Jason DaSilva lives in the East Village in New York. He is thirty years old and has Multiple Sclerosis. After working as a filmmaker for ten years, showing at Sundance, on PBS, HBO, and nearly receiving an Academy Award nomination, Jason is currently making a new type of documentary film, When I Walk. Shirin Subhani the co-founder of Courageous Creativity interviewed Jason earlier this year.

Shirin Subhani - Hi Jason, Thanks for talking with Courageous Creativity! Tell us a little bit about your film, “When I Walk”.

Jason DaSilva – “When I Walk” is a point-of-view feature-length documentary about my changed world once I was diagnosed at 25 years old with Multiple Sclerosis. In this film, I explore the societal and medical aspects to having a new disability. It paints a picture of what it is like to live with MS – the ins and outs of the symptoms and the day-to-day challenges faced. When I Walk is a point-of-view feature-length documentary about my changed world once I was diagnosed (at 25-years old) with Multiple Sclerosis in 2005. The film paints a picture of what it is like to live with Multiple Sclerosis – the ins and outs of the symptoms and the day-to-day challenges faced.When I Walk is a point-of-view feature-length documentary about my changed world once I was diagnosed (at 25-years old) with Multiple Sclerosis in 2005. The film paints a picture of what it is like to live with Multiple Sclerosis – the ins and outs of the symptoms and the day-to-day challenges faced.

The name ‘When I Walk’ is about two things – one, about how I am losing the ability to walk and two, I am using it as a metaphor for my life journey. While I am making this film for myself - to come to terms with and process and understand everything that I am going through - my hope is that this film will empower those with disability in society and help lobby for social change. I’ve been working on it for five years now and I think it needs one more year to be completed.

SS – Is that when you were diagnosed with MS, five years back?

JD – I was diagnosed in 2005. I didn’t start making the film then because I thought I could just continue on with my career at the time with no changes. My mentality at the time was to not let the physical troubles that I was having take precedence over the social issues that were important to me.

But then I realized in two years that my medical appointments were taking longer than expected, and so, the best way to continue with my film career was to bring a camera along to all my appointments! I decided I did not need to choose but instead I could creatively merge the two things. Initially, the idea was to start documenting all the medical stuff I was going through; I took my camera everywhere I went. After six months of documenting, I realized that people were giving me a lot of really good feedback about my idea and about the film, so that kind of just fueled my fire and I continued on with the film.

SS – After you were diagnosed with MS and the way you viewed your life changed, how has the definition of ‘being reasonable’ changed for you?

JD – That’s a good question. It has definitely changed. One of the big challenges has been that everything I thought I was as a filmmaker before I got MS has been completely thrown to the wayside. Everything is completely different now. I was this director who was behind the camera; I shot my scenes; I constructed my shots. And now I am the one on camera and have other people taking the shots. Having to deal with the emotion and the psychology, having to watch myself on screen, and having to edit the film has been a unique process; totally unreasonable. At the same time, if it’s giving more power to people, with their own struggles, medical or otherwise, I think it adds a lot of value to it.

SS – The video you have on your blog about the day you got your diagnosis and how it changed your life is very powerful. It made me immediately think of my son’s autism diagnosis and how that day changed my life. Do you view your life in two parts sometimes - before and after diagnosis?

JD – Yes, yes totally. Every once in a while, I look back to my life before diagnosis and I think that everything is the same. It especially happens in my sleep I think. And then I wake up and realize it’s not the same. For me, that’s the hardest part of the day, waking up after a whole night of dreams where I can walk and dance with friends and all of that. I did not know anything about MS before my diagnosis. I mean I had heard of it, but it was only a term. But now, all of a sudden everything I do has to do with this diagnosis.

SS – Where are you from and what got you started with making films?

JD – I was born in Ohio and my parents are from East Africa. My family comes from Goa in India. I began my filmmaking career documenting the contemporary intergenerational South Asian immigrant experience through interview and observation, with my Sundance Film Festival nominated (2003) and Academy Award qualifying (2004) short Olivia’s Puzzle. The film looks at a second generation girl of Goan heritage, born and raised in North America. It cinematically compares her daily life to another girl her same age and nationality – but in the homeland of Goa.

While first-person perspectives of social issues affecting immigrants have been documented in sociological and anthropological text, I believe they have never been given their proper place in film. I have consistently seen the void of media makers from underprivileged immigrant communities and have strived to give voice to those on the periphery.

Over the past ten years, working as an independent documentary filmmaker, qualitative research has informed my work with various immigrant communities. Throughout the process of filming Lest We Forget (http://www.lestweforgetmovie.com), I worked with various South Asian, Arab, and Muslim service agencies to convey the stories of those individuals targeted after 9/11, profound incidents that would otherwise remain untold.

SS – Among the films you made, do you have one that’s your favorite?

JD – Yes, it’s called Twins Of Mankala (http://www.twinsofmankala.com) and it’s short film with the first person perspective of children. It allowed me to work with the UN Millennium Project to develop a qualitative research campaign on sustainable development in Africa.

SS – You also started a non-profit organization called ‘When I Walk Inc.’; can you tell us about that?

JD – Yes, I decided to further my dedication and determination in advocacy for those with disability in 2008, by founding a nonprofit called ‘When I Walk Inc.’ The mission goal of ‘When I Walk Inc.’ is to empower the MS and disability community through the arts, media and technology. The next major project for ‘When I Walk Inc.’ is called AXSmap (pronounced ‘access map’), a suite of tools designed to empower the disability community, providing mapping software so that users can see locations that wheelchair accessible. 

SS – That sounds great Jason; Good Luck with all of the amazing and inspiring things you are working on!