Jason DaSilva’s “The Disability Trap” is beautiful and infuriating

The acclaimed documentary filmmaker and New Mobility’s 2014 Person of the Year, Jason DaSilva, just released a powerful new documentary in collaboration with The New York Times.

By Seth McBride, New Mobility August 20, 2018

The Disability Trap explores the Medicaid insurance system and how state-to-state disparities can limit freedom of movement for people with disabilities.

It is an intensely personal story. DaSilva, who has primary progressive multiple sclerosis, relies on New York Medicaid to fund the 24/7 attendant care that allows him to live independently. Recently, he and his wife got a divorce, and she relocated to Austin, Texas, with their young son. The film follows DaSilva’s ultimately-failed attempt to secure similar services in Texas so that he could co-parent his son while maintaining his livelihood.

Under the Texas Medicaid system, DaSilva finds that the only way he would be able to obtain 24/7 care is by living in a nursing home. He’s faced with a choice that no parent should ever have to make. “Living at home allows me to pursue my dreams – my filmmaking, my non-profit, and being a voice for people with disabilities. Losing this independence would be the end of my filmmaking, the end of my activism and the end of me. But losing my son has made the past year and a half impossible,” DaSilva says.

All of this is because of the state-to-state variance in how well Medicaid is funded and, in turn, what is covered. “The disparity amounts to institutionalized discrimination against aging and disabled people, and it prevents me from truly having a choice about where I can live,” he concludes.

It’s a heart-wrenching, powerful and infuriating story, one that shines a glaring light on the impact of the way America administers essential health services for those who most need them. The Disability Trap should be required viewing for every politician in the country.

How Health Care Makes Disability a Trap | Op-Docs. “America is a place where people have freedom to move where they want,” says filmmaker Jason DaSilva “At least that’s how it’s supposed to be.” But as DaSilva shows in his new Op-Doc, “Mapping the Disability Trap,” the way healthcare works in the United States can end up denying people with disabilities that freedom.

The film follows DaSilva on a spirited investigation of a maddening Catch-22 that prevents him from moving to another state to be closer to his son — and still get the care that his multiple sclerosis requires. In a sense the film is a heartbreaking expansion of DaSilva’s previous Op-Doc, “The Long Wait,” which showed in excruciating (and humorous) detail how hard it is to get around New York City in a wheelchair. The New York times. Youtube Jul 29, 2018

Source New Mobility

 

WHEN I WALK Official Trailer. In 2006, 25-year-old Jason DaSilva was on vacation at the beach with family when, suddenly, he fell down. He couldn’t get back up. His legs had stopped working; his disease could no longer be ignored. Just a few months earlier doctors had told him that he had multiple sclerosis, which could lead to loss of vision and muscle control, as well as a myriad of other complications. Jason tried exercise to help cope, but the problem only worsened. After his dispiriting fall on the beach, he turned to his Mom, who reminded him that, despite his disease, he was still a fortunate kid who had the opportunity to pursue the things he loved most: art and filmmaking. Jason picked up the camera, turned it on his declining body, and set out on a worldwide journey in search of healing, self-discovery, and love. Jason DaSilva. Youtube Sep 19, 2013

The Long Wait: A Disabled Filmmaker’s Unique Experiment in NYC | Op-Docs | The New York Times. The filmmaker Jason DaSilva reveals the challenges for the disabled in navigating New York City’s public transportation system. The New York Times. Youtube Jan 19, 2013

Also see
The Disability Trap The New York Times
The Long Wait The New York Times