By Cathy Shufro
The film Rolling might have turned out to be “Gimp 101”–video sequences showing people in wheelchairs washing dishes, transferring to the driver’s seat, wheeling down sidewalks.
When she began work on the film, producer Dr. Gretchen Berland didn’t know what to expect. Although she’d made documentaries for public television before attending medical school, this time she took a very different approach. Instead of planning what to film and then hiring a camera crew to shoot it, she simply gave cameras to her subjects–three Los Angeles-area residents who used wheelchairs–and waited to see what would emerge. “I had no idea what those three people would film,” recalls Berland.
At first, Galen Buckwalter, Vicki Elman and Ernie Wallengren filmed activities of daily living, more or less. “Then, over time, something extraordinary happened,” says Berland. “They began to film more than the processes of care. They began to film stories of their lives.” Over the course of almost two years, the three recorded 212 hours of tape. From that raw material, Berland and her co-director, Rhode Island film editor Michael Majoros, crafted a 71-minute documentary. The result is a film, says Berland, that “makes the invisible visible.”
Rolling won the top award for documentaries at the Independent Film Project competition for works in progress, held in New York City last fall, and in February, the film was screened at New York’s Lincoln Center. That night, Milton Tabott of the Independent Film Project praised Rolling for contributing to a long tradition of using documentary film for advocacy.
Yet Berland did not begin the project with advocacy in mind. She resisted setting an agenda for the film. Instead, she saw filming as a way of doing research, as a vehicle for giving physicians and policymakers insight into the largely hidden lives of wheelchair users. She avoided intruding her own biases, asking Buckwalter, Elman and Wallengren to decide for themselves what to record. “When you give the camera to someone else, it really shifts the power,” she says. “It’s much more really, truly, a process of discovery for both subject and researcher.”
Elman says that watching the footage she shot showed her the magnitude of the obstacles she faces living independently with multiple sclerosis. “I stopped and thought about how much I needed other people,” says Elman, who is 53. She has lobbied for a bill in California that would help subsidize home care for middle-class people, and she thinks legislators might be more sympathetic if they saw the film.
For Wallengren, a television writer and producer with credits including The Waltons, The Promised Land and Baywatch, the project served as an extension of the work he’d left behind after being diagnosed with ALS. “It kept him active and doing something, one of those reasons to get up in the morning,” says Cheryl Wallengren, whose husband died in May 2003 at age 50. She hopes that physicians and therapists will have their eyes opened by scenes like the one in which her husband enumerates the many useless features of a hotel bathroom for disabled guests, where, as Wallengren acerbically remarks, “they do everything they can to accommodate their less fortunate visitors.”
Oscar-winning Los Angeles filmmaker Chuck Workman, a juror for the Independent Film Project competition, says the panel unanimously chose Rolling as the best documentary among 63 juried entries.
“I’ve never seen anything like that before, where the filmmaker didn’t try to manipulate the material,” says Workman. “It’s very easy for a [documentary] filmmaker to manipulate and push an agenda. She was allowing the reality to speak to us. She was allowing the disabled people to speak to us.”
Berland hopes that Rolling will get wide exposure. When a major commercial network offered to air the show if she would make the three subjects’ lives appear less arduous, however, she declined.
She also wants the film to be seen by legislators, medical students, physicians and policymakers. “I think that disability rights is where civil rights was 40 years ago,” says Berland, now on the medical school faculty at Yale.
Berland said her mother reported seeing the world very differently after watching the film. “She said, ‘I’ll never look at a person in a wheelchair the same way. I’ll look at streets differently, I’ll look at doors differently, I’ll look at sidewalks differently,’” says Berland. “If I achieve that for others who see the film, I will have succeeded. That is making the invisible visible.”
A Wheels-Eye View
By Robert Samuels
“I am not a hero,” Galen Buckwalter, a C6-7 quad, explains toward the end of Rolling. “I am not a victim. I am not terribly disgruntled. Nor do I really care about walking again.” He’s doing the film, he says, because portrayals of disabled people in other movies have “little to do with my life in the chair.”
