POV: For those who have not seen the film, can you give us sort of a short description about what the film is about?
Jason DaSilva: The film really just follows me over seven years after I was diagnosed with multiple sclerosis, I turned the camera on myself and I really didn’t know what I was about to get into, I just knew that my body was going to deteriorate. Over the course of seven years, so that means I go from walking, to using a cane, to a walker, then to finally a scooter. The film is really about all of the incidents that occur in between all that.
POV: Alice, tell us a little bit about how you met Jason and what were the circumstances?
Alice Cook: Well, my mom actually has multiple sclerosis like Jason so we met at an MS support group and I don’t know we met there and then we just started hanging out a little bit and I thought he was really fun and interesting and then we eventually started dating and all of that is part of the film.
DaSilva: You have to keep in mind that during those seven years, I was filming everything so even on our first date so, I just brought along the camera just to film these incidents, just because my life was a movie at that point. So I just kept the cameras rolling.
POV: And initially when you both decide to embark on a long term relationship, how comfortable, Alice, were you in being filmed in this way on all these dates?
Cook: I wasn’t at all. I still hate being on camera. It was uncomfortable but I did, I was helpful, at the beginning I realized that so much ends up on the cutting room floor and doesn’t make it into the film so that was helpful. I had this idea in my head that basically everything we were shooting wasn’t going to go anywhere and no one would ever see it. So that’s sort of how I survived the camera being on.
POV: Now you and I met first at Tribeca many years ago and I have to say, for me when we first took a look at the film, it was a multi-disciplinary film if you will. Tell us a little bit about that creative process.
DaSilva: Growing up I was one of these artist kids that you know always had a sketchbook with him, I would take photos, I would do some video work and then lo and behold I just ended up making one film called Olivia’s Puzzle which was on POV and that was in Sundance and all of a sudden I was a documentary filmmaker so it was fun. I just kept on making films. I loved it because you have all the elements to think about, so you think about sound, you think about the way things look, so I did everything myself and then yes, it was natural and it was normal for me to pick up the camera and start this film. But it wasn’t normal to be the subject of my own film. So that was the tough part about it. But once I got over that it was just, it was like everything else. It was just keeping creative.
POV: One of the heart warming scenes in the film, for me, was when you were trying to describe to your mother how to compose a shot. Tell us a little bit about her creative process and you working together with her.
DaSilva: So the first thing I did is get a camera that everybody can use. It’s a really easy to use Sony HD camera and then I would just literally just give it to everybody. She picked up on it really fast. My mom’s not that great but she’s not that bad of a shooter, so by that point it had been six years of doing the film and she was used to go around and shooting. She actually kind of loved it. So she was having fun and yeah, it was just a summer’s day in New York City, we were having fun and doing a graffiti shoot.
POV: Now Alice, we see you in the film as you beginning to learn how to produce and edit, et cetera. Tell us a little bit about that part of the creative process.
Cook: I think Jason, in meeting him, awakened in me this sort of repressed creative person that had sort of been dormant for so many years and at first I was really hesitant, very scared to sort of dive in, but I remember the first time I picked up the camera and started shooting something and I was like oh no, now I’m really involved in this project. But it just sort of evolved. You know, it occurred over a span of I guess three years really so it was like little by little and then what was nice for me was because I’m a little bit, I was a little bit hesitant was that it was almost like required or needed because as Jason sort of disability evolved, it was really urgent that I be part of the project and help.
POV: Now, what are the challenges as a filmmaking team, as a husband and wife with a child and a small space, to produce at this level. I was watching Jason kind of try to describe to you what he needed and what he wanted in the film and I thought, “Oh my god, I might clobber him.” And you were very patient and you again were very giving in this process. Tell us a little bit about, because some marriages are very strained by trying to work together.
DaSilva: She’s not always patient.
Cook: That’s true, I’m not always patient. I feel like the film painted me in this wonderful light in that way but yeah, it’s like a constant struggle. And now I have more of my own vision for things as well now that I’m also a filmmaker and so every day as we continue on our new projects it’s always like a back and forth.
