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A Father’s Boundless Love for his Son Leads to Film Exposing Cracks Within U.S. Medicaid System

Watch When We Walk with Human Rights Watch Film Club on Jan. 25, 2020

UPDATE: Los Angeles, Jan. 23, 2020 – A special screening of When We Walk, followed by a Q&A and panel discussion, will occur on Sunday, Jan. 26 in Santa Monica, California. All attendees are invited to stay after the screening for a Q&A followed by a cocktail reception with Human Rights Watch Disability Rights Division Senior Researcher & Advocate Carlos Ríos-Espinosa and Award-Winning Actor, Model, and RespectAbility’s Hollywood Inclusionist Tatiana Lee, moderated by Disability Rights Activist, Vix Jensen. The screening is presented by the Human Rights Watch Film Club in partnership with the Motion Picture & Television Fund, Media Access Awards, and RespectAbility. To purchase tickets, please follow the link: https://hrwwhenwewalk.bpt.me.

New York City, June 13, 2019 – In his latest documentary, When We Walk, award-winning producer Jason DaSilva captures his personal life living with multiple sclerosis, from the toll it takes on his marriage to the challenges in accessing adequate medical care through the U.S. Medicaid system. This documentary feature will premiere in New York City at the Human Rights Watch Film Festival on June 14 and 18.

When We Walk is DaSilva’s sequel to his masterpiece, When I Walk, which detailed his multiple sclerosis diagnosis, with his wife, Alice, by his side. This documentary premiered at the 2013 Sundance Film Festival and won Best Canadian Feature at the Hot Docs in 2013 and an Emmy Award in 2015.

DaSilva is a skilled documentarian, exposing his vulnerabilities about his disability, his marriage and his quest for care through Medicaid. DaSilva’s wife, who has become exhausted from caregiving, moves with their son 2,000 miles away to Austin, Texas. About half of all relationships in which one person has a disability ends in divorce, DaSilva notes in When We Walk.

Texas has one of the worst Medicaid systems within the United States. Ultimately, DaSilva is forced to choose between living close to his son in Texas but losing his independence and ability to create films, or remaining in New York City where he has access to a large network of services and independence but away from his son. This spurs DaSilva to uncover the large-scale cracks within the Medicaid system throughout the entire country.

“These basic support services for people with disabilities are a human right,” DaSilva says in the film.

DaSilva’s motivation for When We Walk is for his four-year-old son, Jase, to witness his intense desire to be with him and the complications in his way.

“It makes me sad to think about what I’m going to be like when you get older,” DaSilva says to his son in the film. “And it makes me sad that you wouldn’t really know me as somebody who can get out and do things with you. But in a way making this film is the way that I can show you what I was like and talk to you about the challenges.”

When We Walk will be one of 13 films offering fresh perspectives and critical insights on human rights concerns impacting people around the world at the Human Rights Watch Film Festival New York this week. Both When We Walk and Everything Must Fall will be fully subtitled in English, with closed captioning, and CART (live transcription) for the post-screening discussions. The goal of the festival is to raise awareness and generate action around important societal issues, including the health care crisis in America that is portrayed in When We Walk.

Additional research and reporting provided by RespectAbility Communications Fellow Sarah Meehan.

Meet the Author

Lauren Appelbaum

Lauren Appelbaum is the VP, Communications and Entertainment & News Media, of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities so all people with disabilities can fully participate in every aspect of community. As an individual with an acquired nonvisible disability – Reflex Sympathetic Dystrophy – she works at the intersection of disability, employment, Hollywood and politics. She regularly conducts trainings on the why and how to be more inclusive and accessible for entertainment executives throughout the industry. Appelbaum partners with studios, production companies and writers’ rooms to create equitable and accessible opportunities to increase the number of people with lived disability experience throughout the overall story-telling process. These initiatives increase diverse and authentic representation of disabled people on screen, leading to systemic change in how society views and values people with disabilities. She has consulted on more than 100 TV episodes and films with A&E, Bunim-Murray Productions, NBCUniversal, Netflix, ViacomCBS, and The Walt Disney Company, among others. She represents RespectAbility on the CAA Full Story Initiative Advisory Council, Disney+ Content Advisory Council, MTV Entertainment Group Culture Code and Sundance Institute’s Allied Organization Initiative. She is the author of The Hollywood Disability Inclusion Toolkit and the creator of an innovative Lab Program for entertainment professionals with disabilities working in development, production and post-production. She is a recipient of the 2020 Roddenberry Foundation Impact Award for this Lab. To reach her, email [email protected]

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