Galen was the only one of the three gimps in the documentary with whom I felt a kinship, but I’ve been a wheelchair user for more than two decades. Walkies, who know little about us, will have their eyes opened to problems they never imagined when they watch this unusual film. They may even be outraged at the daily indignities that we ignore because they are so routine to us.
We can’t expect the nondisabled to know that after 30 years of transfers and wheeling, shoulders can ache like Galen’s do. They also may be surprised to learn that although his chair is an important part of his very active life, it is not its center. This high-functioning quad is like many crips you and I know who enjoy rewarding lives in a chair. Most people, I suspect, don’t think that’s even possible.
Everyone will be sympathetic to Ernie Wallengren, although not because of his power chair. The soft-spoken television writer is dying of Lou Gehrig’s disease–amyotrophic lateral sclerosis. We watch Wallengren deteriorate and we feel his loneliness.
The movie also shows how people–not knowing what to say–fumble around gimps. A man at a party cheerfully reminds Wallengren that, “In every life a little rain must fall.” Someone should tell him that ALS is more like a 200-mile-per-hour hurricane than a passing shower. Although Wallengren shows us some gimpdom problems with a tour of a minimally accessible hotel room, he really teaches us more about facing death with courage, grace and gallant humor.
I suspect the film shortchanges his family. Wallengren worries about being a burden for his wife, but we only once see her helping him. He asks a son, who looks about 10 or 11, to stretch his sore legs. The kid, who is petting a black puppy, refuses. “You’ll pet that-waste-of-space dog, but you won’t stretch your own father’s legs. I’m shocked!” he tells the boy with mocking good humor.
Vicki Elman, the third person in the film, has had multiple sclerosis for 20 years. She must have once been able to cope with life’s tribulations. After all, while working full time, she singlehandedly raised a daughter who is now in medical school. Today’s Elman, at least the one she reveals, is a victim. She’s an intelligent, articulate disability activist, yet has difficulty solving her own basic problems. At times it seems her MS affects her mood and thinking.
She hasn’t learned how to get her power chair repaired despite having used one for eight years. We watch her hold on the phone waiting to ask her insurance company. After they answer, they bounce her around, finally telling her that she first needs her doctor’s approval. Why, you wonder, didn’t she know this? Perhaps a better question is: Why does our legislative system let insurance companies force us through the bureaucratic wringer?
Elman has badly banged up her legs with the chair, which hasn’t worked right for four months. Her cuts and bruises alarm her doctor. Since repairs will take “at least a couple of days,” he proposes that she wait in a convalescent home. Before you know it, Elman is passively checking in, like the proverbial lamb to slaughter. Couldn’t her doctor come up with a better solution?
Just before they confiscate Elman’s camcorder, an attendant tells her to poop in her diaper. It is easier for them to clean her up, the worker explains, than to put her on a bedpan. Four long weeks later, Vicki finally goes home to find they still haven’t completely fixed her chair. She doesn’t seem angry with any of this, but by now we are furious on her behalf.
Those are just some of the often-humiliating situations she filmed. It leaves you wondering why her daughter, or other relatives or one of her disability rights friends, doesn’t advocate for her. You never find out. Perhaps it’s all political theater. Elman is pushing for a California bill that would help subsidize home care for middle-class crips. Maybe she thinks she’ll win lawmakers over by appearing helpless.
Galen Buckwalter comes across as a man in control of his own life. He holds a Ph.D. in clinical psychology and is the associate director of research at a health insurance company. We see him telling a college class he teaches about how hard it was to watch his muscular teenage body deteriorate after his accident. He remembers thinking: “My God, am I really a person if I can’t feel and can’t move my body. How will I ever live?” Haven’t those questions haunted us all? Nondisabled filmgoers will get a peek at our real feelings and fears.
At his doctor’s office for his painful shoulders, Buckwalter points out a problem familiar to us all but not to your average walkie–the examining table is about 18 inches higher than his wheelchair. “It takes a helluva gimp to do that one,” he says ruefully. The doctor has no easy answers. Buckwalter wonders if he should have a shoulder operation or begin using a power chair. If he switches, he fears he’ll lose much of his self-image, giving walkies another new insight into what troubles some of us.