POV: Now how did the making of the film change you? Do you think it changed you?
DaSilva: Not me as a creative person as much, I mean the one thing that I had to get used to was all of a sudden I was in this mode of, it’s called participatory documentary — so being in front of the camera and kind of being the guiding subject and the interviewee and the interviewer at the same time so it changed me that way in the way that all of a sudden behind the camera wasn’t the same anymore. But it changed me in the way that I think I was more restricted in my last films where I was trying to be very controlling in how I did things. But for this film and it’s, yeah, it’s tough to say this but I kind of had to let go a little bit and see what I got and see what other people give for me. And that’s what I did. So now as a filmmaker and as a creative person, I just kind of see what I can get through collaboration with other people.
POV: And how did the film change you?
Cook: Jason, when I met him, he was already at this point in that like in being a subject of the film, he was comfortable sort of challenging himself and pushing himself to be more intimate with the camera and sharing what was inside and I think I started doing that too. And I think that was a really interesting part of the process, learning how to share and be vulnerable and…
DaSilva: We kind of got to the point where we were like egging each other on, like how amped up can you be about the process of making the film or what kind of questions could you ask me or I ask you to totally amp up the film. And so that towards the end of the film when we were like talking to each other, talking about things like our sex life or just living together, things like that, that’s when I think we got to that point where we were really at that peak of being creative together.
Cook: Yeah, and I think I noticed in watching other films that the moments I really appreciated were the ones where people almost did share too much or like got to a point where you were really in the window and so I appreciating what others gave in that way I think we wanted to kind of do the same, yeah.
POV: Was there any moment in the making of the film that you really said to yourself, “I want to turn the camera off. This is too personal. This is too political. I have to be careful with an issue.” Was there any time where you just felt like, I can’t do this any more?
DaSilva: Yeah, I wanted the camera off by like year three like around the time where I started getting a walker, getting a scooter afterwards and using a wheelchair. I was like, I really don’t want this stuff on film anymore. Alice wasn’t in my life and yeah, I was just going through like a dark time, you know, when all of a sudden I was just filming myself getting worse and worse and worse. So there was nothing really to look forward to but that was the point where I wanted to shut off the camera but I just kept it rolling because I told myself like from the beginning, one thing I’m going to do is just always keep the camera on. So I have tons and tons of footage but the reason why the film is so great is because I picked the best of seven years of filming and that’s what we have so I’m glad I kept on going.
POV: Was there any point where you felt like I don’t want to be in this film anymore?
Cook: If you could see some of the shots in between that didn’t make it into the film, there is like footage of me saying like why is the camera on. I want the camera off. Turn it off and like yelling and probably worse than that and like…so yeah, there was like definite moments. More from me than you. You’re like…
DaSilva: I just got used to it. But also, I made a pact with myself that the camera doesn’t shut off until this film is done. And yeah, so I made that in year one so that was when I first started to film back in 2006.
POV: Your family obviously has seen the film. How do they feel? how does your mom feel about her portrayal in the film?
DaSilva: At first when the film first premiered, that was the first time she saw it actually at Sundance. She was kind of just like shrinking in her chair. During the Q&A, I asked her if she would come up. She wouldn’t come up. But now I think she’s become a lot more comfortable. And now she’s actually going to film festivals and doing Q&As herself, ones that I can’t do myself. So in a way, it’s opened her up, the whole filmmaking process and the distribution process of a film, has opened her eyes up a little bit to that she can be in front of people and in front of the camera and I think that she might have learned a little bit from my spirit.
Cook: Jason’s mom keeps saying to us, she says wow, Jason, you’ve touched so many people and I think when she saw like what the film was doing to people then it was like you know she doesn’t mind who her character is or how people are perceiving her as a tough mom.
POV: Well I think she does represent all the mothers who have strength and courage. My mom passed when I was a little girl and my mom always used to tell me, “Don’t tell me what you can’t do because of something, tell me what you can do in spite of it,” and so when I saw the film that was the first thing that I thought. She has that spirit.
