not on the curve. And, you know, I left that meeting, and the conversation got captured on camera, but I left that meeting just thinking like, man, can’t they at least make a curve that fits every child that they're going to be evaluating?

Jillian Curwin: Right.

Olivier Bernier: And that, that was the kind of thinking that was just, thought was so archaic and so, so leftover from a different era. It just seemed so old. And, you know, so I think that moment just will always resonate in my head that there are some people in the schools that just have, I think, an old way of thinking or, or kind of stuck in a different, different time, you know, where people of different abilities can’t achieve the same things that typically developing children can. And that's such a wrong way to look at it. You know, I think the right way to look at it is like, not that he doesn't fit on the curve, but how can we make the curve fit him, you know?

Jillian Curwin: Right. That's the right way to look at it. Absolutely. And it's, again like, I think it carries over into like where, you know, as adults and like, seeing like where disability is outside of like, once the person grows up and like, still try to like, be put down and like, you know, the ADA, it's like even just trying to get that enforced and, you know, it's, it's like on the burden is always on the disabled person to say why this is wrong, when it should be clearly understood. And like, you know, even now I'm 27 and I feel, I feel like sometimes, like I'm just fighting just to show that I, that I deserve to exist. And I question like, why is that okay? Like, why should I have to fight for…? Like, we shouldn't have to. And yeah, I think it just goes back to like, how society has treated disability, and its beliefs about disability, and that even with, you know, the ADA with, even now with Crip Camp, which I think so many people have seen, people just don't want to change their perceptions on what it means to be disabled. And it frustrates me.

Olivier Bernier: Yeah, I don't blame you. I, I think there's so much work to be done. And really, I think where that work, in my opinion, needs to start, and this is maybe just my bias, but, I think it really needs to start with the parents of typically developing children. Because, to be honest with you, before Emilio was born, I was completely blind to inclusion and the subject matter. I just wasn't aware of it. It wasn't even on my radar. And I think we need to, you know, do a lot. And I hope the film does a little bit of this, which is to kind of put it on the map of, of people that might not think of these, the subject otherwise. And, you know, when you take intellectual disabilities as well like, it's, you know, it's, it's one of the least vocal groups in terms of, you know, they're not necessarily, you don't see riots in the streets, you know? But there should be. There should be, there should be, not riots, I shouldn’t say riots.

Jillian Curwin: Right.

Olivier Bernier: But there should be, you know, some, some marches. And, you know, I, I think it's, it's our jobs as advocates for our children and eventually, you know, I hope Emilio becomes his own advocate, to say something like, you know. I, I hope Emilio comes away from, from his school years saying like I belong. Stop telling me I don't belong, you know.

Jillian Curwin: Exactly. And I think, you know, you pointed out like, with wanting to see it and like, maybe we're not seeing is like, the disability, the protests and things like the 504 Sit-Ins, that wasn't taught to us in school. I didn't learn about it until, really until watching Crip Camp, and I think that is doing such a disservice. And like you said, to, you know, when it happened, and the fact that it wasn't necessarily written in these textbooks, so then these students who are growing up, and who are becoming parents, and raising their children, and they're not teaching their stud-, their kids what, you know, what happened. And, and, you know, I see it on the street today with how, walking down the street and seeing kids and I, you know, I, I recognize that they're kids and they don't know. So that's why I always look to their parents to see how they respond. And some parents are just kind of like, they’re just kind of like, you know, don't point and stare. Some parents will, will be, do things that are worse and like, I wish that there was like, that parents would say, you know, like say hi or ask a question. And because like, I recognize that, you know, for me, I might be the first little person that they're seeing. And I recognize that a kid's going to be confused. And so ask the questions. And I think, you know, I think you raised a really good point that it's, you know, it does and should start with parents of non-disabled children teaching their kids about disability and like, how to treat them like a person. And again, it seems so simple and yet it doesn't always happen.

Olivier Bernier: Yeah. I will say, you know, there's, it's, and, and really it goes back to the schooling and inclusive education is that, you know, the more exposed you can be to, to people that have differences from you, the more you're going to grow up to be accepting of them. And there's not going to be a barrier between you and those people. I think for myself even, to speak, to be completely candid, you know, meeting, the first time I met an adult with Down syndrome, I didn't quite know how to act around them.

Jillian Curwin: Mmmhmm.

Olivier Bernier: And now I'm very comfortable. But it was just, it took a little bit of learning, and it took a little bit of effort. And, you know, I think that had I gone to school with children with Down syndrome, I would be completely comfortable from the start. And so that, that was like some learning. And I think the more that we can expose children to all different types of children in schools, those barriers, and those, those guards will just drop. And, you know, society will be a lot more open and a lot more accepting of, of people with differences.