Those are the bad times that he shows us, but he shares plenty of good ones as well. There he is with his loving wife, hanging with his buddies and rehearsing with Siggy, his band. Now he’s unpacking the group’s second CD. He looks very happy. He deserves to be. Yes world, crips can be happy–and miserable–and this movie lets the viewer experience it.
My Lens, My Life
By Galen Buckwalter
The first time Gretchen brought the camera over was a short day of filming. The arm that was to attach to my chair and hold the camera drooped erratically and was positioned so I couldn’t see what I was shooting. But playing back the smooth, occasionally darting, but mostly velvety rolls 40 inches from the floor amazed me. I had never seen that shot before, the particular angle and velocity that life in a chair provides. There was something empowering in seeing that.
I had a vague political agenda born largely out of disgust with media portrayals of “disabled” persons, but I had no cinematic vision on how to combat these roles. The camera felt like a curious eye and I was not entirely sure what I wanted it to see. Knowledge is power, I figured; so let ’em see the gimp life: Here I am going to the store, transferring into my car, getting dressed, buttoning my shirt with a buttonhook from my long deceased Mennonite grandmother, playing rock star at Siggy’s CD release party at the Viper Room.
I’m the singer in Siggy–arguably the most educated band in rock and roll–(siggytheband.com). We play clubs in Los Angeles, from the trendy to the seedy–we’ve been called the “dirty little underbelly of rock and roll”–we being Ryan, a psychoanalytic therapist, guitarist/arranger muse; Paul, someone Ryan knew who played the drums at a Mennonite church and now should be Charlie Watts’ idol; and Deborah, who after seeing Siggy lose two bass players asked the question, “How hard can it be to play bass?” Deborah’s also my wife, a clinical neuropsychologist, and a woman of inordinate beauty, grace and passion who at the age of 49 picked up the bass and made it hers. And then there’s me–I’m associate director and senior research scientist in the Department of Research and Evaluation for Southern California Kaiser Permanente–Whew! Less from brilliance than from persistence I have expertise in psychometrics. Don’t ask what it means.
In concert with an increasing sense of trust in Berland, filming gradually turned from the factual to the subjective. It became a forum for my internal dialogue in the daily process of trying to live deeply despite the unremitting aches, pain, and existential auditions implicit in my life. It was at times an exhilaratingly insightful experience, at others difficult. I didn’t look at what I filmed. Gretchen and her editor, Mike Majoros, could decide if it was good, bad or pure ugly. All I hoped for was to give her unvarnished snippets of my life.
The first time I saw Rolling I wanted to crawl under a rock. All I could see were my foibles–halting speech, double chin, disjointed narratives. Not that these have disappeared, but I see a different movie now, one I feel honored to be a part of. No documentary will ever capture all the diversity and subtlety of living with profound physical limitations. And after filming some 60-plus hours of tape, I inevitably rue the loss of some moments to the cutting room floor. But Rolling is so much more than Gimp 101.
I have not yet met Vicki and will never meet Ernie. But every time I watch Rolling I laugh out loud at his impeccable timing and wit, and I marvel at the grace with which he bows out from a life with ALS. Vicki’s struggle with a health care system that seems to be specifically designed to denigrate her and waste the system’s resources infuriates me. But the lasting impression she leaves me with is her resilience and spirit.
In both of their experiences I see my future: ever increasing limitations, a struggle to find the resources needed to live with dignity and, at some point, the need to decide how I will go into that good night. The lasting effect of making this film is that it has forced me to grapple with my personal philosophy of disability. My body was once the core of my identity. Now I watch Rolling and see my body melding into my chair. Some days my changing body swamps my spirit, but on others I feel a stronger and richer individual emerging.
There’s a fundamental theory of disability in here, something along the lines that when life gives you lemons, well, you have some lemons. What we do with them depends on so many factors, so many choices each of us can make that will give us a good look at the cultural mirror that reflects our lives. And for a short while that mirror, for me, was a camera.
!function(f,b,e,v,n,t,s)(window, document,'script','https://connect.facebook.net/en_US/fbevents.js'); fbq('init', '3039672892940587'); fbq('track', 'PageView');