POV: It’s like think about all the kids in India. And what a tough time they’re having.
DaSilva: For me it’s still frustrating because that’s not always what you want to hear but at the end of the day, it is what you want to hear.
POV: In the film we see you developing an accessibility app. Can you tell us a little bit about that?
DaSilva: So I went from cane, to walker, to wheelchair, and while I was going through all of that and transforming from able bodied to disabled I realized that I can’t get into this place anymore, it’s got a step or two. Or I can’t get into this place… places that I normally would have had no trouble getting into. Even the subway stairs, for example. All of a sudden I couldn’t take the subway. They were all of a sudden something that was of the past and I couldn’t get in there. So I thought that there has to be a way to let other people know and have other people rate and review places that are wheelchair accessible or even you know good for moms and dads with strollers but for people with canes or walkers, there has to be a way to do this. I got my first iPhone actually in 2009 and had the idea to put it on a mobile app. Let’s put it on a website and create a crowd source tool. That means anybody can contribute to it and anybody can find all the information that they want. So that was AXS Map and hopefully it’s going to live on for generations to come.
POV: And how can people access this app?
DaSilva: So you can go to AxsMap.com, that’s the name of the app. There’s going to be a way for other nonprofit groups to hold little fundraisers for themselves and just go around and hold these events called map-a-thons so you can go around your neighborhood, gather up fifty people or so and just blitz your neighborhood and find all the places that are accessible.
POV: During the making of the film and the development of this app, do you see yourself as an activist as well as a filmmaker?
DaSilva: Now I do. But I didn’t back then. So while I was working on the film I didn’t think of myself as an activist, I was living something. It was only after the film was done, I think it was actually during film festivals, when I saw that so many people are going to benefit from just seeing this story or even using the app that we created. And during the making of the app, I didn’t consider myself an activist, did you?
Cook: In my head, I’ve tried to keep them separate and like for me and the film, the story of the film, we were both very committed to the story and not being activists and telling the story in that…the telling the story was the focus and not getting distracted. But what was interesting is like once we did tell the story it was, it is part of being an activist in that disability stories are so under told and so we realized like getting the disability experience and Jason’s experience on film was so important to so many people just to see themselves and speaking with people with disabilities and multiple sclerosis, they see themselves in the film and we’ve seen tears of joy for them to see their story finally on the screen.
DaSilva: Yeah, but we during the process of making the film the story was the most important thing.
POV: Now what are you working on next?
DaSilva: I’m doing another film, sort of like a follow up film to what is life like after When I Walk so what is life like now. We have a 1 year-old child and as much I like to think it, I didn’t stop getting worse after the film. I continue to get worse. What’s it going to be like having this 1 year-old child grow up as I’m getting worse and growing down, and so that’s kind of like the next film for me. And we’re continuing with the app. What the biggest challenges for the app is getting people to really keep feeding it, because it’s a crowd source tool. There need to be continuous reviews that go in. So one thing I would say is if anybody sees the film, or sees us on the web, just go to AxsMap and start using it.
Cook: That’s true. Our next biggest project is getting the community engaged and getting everyone to use it. To use the app and be involved.
DaSilva: Because it’s powerful but it’s not powerful unless people get out there and start using it.
POV: What would you like a POV audience to walk away from knowing something different once they watch the film? What would you like audience to walk away with?
Cook: For me, the film’s essence and what we hope to capture was the idea that the creative spirit is regenerative and can give you resilience during a really rough period. And I think that’s what we tried to capture and the story which I really think is Jason’s personality and how you’ve been so resilient through all your challanges.
DaSilva: Yeah, I think it’s important to say that one of the major themes is the idea of triumph over tragedy. So regardless, if you have MS, or whatever your challenge is, that there’s some universal thing that the film presents and everybody can relate to it, it’s getting over that hump and getting on with your life or continuing on past that difficult moment.