Jillian Curwin: I agree. I'm curious like, when you were starting, when Emilio was, like old enough to go to school and you're starting like this, I, I guess process of like, getting him into the classes where he should be, you know, like… I guess, like, what was your biggest fears during that time?

Olivier Bernier: Well, my biggest fear is that they would say no, and then we'd have to go to court and battle it, and that the battle would drag until it was too late. You know…

Jillian Curwin: Mmmhmm.

Olivier Bernier: The biggest, you kind of touched on it earlier, there's these laws now, like ADA and IDEA, and they're super important but they're, they're almost seen as more as guidelines. And if you really want to act on the law, you have to, to sue. And it takes a lot of money to do that. Not everyone can do that. It takes a lot of time. And, you know, childhood is over in the snap of the finger. Like if, if you're, if you miss it, you miss it. And, you know, Aiden is featured in the film. He, his parents are amazing advocates for him. He was included in an elementary school, and then in middle school they said, all of a sudden, you can't go to this school. We're going to bus you an hour away to a special program because we don't even have this special program in our school. So they were bussing, they were suggesting that they bus him an hour each way, to and from school, and that he wouldn't be able to go to the same school as his sister and brother. I mean that's, if that doesn't, you know, bump up against the law, I don't know what does, you know. So, but they're fighting a legal battle, and it's been going on for years. And in the meantime, the person who loses is Aiden.

Jillian Curwin: Right.

Olivier Bernier: You know, Aiden doesn't get those years back. And, but what I think is important is that they are fighting, and they're continuing to try their best. And that fight that they're, that they're proceeding with, is going to really help impact future generations of children like Aiden. So, it's really important work.

Jillian Curwin: Absolutely. And recognizing that Emilio was very young, that he was three, I think, when you said, when you started all of this, you know. As this is going on, and as he's getting older, you know, what does he, does he have an understanding? Has he said anything to you that kind of like gives you a glimpse into what he's thinking and feeling during this whole time?

Olivier Bernier: We haven't really gotten a good sense of it, that directly. Emilio, his verbal skills are, are limited, so he can't express himself in that kind of way, but he does express himself in other ways. And I know that, for example, he doesn't go to school during the month of August and we see like a real regression in just his social interaction, and he becomes less excited. And then, as soon as school started in September, he's just like, back to himself. He, he loves being around the other children. He loves going to school. So we do see, we do see a positive reaction to him going to an inclusive setting, which is really, makes it all worth it. I mean, it just makes it all worth it, you know, when you see him. We just had the Halloween parade the other day, and just to see him with his buddies and hanging out, and it's just, it just fills me with joy. So, you know, it does make it all worth it. And I hope that one day, if he's unhappy with this situation, that he can express that too. But right now, it's kind of like a guessing game sometimes.

Jillian Curwin: Gotcha.

And I guess, like, was he, like aware that like, you were filming, that you were documenting this? Like, did he know that you were kind of telling his story?

Olivier Bernier: I don't think he did. I, we, we showed him parts of the film and, you know, he's like, “Oh, is that me?” And, you know, as I don't think he could fully grasp like, what the film is about. And to be fair, it's more of an adult film, I think. But he does see himself and I think he's, he's pretty proud of his performance in the film. He like, he likes looking at himself. You know he, and now I think he knows that he's a little more shy on the camera these days. I think it's just like an age thing. So, you know, he knows that, you know, what's being shot in the camera might end up on the TV, but he's also, he's such a performer. I mean, he just, he just loves being in front of crowds and everything. So, I think, you know, I look forward to the day when we can sit down and watch the film together and have kind of a discussion about it. Yeah.

Jillian Curwin: I was gonna say. That was like my next question, what do you hope like, in years later when he sits down and watches this film and looks back at his younger self and sees what you guys were doing, like, what do you hope he takes from it?

Olivier Bernier: Yeah, I don't know. I, I remember before we started making the film, a really good friend of mine asked me that question. You know, and it's been in the back of my mind the entire time, like, you know, how will Emilio feel about this, that we put these really private parts of our lives out into the public? And I hope that he's able to take away that whatever we did was to try to make the world a better place for him and, and for other, other people with disabilities. So, I, I hope that's the takeaway. I'm sure is some of it, when he gets to a certain age, might be a little difficult to see, or a little confusing because, you know, just as people and my wife and I, Hilda and I, were very different people when Emilio was born versus now. I understand the world a lot differently now. But, man, did we have a lot of fun in those years, you know? And so I hope he, he remembers that, and he gets to see those home videos. That was the best part of making the film was the first like, 20 minutes. It just felt like cutting together a fancy home movie, you know.

