Ady Barkan in “Not Going Quietly” (Promotional still)
Founded in New York City in 2007, the ReelAbilities Film Festival showcases the lives, stories, passions and artistry of people who are disabled. Since 2007, various locations across the United States, Canada and Latin America have hosted the festival. This year, Boston Jewish Film celebrates the 10th anniversary of its partnership with the iconic film festival.
Twelve films and a program of shorts will be shown virtually from May 6-13, opening with a program featuring artist and writer Riva Lehrer. Lehrer will be discussing her vivid and thought-provoking portraits of disability and her acclaimed memoir, “Golem Girl”—a literary reckoning of her challenges as a woman and an artist born with spina bifida.
The six films that were available to JewishBoston.com for pre-screening are powerful and moving, showing disability at its most vulnerable and triumphant. There is rage, sadness, optimism and joy in these films. Although these can be complicated stories, they are ultimately human stories. Audiences are all the better for having the privilege and, thanks to Boston Jewish Film, free access to witness these journeys.
“Not Going Quietly”
Ady Barkan was a 32-year-old social justice activist and lawyer when he was diagnosed with ALS. Rather than debilitating him emotionally, Barkan set out on an extended and emotional campaign for universal health care that put him front and center at rallies across the country, culminating in him testifying to Congress.
Barkan’s mission became all the more urgent after the 2016 election. The timing coincided with his insurance company’s denial to pay for a breathing machine they deemed experimental. It was the catalyst for his extended road trip. Along the way, he brings his case to Republican politicians, asking them to vote against Trump’s proposed tax cuts that aim to slash Medicare and other social programs.
One of the politicians Barkan hopes to convince is Sen. Jeff Flake of Arizona, a potential swing voter. One of Barkan’s aides films his serendipitous encounter with the senator on an airplane. The video went viral as Barkan urged Flake to be a hero. “To Be a Hero” became the tagline of Barkan’s campaign to turn over Congress in the 2018 midterm elections.
Barkan was depleted and his voice gone by the end of the To Be a Hero tour. As he addressed a House committee on Medicare for All, he used an eye-controlled speech generator for the first time. Although having lost his actual voice, he was emboldened to fight on to establish health care as a human right. Answering a representative’s comment that she did not know why the hearing was taking place at all, Barkan asserted, “We are having this hearing to keep people alive.”
“Not Going Quietly” premiered at the 2020 Tribeca Film Festival. As much as the film focuses on the high costs of Barkan’s activism to his health, there is also tremendous joy portrayed in the documentary. Barkan bonds with his toddler son and reads bedtime stories to him, even when he has to switch to his computer-generated voice. He and his wife, Rachael, have a daughter, Willow, as they continue to affirm and cherish life. All the while, Barkan simply demands that people “recognize my humanity.”
Christina Stahl in “Wildflower” (Promotional still)
Matt Smukler’s directorial debut is the affecting story of his niece Christina Stahl. Christina is a high-achieving high school senior who balances homework, sports and a full-time job caring for her parents, who both suffer from brain injuries. Her mother, Sheila, was born with half of her brain missing, and her father, Mike, was not wearing a helmet when he was injured in a motorcycle accident. Sheila has the capacity of an 8-year-old, and Mike’s intellectual disabilities make it difficult for him to navigate the world. This leaves Christina in complete charge of her parents.
“Wildflower” depicts the incredible role reversal in the Stahl household. Smukler documents a situation that is filled with many moments of anger and frustration. Christina does her best to keep the actual squalor of their home at bay, ordering Sheila to clean her room. She doles out an allowance to Sheila to keep her gambling addiction from bankrupting the family. She recounts episodes of homelessness when Mike was unable to keep a job. Her parents’ dependence on her, stunning and frightening, interferes with her plans to go away to college.
Smukler’s camera records Christina’s intense weariness, her inevitable acceptance “that shit is gonna happen.” What little stability there is in the Stahl household comes to an abrupt halt when Christina slips and hits her head. She is in a coma for days and may have a brain injury. The irony is too painful to bear. But as she has done all her life, Christina rallies, and in the film’s coda, we learn she is finally going to college.
Unlike the film “I Am Sam,” about a man with intellectual disabilities who wins a protracted battle for custody of his young daughter, Smukler wisely avoids romanticizing Christina’s life with her parents or pitying her. The story speaks for itself. And in the end, Christina’s words ring true and sweet when she says: “My parents are the source of my strength and independence. I developed resilience, and for that, I am forever grateful.”
