St. Mark’s Street Callout

Originally posted on November 27, 2009

On a sunny November 2009 day, my friend Suri and I hit the East Village with our scooters to see about accessibility and how far and wide reaching it can get. Of course, it’s not all sunshine when it comes to accessibility. But this comes as no surprise for me (or her) since I have been carting through the East Village with my walker for some time now. I can easily spot which places I’ll be a getting into, which places I won’t be able to get into, or which places I’ll need a hand to get out the initial step or two.

Hold on, let me back up.

This is the first blog that you’ve seen me in a scooter. I’ve had it for about three weeks now, but really I should have been having one about a year ago. What a scooter does is that it opens the world up for me in ways that were not available before. I didn’t realize it, but I had been seeing the world outside the window of a car or a cab for approximately 3 years now. Well, not all the time. I was sometimes pushed in a wheelchair, which was difficult to deal with. Not only did I have to steer away from looking at my reflection in a passing window or mirror, but I was out of my control, in the hands of my wheelchair-pusher. Here I was, after years, no longer able to navigate for myself. Soooo… I would rather see the world from a window of a cab then be out of my own control. The cab fares were getting hefty, sometimes costing up to $20 a day. When I put the rental costs of the scooter up against this, I decided that it was about time.

Anyways, Suri and I went down Second Avenue towards St. Mark’s Street. I do have to admit it was a little bit of a setup – I knew that St. Mark’s wasn’t accessible, but that’s not enough reason why it shouldn’t be! Sure, it’s an old street, but really, get with the times. So we went scooter anarchy on its ass.

Do What You Gotta Do

Originally posted April 2009:

Video Blog #17 is kind of like a super condensed version of my life up to 2009 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.

Paris, Je t'aime, sometimes

The images of Paris remind 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.

It’s a spoon or it’s a fork?

As an undergrad my degree was in performance art, so, on an creative-intellectual level, I wanted to play with the ideas Warhol expressed about endurance with films like “Sleep“, “Empire“, and “Don’t Blink”.

How much endurance does the viewer have to just sit there while I do something so mundane and emotionally insignificant?
I am gratified that viewers have responded to this mundane activity, “getting a fork”, in extremely emotional ways, because of its human context in my life, in my body. This is actually how long things take me.

Diseases like MS mean you turn upside-down that glib “Don’t sweat the small stuff…”

With MS “it all becomes big stuff.” Every day is going to work. You don’t get to take a day off. Living a life where nothing can be taken for granted is a lot different than just “knowing“ it. Its like you “know” there’s gravity, but you’re not really aware of living with it. Gravity becomes a lot more real with MS.

MS is like Zen without the promise of “satori”. To paraphrase the basic tenet: Chop wood. Carry body.

If MS was going to make me so aware of the “present moment” that I’d reach “nirvana”, at least there‘d be an upside to getting it.
But this ain’t your “walking meditation”. This is my life

What happened to disability rights?

A few years ago, I started using a power scooter. All of a sudden, my world became much smaller. I could only get into a handful of places that I used to get into. Traveling from Brooklyn to Manhattan has become taxing it near impossible. I created an Op-Doc the New York Times website. 

I am getting more and more frustrated as I have come to see that people, often those in positions of power, don’t view disability with the same civil rights and freedom as other movements. It’s a deep dark secret. This is how the disenfranchisement of the disability rights struggle occurred and continues to occur.

Honestly, I think it exhausting that this is the case!

My thoughts on getting around New York

I love New York. When I was younger, the city was my playground. You could find me on any given weekend catching brunch with a friend at a cafe, going to an East Village restaurant for dinner and then hopping the subway to a nightclub in Chelsea. But at age 25, nine years ago, I was told I had multiple sclerosis, and I saw my freedoms slowly vanish. I grew up quickly, learning to plan daily activities with precise schedules and strategies for getting from one place to another, while trying to maintain some semblance of the life I’d enjoyed. It’s not M.S. that exhausts me, it’s the barriers that prevent me from conducting my daily activities. Public-transportation challenges have turned my playground into a sand pit.

While New York prides itself on being forward-thinking, I’m surprised that it lags behind other cities in accommodating its disabled population. I’ve traveled to London, Vancouver, Toronto, San Francisco and Washington, and basked in their accessibility options. Ramps! Wheelchair taxis! Accessible trains! Fully accessible buildings! Oh, the luxury! Then, back to New York, where, although public buses are accessible, most transportation for me ranges from difficult (like the East River Ferry, which runs at different intervals, depending on the time of day) to feeling as if we’re in the Dark Ages. Of course, upgrading facilities or taxis is expensive, and change takes time, but the question is, how much time? How long do we have to wait? People with disabilities should enjoy the freedoms that everyone in society deserves. This is a human rights issue.