Jillian Curwin: I was gonna say like, is there like, one particular moment… Like, I recognize that the film has come out yet like, that you're really proud of?

Olivier Bernier: Well, I'm really proud with the film as a whole. You know when, when we made the film, so I do a lot of commercial work that's a little more flashy, and when we made the film, I really just wanted the story to speak for itself, and to let the filmmaking kind of disappear. And I think that's pretty successful. I, I think we also had a lot of challenges in making the film. You know, any time we talk about education, it's riddled with acronyms and really complex kind of, theoretical subjects that nobody really understands besides teachers. And so I think we did a good job at kind of simplifying it in a way that, you know, I could understand, for example. So, you know, I think I'm pretty happy with the film. I think maybe the standout moments for me are just, it's not really something I did, but more something Hilda did. I'm just really proud that Hilda was able to open herself up so much and to, to let us in the way she did. I, I think those moments stand out to me the most, and are certainly the most personal, were the hardest to film. And, you know, we definitely had a conversation afterwards. You know, if we, if I could put that in the film. And she was very willing because she knew, she knew what kind of impact it could have.

Jillian Curwin: Absolutely. And what do you hope, I guess, other parents in your position with a child with an intellectual disability, a young child with an intellectual disability like, what do you hope that they take from watching your film?

Olivier Bernier: I hope that parents watching the film take away a sense of empowerment. Things didn't always go so well for our story with Emilio, but, you know, things will get better. And don't let go. Don't, don't stop the fight because you have to do what's in your gut. You have to do what you believe in. And if you believe that your child belongs somewhere, you have to advocate for them. And, and I hope the film empowers other families to do the same.

Jillian Curwin: And to follow up on that, what do you hope the non-, predominantly non-disabled society at large, particularly those at, you know, in education, you know, from school principals to teachers, all the way up to administrators, to the government, you know, to the Department Of Education, what do you hope, when they see this film, that they take from it?

Olivier Bernier: Well I, I think, you know, to step back for a minute, I think that teachers are probably the most important workers in our society. You know, I think it's one of the most important jobs we have, and we don't give it enough respect and, no matter where a teacher lands on this philosophical stratosphere of inclusion, you know, I know that everyone's there to try to improve the lives of the children they’re with. I hope that future generations of teachers see the movie and they look at disabilities differently, and look at inclusion differently, and think of it more as problem solving. You know, how, how can we include this child versus, you know, some of what's going on now, which is how do we get this child out of our class? You know? And so I really think that the change starts with teachers. Teachers eventually become administrators. And the most important job in the school is the principal, because it really starts with the principal and their philosophy of inclusion. So, you know, I hope the film gets passed around, and shown in college courses and, and wherever so that future teachers can just have this as a resource.

And, and then regarding policymakers, you know, I, I honestly think the laws that are there are, are pretty good. The problem is that no one's holding the schools accountable. Like I kind of alluded to earlier, you can get in a lawsuit with a school, with a school, lawsuit with a school, but it might last, you know, could, it could last ten years. I think there's still some lawsuits in New York City from the seventies that are ongoing. So these things, you know, they don't end quickly. And, you know, if there was some kind of method of holding schools more accountable, and there, there is. The federal government holds funding back and, you know, different things. But as you can see in the film, there's still a, a systemic problem. There's a systematic way of segregating these children. And when you try to fight it, you kind of hit a brick wall. And, you know, so I, I think from a policy standpoint, I hope there is more checks and balances in regards to how schools are implementing the law.

Jillian Curwin: I agree. And I think, you know, there's one thing that I remember from the trailer, and I'm not, I don't think I'm going to actually be able to paraphrase correctly, but someone is saying, I think in voiceover, how this doesn't just affect disabled students. This will eventually affect students of different sexualities, of different races. Like this, disability issues affect everyone. And, you know, that's why, again, it's so important that the parents are being advocates for their child and doing this because this sets precedent for, you know, how we treat students that are different and not just be, you know, whether they're disabled or not. And I think that really, you know, that really resonated with because I think it's, again, something that people don't want to talk about when talking about disability is that it really affects everyone, whether or not you are disabled, and that these issues matter. Because if we're saying, okay, it's okay to treat one group of students differently just because they're disabled, because they're different, you know that, where is that going to go? Like that, that gives that justification and that justification just can't be there anymore.

