On Beauty and Blindness

Like far too many parents, Edith Lemay and Sébastien Pelletier were forced to contend with a terrifying medical diagnosis when a doctor found that retinitis pigmentosa–a disease that causes the retinas to slowly disintegrate–ran in their family. But, if that crushing news wasn't life-altering enough, Lemay and Pelletier received learned that signs of the irreversible disease were already present in three of their four young children. 

The Montreal couple could have easily wallowed in misery, mourning the sudden evaporation of life as usual. Instead, Lemay and Pelletier quickly realized they had a duty to show their children as much of the world as possible while they all could still see it. With the support of Pelletier’s employer, the family of six embarked on a year-long journey across the globe with stops in countries as varied as Ecuador, Indonesia, and Egypt.

Now, the family’s story is the subject of Edmund Stenson and Daniel Roher’s documentary Blink, which, after a limited theatrical run, will premiere on the National Geographic Channel December 16th before making its way to Disney+ and Hulu the next day. Though the film doesn’t shy away from the iconic nature images one would expect from a NatGeo production, it’s also a deeply affecting story that is unafraid to show the spectrum of emotions that comes with family travel in the face of life-altering news. 

Stenson, Lemay, and Pelletier sat down with The Pamphleteer to talk about the pitfalls of disability stories, the process of parenting on camera, and modeling strength in the face of adversity–even in the most difficult moments. 

These interviews have been edited for length and clarity.

Edmund Stenson

One of the aspects I most appreciate about the movie is its tonal shifts. It goes from hilarious and inspiring to raw gut-punch emotional moments right before one of the kids says something funny. How did you establish that through the visual style of the film and the narrative you developed? 

One thing that Daniel and I wanted to avoid from the get-go was making a melodramatic film that emotionally exploited both the condition of the kids and the parents who are going through this diagnosis. I think it's very easy to see this film as mawkish. And you might read a synopsis of the film and cynically think, “Oh, this is going to be over the top.” So, I think, for us, finding a way to create that balance was focusing on how life is made up of this wonderful interchange of joy and melancholy and happiness and sadness. 

On the one hand, we have the parents’ journey, which, for us, was a kind of journey of anticipatory grief as they come to terms with a future that they no longer possessed, and arguably we never do, because who knows what the future holds? But on the other side, we have–I hesitate to say innocent. I don't want to poeticize kids' experiences too much–but a sense of wonder. I think we always knew that we wanted to intermingle those things

One of the ways Daniel and I connect as filmmakers is because we make jokes constantly and see the world in this kind of absurd way. And I think kids are such a beautiful access point for that greater truth of how we experience the world.

This is a film that shouldn't be a downer, that shouldn't exploit the kids' condition. It should be a film filled with all the emotions we go through every day of our lives. 

There’s the problem of documentary where you're there to record reality, but there has to be some sort of understanding that total accuracy is impossible. The first way that plays out in this film is getting the kids to act naturally on camera, which I would imagine would be difficult. The second is your use of language because, when the parents are speaking in the formal interviews, they're talking in English, but their primary language in the film is French. Could you talk about navigating both of those levels of artifice and integrating it into this narrative?

It’s surprising, actually. Kids aren't the problem with being natural on camera. What I found is, if you make friends with the kid. I mean, I want to be clear that I'm a kid person. I love kids. The director of photography is a close friend of mine. He's incredible with kids. He's a storyteller. He's an uncle figure. And it didn't take long for us to make connections with the kids. They referred to us as Team Rocket, which, if you know, Pokemon, are the inept villains, so they had a kind of loving but slightly mocking relationship with us quite quickly. And I think with kids, that's really all it took. As soon as that was established, there was an ease with which we could let them be free. 

The most difficult thing, on a very technical level, was mic’ing up the kids. Sometimes, little Laurent doesn't want to be mic’d up, and the sound guy’s having to tell him, “You're a superhero, you're a secret agent, you need to wear this microphone.”  But once that's done, kids really are just themselves. 

In terms of the language issue, from my perspective, in an ideal world, my films would always exist in a purely vérité observational mode. I think that some of the interviews that we had at the beginning were necessary both to bring in a wider Anglophone audience but also because we just didn't have the footage of parts of their trip and the early moments in their life when we really needed to set the scene.

One of the ways that I think about the film is that we start off in a slightly more conventional documentary mode, and, as we get to know the family, the layers of artifice kind of peel away. We fall into something more observational. And that was intentional to a certain extent, in that I like the idea of bringing the audience in with one genre mode, and then slowly showing something, I believe, is a lot more authentic.

How did you develop the visual style for the film? 

I want to give a shout out to Jean-Sébastien Francoeur, the director of photography. He's incredible, and that is obviously a partnership between the two of us, but his talent is on full display in this film. We always wanted to display this interaction between the grand spaces and vistas in the world that could act as kind of metaphorical backdrops of the type of very human experience that was unfolding. We all have these ideas of what climbing a mountain represents metaphorically, or the psychic landscape of the jungle, or the spiritual landscape of the desert. So we wanted to give them their due and place the family in this kind of milieu– just put the human experience against this giant backdrop. 

