What I Wish I'd Known About Life in a Wheelchair, From Doctor and Filmmaker Gretchen Berland
In 2001, the doctor in Gretchen Berland wondered if physicians, nurses, professional caregivers, and others in the new era of "patient-centered care" really have a good enough grasp on their patients' lives and perspectives to center care around them. The filmmaker in Berland decided the best way to find out was to give video cameras to three volunteers -- in this case, people who used wheelchairs -- to record their daily interactions from their perspective. The result, Rolling, is a real eye-opener, as Berland herself discovered.
"I found out that there are a lot of small things that can end up having a huge impact on someone -- such as how well you listen to them, or whether or not you sit down when you talk to them," says Berland. "People think those things are soft and subjective, but if you sit down, a person may be more inclined to tell you something."
A viewer spends enough time with one of the filmmakers, Galen Buckwalter, to see that his overworked shoulders are in deep pain and it takes substantial effort for him just to get ready and drive to his doctor's appointment. After he waits 40 minutes in the exam room, the doctor comes in for a brief, superficial conversation that leads nowhere. He stands the whole time, literally looking down on Buckwalter, who has no way to hoist himself onto the exam table.
"If doctors really think about what it takes for someone even to get to your clinic or how long they waited, they might do things differently," Berland says. "For the most part, we see people in 15-minute increments in a very sterile environment. We don't live in a system that really allows us to think about what their lives are like."
Two scenes with Vicki Elman (shown above), who raised a daughter as a single parent with multiple sclerosis, are particularly wrenching, and revelatory for caregivers. In one, at a nursing home where Elman must live for four weeks while her wheelchair is being fixed, an attendant refuses her request to take her to the bathroom, telling her to do "number two" in her diaper. When Elman says that's not easy to do, the woman replies, "It's not easy to put you there, then put you back." (After this incident, nursing home staff took away Elman's camera.)
In another scene, a paratransit driver transports Elman home from an event when her "fixed" wheelchair stalls again. He drops her off ten feet from her door because that's company policy, even though she's stranded outside; there's no way she can get into her home.
"Technically, the driver was doing his job. But even if he couldn't stay to help her, he could've called 911," Berland says. "It's those things that can really make a difference in terms of how people in wheelchairs feel about themselves."
To Berland, the interactions on film show that we must expand our concept of what it means to provide care to another person. "Caregiving is part of every human interaction. It's an exchange between people -- not just with the nurse or physical therapist or occupational therapist, but with the transportation driver who picks you up when you need to go to your doctor. There's a piece of caregiving in that -- whether that person treats you with respect and kindness and empathy. It's just not that hard."
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