Olivier Bernier: Absolutely. You know, I think that, you know, one thing I learned in making the film is that if people can accommodate people with disabilities in a classroom, it makes the classroom that much stronger because they're implementing strategies that will be used by everyone, you know. So, for example, an example that was given to us is if you, you know, a wheelchair ramp, right? A wheelchair ramp allowed a person with a wheelchair to access a doorway instead of using stairs. If you can do that with the way children learn with intellectual disabilities, well, then everybody is going to benefit from that. So, the more you can teach to the margins, the more everyone gets better.

Jillian Curwin: Exactly. And I know it's been said many times on this podcast and within the disability rights community, you know, making something accessible no longer renders it inaccessible for the non-disabled people. It just makes it more accessible and brings more people in. And again, I think that's just so important. That's really what we're advocating for, is just to be included.

Olivier Bernier: Absolutely. And I, I think that's a great way of putting it. Yeah, I, I can't see, there's really no downside to it.

Jillian Curwin: None.

Olivier Bernier: I know, though. I can see if you're just coming fresh into this, you know, like, like myself six years ago let's say, I can see how it could be a challenge for people to think about. Well, how can a person that learns at a slower rate be in the same classroom as someone that learns at a really fast rate? And I, I can see that challenge of understanding that. But the fact is, and I hope the movie sheds light on it, that there's so many methods to accomplish this. You know it's, one quick example is that someone might learn math really well from someone writing equations on a blackboard, but someone might learn better with blocks and actually stacking them up, and dividing them, and multiplying them. Just two different ways of learning for two different types of learners. But, you know, once you incorporate different methods, everybody benefits from it.

Jillian Curwin: That's a really good point. And I think, you know like, we all, everyone learns in their own way. And so, like, I think this is again like, figuring out what works best for them, but also, but that doesn't mean that you have to keep them apart. And I think that's, I don't think that's the answer. So I'm very, you know, I'm really excited to see this film and to see, you know, to learn from it for one. Again, as someone who didn't, whose fights with the education system was a little different, to learn and to, you know, keep you know, these stories need to be told. These stories need to be told because that's how change happens. If we, you know, we can't be ignorant to it anymore.

Olivier Bernier: Yeah. And I think also, you know, podcasts like yours are so important to just get the word out there and to, to, you know, help enlighten all of us of what those challenges might be. And because when, you can't solve a problem, until you identify what the problem is, you know, for example. So, if people don't know that it's an issue, if people don't realize that segregation is happening on a huge scale in schools for people with disabilities, then how do you solve the problem?

Jillian Curwin: Exactly.

Olivier Bernier: So, you know, kind of brings it to another point is that, you know, just the term special class is like one that's, you know, one that I think we've kind of used as a way to, to say, oh, you know, our child's going to a special place, he’s going to a special class. And, you know, really, if we were to call it a segregated class? And I think that we would, we would be quicker to get rid of those classrooms.

Jillian Curwin: Yeah, I think the language we use is really important. I think it's why there is such a push to get rid of the term special needs because again, it's not, we're not asking for, you know, our needs aren't special. It's just, it's what we need to learn, to exist, to live. We're not asking for special treatment. I think, you know, we're just asking, we need accommodations, or we need things to be done a little differently. But that doesn't make it special. It doesn't make it, you know it's, yeah I think that's, like you point it out exactly, the language used is important, why there is such a push to not use special needs anymore, and special education.

Olivier Bernier: Yeah, yeah words matter, you know. And it's, it's not the only thing that needs to be fixed, but it's a start, you know?

Jillian Curwin: Yes, exactly. There's so much more. But again, it's a start.

Who do you look up to?

Olivier Bernier: Who do I look up to?

Jillian Curwin: Mmmhmm.

Olivier Bernier: As, well, there's, that's a great question. Let me think about that for a minute. I, I will say I've always looked up to my father, you know, and I, I think he's a great man. And I hope that, you know, Emilio looks up to me one day, so I, I try to be a good example for him.

Jillian Curwin: Love that.

And, are there any questions I have not asked that you would like to answer?

Olivier Bernier: That's always a challenging one. Well, yeah, I think, let me think here. Is there anything else I want to mention? Not really. You know, I think that I can tell people where to see the film.

Jillian Curwin: Yeah, I was going to ask that. That was my next question.