“The In-Between”
“The In-Between” (Promotional still)
Jennifer Stone and Mindy Bledsoe star in this drama about two women who are coping with chronic illness. Stone may be known to viewers from the Disney series “Wizards of Waverly Place” and her recent campaign to bring more awareness to her Type 1 diabetes diagnosis. In “The In-Between,” she brings the disease to the forefront as Mads Olsen. Bledsoe, who also wrote and directed the film, does a star turn as Junior Bramley, who has Complex Regional Pain Syndrome Type 2.
Mads and Junior set off on a cross-country trip intending to end the journey with a drive from Portland to Los Angeles. Along the way they make stops in Las Vegas, Salt Lake City and South Dakota for various reasons. A road trip that Junior took with her sister Veronica a decade ago casts a long shadow. Veronica did not survive a car accident, and Junior’s pain over the tragedy is manifested physically and emotionally.
“The In-Between” is also charming as the women share a genuine rapport. Bledsoe and Stone’s performances capture the elusive rhythms of a close friendship. Their banter is witty and underscored by an impressive playlist played in Veronica’s memory. As a director, Bledsoe has a knack for stringing together organic moments and treating her protagonists as fully realized people. The film’s visuals complement Bledsoe’s direction with scenic shots that are impressive but never glossy. To Bledsoe’s credit, the film is not a travelogue, a road movie or a female version of a bromance.
Most important, “The In-Between” is extraordinary for depicting physical disabilities as a natural part of life. So much of what is frequently hidden in chronic illness is front and center in this exceptional film. The only sadness to note here is that its holistic treatment of disabilities is a rare feat.
“Maricarmen”
Maricarmen Graue in “Maricarmen” (Promotional still)
Maricarmen Graue is a talented, versatile cellist who plays in a rock band as well as a chamber orchestra. She is also a music teacher, writer and marathon runner. She lives alone, traversing Mexico City with her cello on her back as she crosses busy streets and navigates public transportation completely blind. Maricarmen’s wit and determination—traits that enable her not merely to cope but to thrive—are beautifully rendered in this moving documentary.
Maricarmen began to lose her eyesight at the age of 3 when she was diagnosed with congenital glaucoma. Over the years, her sight notably deteriorated until it was necessary to remove her eyes surgically. She recalls the last moment of visual clarity in her life without self-pity. It was 1999, and the eye drops that partially restored her vision had stopped working. Maricarmen notes that the medication only provided a limited “grace period” during which she gazed at herself in a mirror, exploring her face and noticing how similar her hands were to her mother’s. To that end, Maricarmen’s mother makes frequent and memorable appearances throughout the documentary. Widowed when Maricarmen was a teenager, she was determined to raise her daughter to be fearless and independent.
On living with blindness, Maricarmen notes: “There are always images inside of me that are in motion. I assign people features. Nothing disappears before you—the world screams to you, ‘Here I am, here I am.’” She observes that her ears are her eyes—close listening is the equivalent of seeing. Her glass eyes are “props” in a world that demands she has them. “[The prosthetic eyes] are my costume, making it weird when people say I have pretty eyes. When I remove them, I feel naked,” she says.
Director Sergio Morkin shoots much of the documentary in diffuse light. There are also moments of blackout that viscerally connect an audience to Maricarmen’s experience. At other moments the light is as stark as an operating room. Maricarmen remembers she was in a hospital bathroom when she saw the last blurry rays she would ever see of light. At that moment, she heard her heart beating and worried that blindness would be terrifying when she was alone. “To this day, one of the hardest things about being blind,” says Maricarmen, “is not knowing if there are people around you.”
“In a Different Key”
“In a Different Key” (Promotional still)
Award-winning journalists Caren Zucker and John Donvan have been working together to tell stories about autism since 2000. They tell these stories to educate and elucidate, as well as to honor Zucker’s son Mickey and Donvan’s brother-in-law—adults who live with autism.
To further investigate their subject, the duo traveled to Mississippi to meet the first person diagnosed with autism, Donald Triplett. In his late 80s, Triplett was a friendly man who wasn’t interested in talking about his autism with them. Triplett still lives on his own in his hometown of Forest. Many of the town’s 5,500 residents know Triplett from his daily walks and visits to the local bank. Their ongoing acceptance, support and protection of him not only enable him to thrive and stay independent but put a fresh spin on the adage that it takes a village.
Triplett was born in 1933. His father was a prominent attorney in town who observed early that his son seemed to be trapped in a shell but had a great memory. Triplett’s mother went against societal norms and refused to institutionalize her son. The Tripletts brought him at age 5 to Dr. Leo Kanner, a noted child psychiatrist at Johns Hopkins Hospital. Kanner was a pioneer in studying children like Donald, whom he observed were intelligent but had “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.”