This Op-Docs video really just looks at New York’s transportation issues. I’ve been working on finding solutions to the larger, overwhelming issue of inaccessibility and building design. In response, I’ve created AXS Map, a crowd-sourced accessibility map that gives freedom to people with mobility challenges, their friends, family and supporters. I hope it’s a small contribution to the community I am now a part of, and helps make New York a little bit easier for us to live in.

Superman and Kryptonite

Everyone in the MS community agrees that it is essential to maintain a “positive attitude”. It is exhausting to have to be so conscious of literally every step I take, every pill I have to take, the daily exercise I have to do to compensate for and try to delay the inevitable deterioration … so, when any negativity seeps in, the burden becomes that much heavier and I feel like I move even slower. It is as if my already damaged circuits become clogged by negative emotions, negative energy. Brendan, Susan, Shilpi, many others … all my friends not only understand this but also feel this.

But how does anyone have a “normal” relationship without negative emotions? How can I have a lasting friendship or lover if my friends and I have to always be on guard against expressing frustration or simply just “waking up on the wrong side of the bed”. Plus, I’m an artist. I always expected I would have a full palette of emotional colors to work with throughout my life.

Remember, I used the ancient Chinese saying: “Every front has a back.” If my friends and I are “brave” because we continue to work and love and function in relation to my internal identity, my essential wholeness, then we are also cowards who live in fear of exposing me to feelings of sadness, loss, helplessness, frustration, the way Superman feared being exposed to Kryptonite.

Here, let me give you a personal example: in my teens and 20′s I was taller than average. Check this – if you study psychology you know that 90% of leaders (generals, C.E.O.’s, movie stars) are taller than average. There is a lot of psychological privilege that goes with that common phrase: “people look up to you.”

Now, I get wheeled into a room in a wheelchair where everyone standing is taller than me. It almost feels humiliating. You can criticize me for being vain. But I don’t want to live the life of the Dalai Lama (who is tall, by the way). I want to live my life, and my life is that of a 30 year old film-maker living in NYC and traveling around the world, not a Buddhist monk contemplating the brief light of each individual life.

I hear the vast majority (over 70%?) of people with MS live solitary lives. It is not just that my lifespan has been shortened. It is that I do not want to live the rest of my life alone! I want to touch and be touched. I want to be able to laugh and cry, feel joy and frustration, without worrying what effect my strong emotions will have on my unstable nervous system. I don’t want my friends to have to carry the burden of always being positive. I just want to be Jason again.

What do you think ? Do you ever get these feelings?

Twins of Mankala

I did what I could until the very end.
(Shit! That just came out! What is THAT supposed to mean? I‘ll get back to it at the end of this Blog).

I was 25 years old. You’re not supposed to stop. I just took the money I made from Song for Daniel and bounced it into another film. I wanted to go to Africa before my symptoms got any worse. I knew I was “playing tag” with Fate , but I didn’t want to pay attention to my MS because there’s no medical treatment for Primary Progressive, anyway. My despair moment didn’t happen until 3 years later.

So, here I am, over in Kenya in the middle of nowhere. This is a lot worse than getting around Long Island in a New York summer. My mom and brother came with me. They had my back. I couldn’t have done it without them. I remember the bus to take me to the village breaking down and having to walk. By the end of the day my legs couldn’t support me to walk back home, so I had to rent a bike. There was no electricity or running water, so keeping cool was another big issue. I’m really glad I went, but it was definitely not easy to do.

In the back of my mind, I was aware of the death of spontaneity in my life , of my “run-and-gun” philosophy of documentary film-making. I had always defined myself as a photo-journalist, rather than a film-maker, spontaneously recording what I encountered.

I still don’t get it. I found this film to be the one film I shot the best: the composition, the colors, the visual style … everything was perfect. I don’t know what the reason was. Imagine looking through the camera with MS. My vision was really blurry and faces, scenes looked fuzzy.

But when I got the film back from lab it was just what I wanted. It really helped my confidence in my creativity. I was simultaneously losing my sight and gaining confidence in my vision. This was the first film where I used a tripod. I was forced to use “sticks” because I couldn’t hold the camera anymore. The gift in this is that each shot was perfectly framed.

I did this film really fast. Everything I did was “seat of the pants”, back then. If I tried to do it now I couldn’t. My premonition about this being my “last chance” was almost true. I was only able to shoot one more, a post-Katrina film with a human jazz theme: “From the Mouthpiece on Back”. I’ve got to give “props” to PBS for buying these films. If they hadn’t, I would have gone broke and probably wouldn’t be a film-maker today.