Olivier Bernier: Actually. Yeah. So the film, the film was just released on, a couple of weeks ago, which we're really excited about. I had done a festival run up till then, and the Cinema Libre, the distributor, has done a really great job of doing outreach and getting the film out there. Currently it's available on DVD, and Amazon Prime, and Vimeo, and soon it's going to be available in a lot of other streaming services. And also it's available for educational resources. So there's like, an educational DVD that will be coming with different discussion guides and different thought starters for classrooms.

Jillian Curwin: That’s awesome. And where can people first, where can people go if they want to just learn more? If they are a parent with a child with an intellectual disability, or if they hear this conversation and want to learn more, what resources can they go to first? I want to start there.

Olivier Bernier: Yeah so, on our website, forgetmenotdocumentary.com, also FMN.com, there's some really great resources that we've collected throughout the research of our film, and we've put them on the website. There's different ones regarding organizations that help with inclusion. There's just some resources about what inclusion is. And you know, there's also some different links to books. Thomas Hare, who was very important to the creation of this film and has recently passed away, is no longer with us, wrote some great books about inclusion and ableism, and spent his entire life in the field. And, you know, if ever you want to learn anything, I recommend reading his work.

Jillian Curwin: Awesome. And where can people follow you and, you know, see your story, see Emilio's story? Where can people follow you?

Olivier Bernier: So, we have our social media accounts, which I can't think of them right now. Let me see if I remember them. No, I don't. But I'm sure you can put them in the link to the podcast.

Jillian Curwin: I will.

Olivier Bernier: But yeah, we're on Instagram, we're on Instagram, we're on Twitter, we're on, yeah, all the social media platforms. And of course, if you go to our website, you can get the link to those as well.

Jillian Curwin: Yes, I will have links to all the social media, links to the website, and any sources that I think I should link to as well, as well as ways to watch the film, which I highly encourage you do so. And I will include a link to the trailer so you can see that first.

Olivier, this has been a great conversation. Thank you so much for coming on, for talking about the film, for sharing Emilio's story. It has been truly a pleasure talking with you.

I like to do kind of an icebreaker, but I do it at the end because I think it's more fun that way. So, I have five categories and I just want to hear your favorite in each one.

Olivier Bernier: Okay. Well, thanks. Thanks for having me. And I look forward to the icebreaker.

Jillian Curwin: Let's do it. Okay, first is favorite book.

Olivier Bernier: My favorite book. I have to go with Catcher in the Rye, I guess, just because it's an oldie but goodie.

Jillian Curwin: It's a classic.

Favorite TV show.

Olivier Bernier: Ooh, that's a tough one. I think I would have to go with, I love Breaking Bad. I thought that was a great show.

Jillian Curwin: Yes. Favorite drink.

Olivier Bernier: Alcoholic or nonalcoholic?

Jillian Curwin: However you wish to answer that question.

Olivier Bernier: Well, I would say I love beer, so I'm a big fan of craft beer.

Jillian Curwin: Okay. Favorite piece of advice you've ever given.

Olivier Bernier: Mmm. Just to remind people to follow their gut.

Jillian Curwin: I like that.

Last one, favorite piece of advice you've ever received.

Olivier Bernier: My favorite piece of advice I've ever received, off the top of my head I’ve received a lot of great advice over the years, and even in the making of this film. But I think the, the thing that, the advice that I received, is to follow through and to finish. So, the most successful people in the world are people that finish. So, you know, it's, it’s great to have ideas, but if you don't follow through with it to the end, then it's just an idea. And it's, so to any creative out there, you know, follow your gut and, and go to the finish.

Jillian Curwin: That is a perfect note to end on. Olivier, again, thank you so much, for coming on, for talking about the film, Forget Me Not. I will have links to watch it, links to the trailer, links to resources, links to follow, all in the show notes. So, go watch it. Let us know your thoughts on the film. And would love to have Emilio come on one day, if he's up for it. I would love to talk to him as well and hear his story in his words, he’s invited. You are welcome back any time. It was great talking with you.

Olivier Bernier: Thank you so much for having me.

Jillian Curwin: You're welcome.

The final, final thing I just have to ask is for you to remind my listeners, in your most fierce voice possible, that height is just a number, not a limit.

Olivier Bernier: Height is just a number, not a limit.

Jillian Curwin: Always Looking Up is hosted by Jillian Curwin and edited and produced by Ben Curwin. Please make sure to rate, review, and subscribe, and follow on Spotify so that you never miss an episode. Follow me on Instagram, @jill_ilana, and the podcast, @alwayslookingup.podcast, for updates, and check out my blog, JillianIlana.com, for more content about what it is like to be a little person in an average sized world.

Thanks for listening. See you next week.