I had been working as an artist and filmmaker for ten years when I noticed I was having trouble walking up and down the subway stairs. I started to walk criss-crossed. My vision started to get blurry. I went for a check-up with my doctor and at age 25, in 2005, I was diagnosed with primary progressive multiple sclerosis, an incurable and untreatable form of the disease. I decided to turn the camera on myself and tell my story. After 8 years of filming and going from a cane to a walker to a wheel chair, I completed my first feature film called “When I Walk”(www.wheniwalk.com). The film premiered at the Sundance Film Festival, was broadcasted by PBS/POV and won an Emmy for Long-Form Documentary last year. The film was successful beyond my wildest dreams.
During the film, I developed a website and a mobile app called AXS Map (www.axsmap.com), which allows users to rate and review venues on their wheelchair accessibility and disability friendliness . This is my first excursion into the world of digital technology arts. The project is going strong, being used in over one hundred countries. We are also partnering with the U.N. to rate schools in developing nations such as India, Uganda and Brazil, on their wheel chair accessibility. This project has grown exponentially.
Right now, I am undergoing some major changes to my physical self.
Over the last year, I have lost the ability to use my hands to type on the keyboard. I require the assistance of others to type my thoughts. Practically, I have others sit beside me. The experience of this combined with my continued vision and upper body coordination loss, has put me in a state of frustration turned patience. I know that very few have this experience in there own lives. In addition to being paralyzed from the neck down, my voice is now weak and I’m legally blind, my eyesight blurred in a way that is uncorrectable by any form of glasses, contacts or surgery. In just the past six months, I’ve lost one of the last capabilities I had for my independent functioning: the use of my fingers. One of the last things I could do was to direct my motorized wheelchair; now I can’t even do that. When I was first diagnosed with MS, I never thought that this would be me.
Having made the transition from able-bodied to disabled, I know first hand that many people do not think about the experience of disabled people in society. This gives me inspiration and fuel to keep going and tell my story so that others can join in the challenge to have our voices be heard.
When I first got diagnosed with multiple sclerosis, it seemed like an extra tag that I could easily add to my already voluminous diverse identity - an ethnic heritage that spans India, Portugal, Kenya, Canada, Catholic and Hindu. My overwhelming ethnic individuality separated me from the crowd and spurred my fascination with identity, led to the themes explored in my first films: ethnic identity, immigrant lifestyles, and the movement of people between new and unknown places.
My most recent film, “When I Walk,” (www.wheniwalk.com) is an exploration of how that ‘extra tag’ I was so sure I could incorporate into my life instead changed my identity in ways I had never imagined. Ten years after starting ‘When I Walk,’ I’m now a quadriplegic. I no longer feel anything “special” about multiple sclerosis, and I wish to God that it’d just go away and leave me the way I was before.
People don’t know, nobody really asks, and rarely do people get the chance to tell anyone what this is really like. So if I’m stuck with this body and my unfortunate circumstances, then I’m going to tell the world about it. I can’t take the subway, because my stop on the 7 line has no elevator and obviously I, along with every other wheel-chair-bound New Yorker, cannot climb its two dozen concrete stairs.
Although I’m an accomplished 37-year-old Emmy Award winning filmmaker, I live on food stamps and subsidized housing. Why? Because if I have any income at all, I will lose the Social Security Income Disability and Medicare and Medicaid on which my 24-hour-a-day care depends. The New York Times recently referred to this as the “disability trap.” And it exists because we don’t have a sane nor equitable form of insurance or universal health care that would allow me to continue to earn a living as well as getting the assistance I require, such as the around the clock care aides that come to my house each day. As a person with a severe disability, I have to rely on what I can get. It’s a matter of survival. Does it have to be this way? Apparently. But, can I keep doing the things I love to do? Absolutely.
I am including this in my new film “When We Walk”, and it tells the story of how I must grow up. This film is the follow-up to “When I Walk” and documents me facing that I am no longer the young and overzealous filmmaker I once was. Now, I am confronted by my life. These days, I am working out of my apartment in Long Island City. I work alone or with assistants who help me with any filmmaking tasks such as writing, editing, and animation.
Whatever the case, I communicate with my three and a half year old son, Jase on Skype daily. I want to show him and share the resilience I have and teach him that he needs to be strong in everything he does. I want to share with him his father who is an artist and filmmaker and everything I am and my friends and family in case he never meets them.