Amy Silverman’s story of “science, love, and Down Syndrome” is out on Amazon. Silverman, an award-winning journalist, shares her evolution from someone who once used words like “retard” and switched lines at the Safeway to avoid a bagger with special needs to raising a child with Down syndrome. The book is both deeply personal and well researched, with information and insights about how people with Down syndrome are treated in medicine, science and culture. Her book is available on Amazon.
Wisdom From a Chair: Thirty Years of Quadriplegia, by Andrew I. Batavia and Mitchell Batavia
Twelve years after his death, the family of Andrew Batavia discovered his unfinished memoir and completed the work. Batavia shares the wisdom he acquired while living with a high-level spinal cord injury and fighting for the civil rights of people with disabilities. Read more about the book here.
According to Mashable, a woman diagnosed with idiopathic neuropathy is asking J. Crew to sell walking canes. In her petition on Change.org, Liz Jackson writes, “the support of assistive devices should be celebrated. Not stigmatized.” Jackson uses a cane herself and blogs about her experiences, disability issues and more at thegirlwiththepurplecane.com. Read more
Over at the FiveThirtyEight blog, writer Amelia Thomson-Deveaux examines the wage gap and employment issues plaguing disabled Americans, 25 years after the ADA. Deveaux reports that “people with disabilities are twice as likely as other Americans to be poor.” Read more
Filmmaker Jason DaSilva at work in India. From WHEN I WALK.
By LAUREN LOFTUS
In 2006, New York filmmaker Jason DaSilva fell down and needed help standing back up. Five years later, he could no longer walk and needed help accomplishing even the most basic tasks.
But multiple sclerosis didn’t stop DaSilva from turning the camera on himself in this deeply personal and honest film.
“When I Walk” opens with DaSilva falling down while on a family vacation to Saint Martin in December 2006, a few months after being diagnosed with MS. He continued filming over the course of the next several years, documenting his bodily decline while attempting to maintain a career, relationships and, presumably, his will to survive.
Multiple sclerosis is a chronic disease that attacks the central nervous system. DaSilva uses animation to explain his condition, depicting his immune system as deranged Pac-Man-like figures devouring nerve endings in his brain and spinal cord, causing loss of muscle control, balance and vision.
DaSilva circles back to these animated graphics often in the film, using them as markers of life (and disease) milestones. One such marker is a trip to Lourdes, France, at the urging of his grandmother. In the scene, an animation of DaSilva is carried into the sacred baths and he pleads with a statue of the Virgin Mary to be healed.
As his body deteriorates, DaSilva progresses from walking laboriously and slowly to using a cane and walker to eventually relying on a motorized scooter. The film punctuates this progress with time-lapse shots of DaSilva standing (or sitting) still as people, cars and bicyclists whiz by him in a frantic stream of motion. DaSilva employs the use of these small snapshots artfully. In one, the shot is centered on his hands as he attempts to button his shirt, one excruciating button at a time. In another, his wife, Alice, dresses him as he lays face down on the bed.
The theme of inaccessibility flows throughout the film, with DaSilva shown trying to catch a cab from his scooter in New York City and calling several restaurants to find one with accessible bathrooms. His frustration prompted him to create AXS Map (“access map”), a mobile app and website that list the closest accessible businesses in a given area.
DaSilva was an accomplished filmmaker before his diagnoses, with award-winning short- and feature-length titles to his name, and he was determined to continue making films even when he could no longer easily use his hands. In one scene, he asks his wife to help him with some film editing and snaps at her when she’s unable to perform the task quickly. He explains that editing the film has been his “only creative outlet” for several years, but it’s getting harder to do. In one of the last scenes, the pair is working more harmoniously. Alice says they are using her hands and his brain.
While DaSilva portrays himself as stuck in a body that’s becoming progressively less functional in a world that won’t bend to his disabilities, he also displays a fierce urge to hang on to what’s made his life purposeful for so long. “When I Walk” is a product of that determination. It testifies not only to the horrors of a degenerative disease but also to the surprising humanity, passion and art that can spring from it.
“When I Walk” was an official selection of the 2013 Sundance Film Festival. Screenings are currently being held around the country. It is coming to select theaters Oct. 25.
In his blog, National Center for Disability Journalism board member and Arizona State University professor Tim McGuire writes, “When journalists cover disabilities, they need to leave sympathy at the door.” Instead, quality disability coverage stems from empathy.
McGuire examines the difference using Jim Souhan’s recent column in the Minneapolis Star Tribune claiming University of Minnesota football coach Jerry Kill should not be allowed to continue coaching after Kill’s fourth epileptic seizure during a game. Read more.
While building and construction standards under the Americans with Disabilities Act have greatly improved physical accessibility for the disabled community, the technology and education realms still lag behind, according to this column by Kyle Shachmut.
Shachmut, the president of the National Federation of the Blind of Massachusetts, writes about his personal experiences, as both student and teacher, navigating the world of higher education as a blind person. He calls for an initiative that would prompt technology manufacturers and purveyors of education to create equal access to digital curriculum for disabled students as society moves ever more into a digital world. Read more.
May 29, 2013, is the 23rd anniversary of the Americans with Disabilities Act. To celebrate, the U.S. Census Bureau has released a “Facts for Features” document that breaks down disability information from the 2010 U.S. Census into easily digestible nuggets perfect for journalists working on stories related to disability.
Some highlights include that 56.7 million people in the United States lived with a disability, that West Virginia had the highest percentage of people with non-institutionalized disabilities and that 23 percent of people with a disability lived in poverty.
Tremendous advances have been made in the medical field within the past decade, thus making it easier for those who lose limbs either in war or for another reason to regain their physical abilities. James Dao talks with veterans who have lost limbs in various wars, as well as experts and others who emphasized the importance of adaptive sports and other support systems to help those with injuries.
On Friday, March 22, NPR and Planet Money started a one-week series of stories on the growing number of people with disablities and therefore are unable to work. You can find a link to the main story above along with the first installment of a radio piece by Chana Joffe-Walt as heard on All Things Considered here.
Joffe-Walt helps explain the potential reasons why an increasing number people are considered by the government to be too disabled to work, both through statistics and various charts, as well as through the stories of people she met throughout the country while reporting.
A primary question in the first radio story was: why, with the labor market becoming increasingly technology-based – and thus, less physically demanding overall – are there still so many people being added to “the 14 million Americans who are invisible to the economy?”
If you’re in the Phoenix area, Paul Bendix will be giving a reading from his collection of essays offering a perspective of his life with a disability, Dance without Steps, at Changing Hands Bookstore in Tempe on Wednesday, May 23 at 7 p.m.
“In his recipe for Pea Soup à la Quadriplegia, Paul Bendix advises to crush garlic with your wheelchair tires and cut up carrots with your teeth. So begins his offbeat and frequently humorous account of life with paralysis. Mugged and shot in the spinal cord at age 21, Bendix recounts working at jobs with one unfeeling hand, wheelchair journeys through suburbia, and perils of taking a shower in France. He looks straight at the hand he’s been dealt and the fierce complexities that have come with it.”