I realize now there’s been a benefit. Getting MS forced me to focus, be controlled. Its something most film-makers go thru, part of working on bigger budget films. And it is what most folks go through as they age out of their “immortal 20’s” and slowly grow into themselves. There’s no more drinking, now. I still go to clubs, but not all night long. I’m conscious and careful about how I use my energy, and make choices to not waste it. There’s this old Ringo Starr song with a chorus: “No, no, no, no, I don’t do that no more. I’m tired of waking up on the floor….” It’s a cute song, but waking up with MS is not the same as waking up with one more lousy hang-over.

A friend who is 65 imagines its like going from being 25 to being a not-so-healthy 75 in five years. Maybe that’s right. With my rapid loss of vision and mobility and no medical treatments and no periods of remission with Primary Progressive, its hard to keep in mind the statistics:

In 1936, only 8% of patients were reported to survive beyond 20 years after onset of illness
In 1961, over 80% of Multiple Sclerosis patients were reported surviving to 20 years after onset of illness
2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years (mean life expectancy – 7 years)

And that “Apart from a minority of people with “aggressive” multiple sclerosis, life expectancy is not greatly affected, and the disease course is often of more than 30 years’ duration.”

Does 30 years sound like a long time to you? Hell, yeah, if you’re 75.

But I promised in the beginning to say something more about that loaded opening sentence:
“I did what I could until the very end.”

When I finally entered my period of despair, one of the things I had to mourn, besides my new relationship with mortality, was the loss of my “run-and-gun” creative style. I even used to prefer working with real film, not digital images … that’s how physically intimate the experience was for me.

Now I am dependent on others to do the camera-work. I have lost the physical intimacy that my documentary style held for me. I have had to learn that my creativity and my vision transcends this physical connection. This goes along with my new sense of what it means to make “choices” and a new feeling of the power of being “focused”.

I know this is all good, but I sure would like to take a “day-off” once in a while, and just let it all hang-out once again … even if I had a really bad hang-over in the morning.

A Song For Daniel

This was my third film. It is also the second one picked up by TV.
It was in finished in 2005. It was my response to the invasion of Iraq. A friend of mine shot the Iraqi part of the film when she went to visit her husband who was working at the Turkish Embassy.

It is typical of my personal theme of identity and questioning the significance of cultural differences and their effect on a common sense of humanity. This relates to my own sense of identity as a young man of obvious East Indian appearance growing up first in Florida ( Cuban? mulatto?) and then Vancouver, with a mother born in Kenya and a father born in Uganda and family ties going back to Goa, itself a mixed Hindu-Tamil-Portuguese culture.

Naturally, because of the war, the boy from Long Island didn’t want to identify with Iraq. He wanted to be 100% American. I felt a real empathy with him and his desire to appear “normal”, to assimilate. Now that I have MS I find that I am still exploring that same boundary between acceptance and “otherness”, between “normal” and “outsider”. It is interesting to step back and observe how consistent my work is, and how much my artistic questions have been shaped by my personal experience.

Over the course of making this film I was getting MS symptoms. I remember a hot summer. I would have trouble walking down the street, seeing through the camera lens. I needed to rest a lot, but I refused to pay any attention to those difficulties. I knew something was up but I kept brushing it off. I didn’t think it was that big a deal. I was 25. I still thought I was immortal.

I completed the film and then was diagnosed while trying to distribute it. I remember recovering from a spinal tap and getting calls from HBO and PBS bidding on the film, while I had terrible headaches and nausea. A Song for Daniel was accepted to be shown at the Tribeca Film Festival. I was floating on a cloud with my success in the film industry and never wanted to stop to deal with MS.

I remember taking a subway to be interviewed at PBS/POV after they bought this film. After a spinal tap, you are supposed to stay lying down for a few days, and here I was riding a crowded train, vomiting in the station, being interviewed with a throbbing headache, throwing up afterwards in the PBS elevator, and again on the street … lying horizontally in the cab home, only to be caught in the traffic of the St. Patrick’s Day parade. I ended up having to walk from 2nd Avenue across Manhattan to 8th Avenue (about 1 ½ miles) to finally get to lie down and rest. I stayed down for two days straight.

I kept trying to hide my symptoms . I wanted to concentrate on making a difference in people’s lives. Mom forced me to look at it. I was still acting like I didn’t care: working on the film, going out with as many girls as possible. Parties. Lots of drinking.

And now? Well, I’m still having fun. But then the fun was more physical: dancing, dating. What I miss now is just walking down the street. Damn, on a day like today, if I was ok today I would just be wandering around, exploring different parts of the city: interesting places, hidden or unnoticed places, places that provided insights and new perspectives … And trying to make eye contact with good looking girls, not so easy now when I’m looking up from my wheelchair! I am impatient to get a power chair, so I can not feel so limited to a few city blocks, but even then I’d still be looking up at faces. I suppose there will always be this background sense of frustration, no matter how many mechanical upgrades I get.