Shilpi et Paris

Video #11 shows Shilpi Gupta, a filmmaker who won the Best Short Film Award at Sundance 2004 for her film When the Storm Came.

Back then, she was living in San Francisco, and I met her over email, giving advice on Academy Award qualification in the Short Documentary category, which I did the year before for Olivia’s Puzzle. Soon after, she moved back to NYC. Now, we’re what I consider “old friends”. She considers me as a rigorous producer: working fast and hard, while trying to “push the envelope“.

Now, after getting multiple sclerosis, she doesn’t cut me any slack. In fact, she doesn’t relate to me any differently. She knows I haven’t stopped being who I am, just because it’s harder for me to get around. I’m still the same Jason Dasilva, her friend the filmmaker, doing what he’s always done, the way he’s always done it … maybe a little slower (no more run-and-gun filmmaking for me), maybe with a little more help, maybe with some mechanical supports.

I am lucky that I have good friends who haven’t stopped relating to me as Jason - who don’t treat me as frail or deformed. Get this - for a while in the 90’s, society was searching for language for kids with disabilities, and came up with “differently abled” instead of “disabled.

Society still doesn’t have the language. There’s “normal” or “baseline” and then there’s everything else. We fall back on generic terminology like “brave” and “admire”, but people who know me don’t treat me that way. They don’t treat me a ”special” or “empowering” or as a “poster boy”. When Shilpi says I’m “brave” and "really inspiring", she isn’t trying to ignore who I am by putting me on any pedestal.



That’s why I love being around folks like Shilpi and Kumar Pallana (Video #8) : because they don’t see me as “different”, period. To them, I’m not “disabled” or “differently abled“. I’m just Jason, same as always, and they don’t treat me any differently than before MS-crippled me.

But language is a problem. People don’t know how to say what they want to express about me. Whenever anybody says I’m so “courageous” or “brave” I get this image of myself in shining armor, leaning on my walker as I go out to slay a dragon. I feel like I want to make it into a Monty Python sketch, or an episode of South Park like the one about "Crips and Bloods". I'd be one of the "Crips", of course. (ref: Season 7, Episode 2 "Krazy Kripples") Actually, you may see me doing this in a future video journal entry.

It all has to do with space: sharing my world. When I’m at a film event, in front of a crowd, or even just walking down the street, people say those things. I’m not saying its bad. People may have memories of their own grandmother or their old friend from elementary school who was physically challenged. I may remind them of someone else. But “brave” can also be a disability “buzz-word”: the polarization and opposite of what we call “sad-eyes”, which is the look you can get from well-meaning strangers who are trying to be sympathetic, and it just ends up making you feel pathetic in their eyes, like a lost puppy.

If expressive language is limited here in North America, the Paris of Video #12 reminded me of how almost impossibly difficult society can be on just a simple physical level. I didn’t even see any other “disabled” people around the streets, subways, restaurants, museums … anywhere! No wheelchairs or walkers. Granted, the Parisians were very kind to me. I didn’t get strange looks or feel like a space alien. They went out of their way to be helpful. They never looked down on me. But it’s a little stunning to realize how people like me were not even considered part of society not so long ago … how we were not even expected to participate in daily life.

The trip to France was fully funded by my grandmother. As Leigh said in the blog, she wanted me to go to Lourdes to be cured. Since I’ve always wanted to go to Paris, I felt this was a really good opportunity for me. As for Lourdes: why not? A cure sounds good to me. I did my time as a good Roman Catholic, maybe this is my time. I was willing to take that chance. A video journal is soon to come on this.

Video #12 was also an editing experiment. I wanted to see if I could put in verbal noise: superficial, irrelevant language, and have it not affect the visuals. My intention was to have the images speak for themselves: to see if they could stand out (even juxtapose) against that bland verbal background. I forgot the important lesson of Sergei Eisenstein’s The Battleship Potemkin that whenever you put sound and visual together, you end up with a third image that is a combination of the two. Montage is A + B = C. They don’t stay separated. I’m still glad I tried it, though, and I’m glad you, the viewer participated in my process.

Every front has a back” (ancient Chinese saying)

Videos 9 and 10 are like my emotional front and back.

I've lived seeking new and, importantly unexpected experiences. I guess it runs in my family. For generations, my family has moved from Goa to Karachi to Uganda to Kenya to Florida to Vancouver (mom) and Hawaii (dad). I have visited China, Thailand, France, India, England, Cuba, Scotland, Australia, New Zealand, Fiji, Holland, Puerto Rico, Mexico, Barbados, St. Lucia, Kenya, and St. Maartens….so far!

What do I do with the medical knowledge that all the travel vaccinations I took in order to travel so much has probably contributed to my getting MS? I lived my life. Discovering things I do not know about myself and the world is how I’ve always lived my life.
When I’m feeling normal good about myself, I experience MS as just another part of my life of being surprised and making new discoveries.

But it would be a lie to say that there are days I just don’t want to get out of bed. There are days when my life feels much closer to “The Diving Bell and the Butterfly” than to a young film-maker living on the Lower East Side of Manhattan. All those meetings at Tribeca Film Festival, etc.: everyone telling me how “brave” I am, applauding me - they don’t have to feel the existential loneliness that sometimes creeps in from the other side.
All those beautiful statues, those perfect bodies, that “great” art in video #9. What does any of that have to do with me? At times like these, I feel I’m on the outside of life, looking in.



Then I return. I get together with someone like Kumar Pallana (who has played in Wes Andersen’s films) and we improv in the cab:
I tell him I have MS and he replies: “I don’t care what you had for breakfast…”



Old guys, like Kumar and my great uncle Tio Jose in Video #2 , they know life changes you, messes up who you think you are, takes controls away from you. I love being with them because they know I am still me inside here. They know “normal” is just a social convention. They have lived enough to no longer be distracted by labels like “disability”. They just see me.
My body is dragging my mind into this “elder” wisdom, while my mind drags its feet and keeps yelling “What about our sex, drugs and rock-and-roll phase? ”

Then life interrupts the fun and announces my next stop. The cab door opens and its time to get on with my life.

Video Blog 8

You know - who knwq that my greatest challenge would be the crosswalk?