Video Blog #17 is kind of like a super condensed version of my life since being diagnosed with Ms in 2005. Normal inconveniences, like the elevator being out of order, have become transformed into time-consuming and exhausting obstacles. If you can imagine living the fast-paced NYC life with your shoe-laces tied together and your legs encased in heavy molasses, then you have a small idea of the physical strength and intense concentration it takes to navigate the city and keep schedules. That scene with the disabled elevator was not a set-up for this blog. That was just what was happening that day in my life as I set out for the Tribeca Film Festival. It was just a “normal” day. I’m now preparing to move to a first floor apartment, because that “normal” and my “normal” don’t fit together, anymore.
And then there’s this third “reality” of the film world, where everyone is intense and beautiful and smiling. So, in this blog, my body isn’t working right and the elevator isn’t working right, and suddenly here I am in the film world where everything works out right by the end of the story, and there’s almost always a “happy ending”. I’m standing on the “red carpet” with all the photographers calling out: “Jason, Jason! Look here!” and I’m smiling and nobody has any idea what it takes for me to get there.
Tribeca Film Festival was started by Robert DeNiro to rejuvenate the spirit, culture and economy of lower Manhattan after the attack on the Twin Towers. The speed of its schedule is crazy. Living in NYC is difficult enough for its speed , but Tribeca is so much worse.
So I’m standing there with my walker. A Tribeca publicity person announces: “This is Jason Dasilva. He’s one of our film-makers.” and the flashbulbs start popping. That’s what the press does. They just shoot anybody on the red carpet. I stood there with my biggest “in your face” smile. I didn’t care about the “red carpet”, personally. I just didn’t want to be discriminated against in any form. I was insisting on being seen like anybody else. I went in front of those cameras to get a picture for my camera. How often do you see someone with a walker in front of a whole bunch of press? Smiling like a fool.
So, the “red carpet” scene is meant to be ironic, because in reality, I don’t want When I Walk to just be me showing myself for the camera. I want people to have a deeper insight into what I’m dealing with and what I’m feeling. That’s the exact opposite of standing on the “red carpet”.
I don’t mind being criticized as an artist, but I don’t want anyone to put a “frame” around me. Being framed as either “brave” or as “disabled/not normal” … both of those frames deny who I am as an individual human being. At some point for almost everyone, life takes away one of the important ways we define ourselves. For an athlete, it could be that day when he or she can no longer compete. For someone else today, it could be unemployment, not being able to provide security, becoming dependent. For another person it may be divorce or an addiction that takes control of you, or another disease like cancer or Parkinson's. Its not just an MS problem. Its the problem of who we are and how we live when our personal frames are broken.
My brother Leigh shot this footage. I think this is really good. The blog is running a little slow because Leigh is involved in getting Canadian funding. And Miguel Valldes is involved in logging all the tapes and putting together an assemblage that we can begin to transform into a rough cut.
And I’ve just become involved with MCCANN Worldgroup (http://www.mccann.com/) to create a database of worldwide (NYCto start) handicap accessible sites that disabled business travelers and tourists can access on their smart phones and I-Pods as they move out into the world. Because making us visible and opening routes for us to participate in “normal” life is more than just this one film. It is what WhenIWalk, Inc is all about.