Kanner published his research in 1943 in a landmark paper, “Autistic Disturbances of Affective Contact.” It was the first time the word “autism” was ascribed to a medical condition. In the paper, Kanner assigned a number to each of the cases in his study, and “Donald T.” was case No. 1. Following Kanner’s diagnosis, the Tripletts sent Donald to public school and oversaw his integration into everyday life in Forest.
Folded into Donald’s story is Mickey’s autism journey and Zucker’s advocacy on behalf of her son. The filmmakers also include depictions of autism on screen. Julie, the first autistic character on “Sesame Street,” has a cameo appearance, as does Dustin Hoffman as Raymond in “Rainman.”
Zucker and Donvan also share difficult facts in the film. They found that 70% of people with autism are unemployed. The suicide rate for adults with autism is double the rate of the typically developing population and it triples for women with autism. Children of color frequently don’t receive an accurate autism diagnosis. In medical settings, Black children’s intelligence is often questioned and “racism is often baked into those clinical spaces.” One mother laments, “I can’t keep my Black autistic son safe.” Lack of equal access to resources continues to trouble the autism community.
Zucker and Donvan are careful to point out that Triplett’s story is the exception rather than the rule. If Triplett had been Black, Forest, which was once segregated, would not have embraced him as a favorite son. Triplett also had the resources to travel all over the world by himself. He also plays golf almost every day and drives. The filmmakers note, “We don’t want to give the impression that everybody’s going to have the situation Donald had because everybody on the spectrum is so different.”
“Scattering CJ”
“Scattering CJ” (Promotional still)
“Scattering CJ” is a poignant story of a mother’s love for a son who died by suicide. CJ Twomey was just 20 years old when he shot himself in front of his house in his car. The air force veteran, who had been arguing with his parents just before he died, had been recently honorably discharged after being passed over for a promotion. Those events left him despondent about his future.
After his death, CJ’s parents “ripped the house apart” looking for a note. There was no note; as his mother, Hallie, reports, there was only his death certificate, which “horribly says ‘gunshot to the head.’” However, for Hallie, CJ’s story could not end with that descriptor. Her son had joined the air force to see the world, and she was determined that he would experience the thrill of travel and adventure posthumously. She put out an initial plea on Facebook “to help CJ see the mountains that he never got to climb, see the vast oceans that he would have loved, see tropical beaches and lands far and away, by scattering his ashes.”
Her request snowballed into an international event. It also became a sacred mission to thousands of people who answered the call to honor CJ. The requests to scatter CJ’s ashes poured in, and Hallie could barely keep up with bundling them into plastic pouches and mailing them. Accepting CJ’s ashes came with two caveats: “You now possess a piece of my CJ,” she wrote. She requested that people record themselves scattering the ashes and telling CJ how much his mother loves him, and his family misses him—and perhaps most important—that his mother was sorry for not recognizing the signs that her son needed help.
These past 10 years, people have scattered CJ’s ashes in love and penance in more than a thousand places around the world. CJ’s ashes are now part of the Great Barrier Reef, the Great Wall of China, the Wailing Wall in Jerusalem, the London Marathon, Mount Kilimanjaro and his beloved Fenway Park. The ashes have traveled to the Egyptian pyramids and the Caribbean. In Fiji, a family scattered his ashes in a river, noting that it would take 20 years for CJ to reach the ocean. “Your journey continues,” they said to the camera. One woman wrote she didn’t have an exotic locale to offer, but she ran a daycare center and could scatter CJ’s ashes in a backyard where, “I can promise you that everyday CJ will be kept company by laughter and smiles and happiness.” CJ’s mother, father and brother were the last to scatter his ashes. To honor his adventurous spirit, they went skydiving and released the rest of CJ in mid-air.
Honoring her son is Hallie’s lifelong mission. She is a mental health advocate who asks that the following statistic be CJ’s legacy: One in four people will experience mental illness in their lifetime. Ninety percent of people who think of suicide can be helped if they are reached in time.
Find ReelAbilities Film Festival screening information here.
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Judy Bolton-Fasman is an arts and culture writer for JewishBoston.com. Her award-winning essays and articles have appeared in The New York Times, The Boston Globe, The Forward, Tablet Magazine, Cognoscenti and other venues. Her memoir, “Asylum: A Memoir of Family Secrets,” was published in 2021.