NSCIA Members in Action: Jason DaSilva

A Big Year for New York Member Jason DaSilva

Jason-DaSilva-when-I-walk
In the wake of his first feature film, New York member Jason DaSilva, 35, has been lauded with superlatives and praise by some of the country’s most heralded voices. Among many favorable reviews for his documentary When I Walk, The New York Times applauded his “uncompromising intelligence” and the Hollywood Reporter cheered his “strength and reliance.”
His movie about his life with MS has won numerous awards at film festivals across the continent, including the Grand Jury Prize at the Los Angeles Asian Pacific Film Festival and the Audience Award at the Vancouver International Film Festival. It was even selected to kickoff PBS’ POV series of documentaries, making its national television debut on June 23.

DaSilva on location.

DaSilva on location.

“It’s definitely been a one-up on everything I’ve done before,” he says.

Yet, perhaps the most meaningful feedback has come from the steady flow of emails and Facebook comments thanking DaSilva for telling his story so candidly. It’s been an enlightening experience for DaSilva.

“I didn’t realize that making yourself vulnerable and putting yourself out there would really help other people confront what they were going through,” he says. “Just by emails that I get, people really feel good about it because they can tell their own stories. Hearing my story makes it more possible for others to tell theirs.”

DaSilva encourages the people who contact him to find outlets for their emotions. “The real thing people can do is be advocates for people with disabilities,” he says.

DaSilva getting married to Alice Cook.

DaSilva getting married to Alice Cook.

DaSilva is not just providing lip service to that idea — he has a long resume as an advocate. He took part in United Spinal’s first-ever Roll on Capitol Hill in 2011 and attended again this year. He filmed an op-ed for the New York Times in January 2013 highlighting the woeful state of public transit in New York City, and he has long-championed AXS Map, a crowd-sourced tool he designed for sharing reviews on the wheelchair accessibility of businesses and places.

“It’s keeping me ludicrously busy,” he says with a laugh. Being that busy would be hard for anyone, but DaSilva’s MS only adds to the challenge. He says he manages thanks to a horde of interns and a solid support group. He also thanked PBS for being very supportive and going above and beyond what was required. Managing all of his projects has shown him many ways he can be more efficient in future endeavors.

Asked what those future endeavors may be, the normally effusive DaSilva grows discreet. “I’m not going to talk about it yet,” he teases. “There’s something in the pipeline, but I can’t say just yet.”

When I Walk is available for free online viewing through PBS until July 23 at www.pbs.org/pov/wheniwalk. To get involved with, or learn more  about AXS Map, visit www.axsmap.com.


UsersFirst: Channel Your Frustration

By Jennifer Wolff

“An activist is someone who cannot help but fight for something. That person is not usually motivated by a need for power, or money, or fame, but in fact driven slightly mad by some injustice, some cruelty, some unfairness … so much so that he or she is compelled by some internal moral engine to act to make it better.”
– Eve Ensler, artist/activist

This image went viral on Facebook.

This image went viral on Facebook.

If you’ve ever wondered what an activist or advocate is, Eve Ensler’s quote is a good place to start. Advocacy can mean pleading for, or supporting, a cause or proposal. For what we do at UsersFirst, advocating means attempting to create change in systems and policies that impact many people.

Anyone who has been denied a wheelchair by insurance, anyone who gets a lesser quality chair or anyone who waits weeks to months for repairs understands how the current policies can be infuriating. You may ask, “But what can I do?” Lots!

Open your mouth and explain your difficulties — to your family, to your health professionals, to community members and to anyone who might get motivated to help you do something. Make your senators and representatives know you by first name — call them, email them, go to town meetings to get one-on-one time with them.

In 2011, I attended Sen. Chuck Grassley’s (R-Iowa) town hall meeting in my city. At meetings like this, senators usually give updates on what they are doing in Washington, D.C., and then there is time for questions and answers. I stuck around until the end and introduced myself as Ms. Wheelchair Iowa 2012. We spoke about complex rehab technology. I told him I hoped to see him in the spring. When I scheduled the Washington, D.C., meeting, he attended in person. Sometimes that personal effort helps — the tiara and sash didn’t hurt either.

Through making an impact with personal contact, you can help your legislators better understand how policies are affecting their constituents (that’s you!). Remember, we vote them in and therefore, technically they work for us.

The key is to bring advocacy down to a more personal and everyday level. Recently we posted a graphic on the UsersFirst Facebook page and it went viral. (See below.) It was simply a powerful action picture of a woman in a wheelchair who was sick and tired of nondisabled people using accessible parking, our bathrooms, etc. We all know there are times when it is appropriate — a person with a less visible disease using a parking spot or a mother with three kids using the big bathroom stall, but how many times do we have to park in a regular parking spot and wonder if we’ll be able to get back into our car when we return because of an inconsiderate driver or someone who parks too closely? This shows the need for advocacy at its rawest.

We all have days when we have just had it. What I urge you to do is use that frustration and turn it into an opportunity for advocacy or an opportunity to educate yourself. Many times people have just not thought through what it is like to not be able to walk. Explain to others how living a life from a wheelchair is different, why changes need to be made, through writing an editorial to your newspaper, leaving disability etiquette signs on vehicles (www.unitedspinal.org/pdf/parkingpad.pdf), getting involved in community groups that can help affect change. There are disability rights groups in every state and many times at the community level too. Consider participating in your state Ms. Wheelchair pageant/leadership and advocacy program to get more attention for your issue. Maybe we need to start a Mr. Wheelchair, too?

Most of all, I hope you ask all your friends, family and health professionals to join UsersFirst. We need to show our leaders in Washington, D.C. that wheelchair users have concerns, we are sharing those concerns with as many people as possible and that together, we have some real voting power too.

Please share your stories with us at www.usersfirst.org, or send them directly to me at jwolff@usersfirst.org. It is important to begin to share those stories with social media (Facebook, Twitter and Instagram), in magazine articles and with our leadership in Washington, D.C. We CAN make positive change in this broken system, but only with YOUR help.Learn more: www.usersfirst.org.

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