The other strategy that we employed is trying to keep the camera as low as possible as often as possible. It's a simple thing to do, but it's the way that you achieve that feeling of the camera being like another sibling in the family. We tried to subtly bring the audience into a kind of childlike perspective of the world unfolding. This is something the cinematographer and I talked about from the beginning. We looked at Terrence Malick films, we looked at films that dealt with childhood, and we said, “How can we just gently make this point without bashing the audience over the head with that feeling?” 

What do you hope audiences get out of the film?

I want audiences and families to be able to sit down and watch this together. I think that you don't need to have received a serious medical diagnosis like retinitis pigmentosa to be able to connect to a family story when, at its heart, it's saying that none of us really know what the future holds. None of us have control over who we become or who we are in certain senses. 

Yes, we can grieve, but, ultimately, what determines who we are and what we model for our children is how we deal with that lack of control. The parting shot of this film is very much making the point that we all have to make our own way in the world, and there's something kind of unifying in that experience. We must be our own people in the world, and the best our parents can do is give us the tools to do so. 

In that sense, it's testament to my parents and to my family and to the love I have for them. So that's my very personal answer to your question.

Other than that, I think Edith and Seb show an incredible and demonstrable strength and resilience in how they've dealt with the diagnosis. And there's a lesson for all of us. Yes, they've had the privilege and the means to do this trip, but I don't think you have to have that privilege and those means to see how wonderful their attitude is. And I hope and believe that audiences all over the world are going to feel that and connect to them in that way.

Édith Lemay and Sébastien Pelletier

How did you manage the stress of international travel with four kids and the added stress of having a camera crew follow you around for all of these intimate moments?

Lemay: A lot of people say, “Oh, you're so courageous to go on a trip with four kids! It's hard.” But the reality is, being at home with four kids, and having that to-do list and all the activities is a lot more stressful and a lot harder, really, than being on a trip. On a trip, it's easy. You're always together, and you just need to find food and a shelter, and that's it. So really, it's a lot easier on the road. 

But life is crazy. Four kids here and the film crew? It was just an amazing experience because we bonded so quickly and they came with us only a few weeks at a time during the trip. It was like having friends come over. 

Pelletier: For the kids, having three other adults that gave them candies and never said no was incredible.

What reservations did you all have about telling your story on camera and how did you negotiate them? 

Lemay: When they told us that they wanted to come and film us, my first thought was, “Are you crazy? You want to come and travel?” I was really worried about the crew.

Pelletier: The only reason we said yes is that we would have nice videos for the kids. We thought a documentary was for a basement cinema, so nobody would see it. Now, it’s going to be exposed to the world with NatGeo and Disney, but that came much later. Then, it was a much simpler decision. It was more like, “Well, we'll have memories. This was an experience.”

Lemay: We didn’t think about how many people would see it. But at the same time, we were honest, and there's nothing to hide. We're just who we are. We're not trying to deliver a message to people. 

People are interested in our story, and we're happy to share it. The feedback we get from social media is that people tell us it’s inspiring and helped them. So, it was an incredible opportunity to be able to share it with more people. We have no reservations in front of the camera. 

The only thing that sometimes happens is that people have a lot of emotion towards our story, but it’s their emotion and it's stronger than where we are now. So we’ve gone out and someone has gotten emotional and cried. I’m like “This is OK, but I'm not there anymore.” It's hard when people want you to have more emotion about your own story than you really have.

How do you all balance the private and the public given the attention that this story has received? I have to imagine that you want to keep some things for yourselves.

Lemay: For us, the film is there. Our life is here. I think we are really privileged to be able to share our story and to give that back, because we're so lucky that we've been on that great adventure. And to be able to share it and to share how great it was for us and what we've learned from it is just an amazing gift.

Pelletier: We are in the moment because it's happening now, but we know that in six months, nobody's going to talk about it anymore. It’s not like we're getting recognized in the street. Even more so for the kids. They go to school. They're just normal kids. They play, they fight, they do everything they can do. So we take it as it comes, and it's a special moment.

What about the logistics of organizing this trip that might not translate to film have you found audiences want to know about?

Pelletier: It evolved as we traveled, but one thing we wanted to do was be close to people– staying at guest houses or at home stays or places like that. And that really made a big difference because it wasn't so much about how many activities we wanted to do in that city. It was going to one place, and then people would usually talk to us and suggest things. We adapted to wanting to get as close as possible to the people and the culture, and that really made a difference.

Lemay: Even if we had a lot more money to make it a really high-end trip, I don't think we would do it any other way. It's a lot more fun for kids to be with a family–with other kids–than to be in that big hotel. It's an amazing way to travel. So we're glad we had those restrictions. It forced us to have a meaningful experience.

Pelletier: The other thing is, don't try to plan everything, because it's not about the destination. And the most meaningful experiences are the ones we didn't expect. 

Has your extended circle of friends and family seen the film yet? And how did they react?

Lemay: Everybody reacted differently. It was really hard at least for my parents, because their [the kids’] vision is not yet affected. I think it's easy to forget what's in front of them. For us, we talk about it all the time, because we're sharing our story, so we're always in it. But for our extended family,  they know, but it's easy to forget in daily life. Seeing the movie really put that in their face. So I think it was very emotional for them. All those emotions together sometimes are hard to manage.

Blink will be available to stream on Disney+ and Hulu immediately after its December 16th premiere on the National Geographic Channel.