Talking With Gretchen Berland: Life in a Wheelchair

The physician's film "Rolling" shows that nothing helps you understand what life is like in a wheelchair better than seeing it for yourself.

How can you truly understand what life feels like for a someone in a wheelchair? Borrowing from the old adage "walk a mile in my shoes," Gretchen Berland's documentary Rolling puts viewers in the wheelchairs of three individuals who must use them. Filmed primarily by these people, often from video cameras mounted on their wheelchairs, and culled from 200 hours of footage taken over a two-year period, Rolling provides an amazing crash course in life from their angle -- which, to begin with, requires looking up at most people. For caregivers, it's a must-see film -- wrenching, but also informative, inspirational, and humorous.

An Emmy-winning documentary filmmaker who entered medical school at the age of 28, Berland originated the idea as part of a research project to understand the daily experience of being in a wheelchair. In the hands of her three volunteers, what one of them calls the "gimp documentary" grew from a recording of activities, such as getting dressed and opening doors, to full portraits of people faced with interactions that can strip or preserve their dignity, and their perseverance and frustrations in the face of them.

Rolling shows them taking out the garbage, vacuuming, camping, at awkward social events, and with friends and neighbors who are comfortable enough to joke with them about their disabilities. It also highlights largely insensitive treatment from the doctors, nursing home staff, and companies that are ostensibly there to help them. Vicki Elman (pictured above) records herself on the phone going through massive red tape to get her wheelchair repaired. At one point, she asks in frustration, "OK, so if I'm out and my wheelchair gets stuck and I can't go anywhere, then when they come and pick my body up, is that considered an emergency?"

Even before it began airing on public television stations in January, Rolling had begun to win awards for Berland, an assistant professor of medicine at Yale University, who also sees patients at a family practice clinic. Last fall, she was selected for a MacArthur Fellowship, also known as the MacArthur "genius" award. Berland spoke with about what caregivers and others can learn from her film.

Elderly people often say that the caregivers and healthcare professionals they encounter yell when they speak to them, as if all old people are deaf. Is there a common response to people in wheelchairs?

If you're in a wheelchair, they'll do that. Or they'll pat you on the head or talk to the person who's ambulatory as if somehow you're not there. Nursing homes have a reputation for being relatively sterile and impersonal, so you walk into a room and there's a body in a bed and that person is in a gown and there are maybe three other people in the room, and it's very easy to look at that body and say it's not a person.

Then we have to ask: How often does the staff even touch that person? Where do they touch that person? Do they hold the person's hand or put their hands on her shoulder or back? All those teeny little moments add up to compassionate care.

Is there a common theme that runs through the experience of the people in the film?

Even though each person came from very different circumstances and was using a wheelchair for very different reasons, there was a universal theme: How do you live independently in a dignified manner? And independence for every person has a different set of definitions. At the same time, each of them was also concerned about becoming a burden and how to balance that with the desire to live with as much quality of life as possible.

The wife of Ernie Wallengren, who was diagnosed in his late 40s with amyotrophic lateral sclerosis, Lou Gehrig's disease, was his principle caregiver for a very long time. She is an incredibly strong person, but with ALS, the people on the front lines are the family members. Ernie worried about the balance between loving his wife and becoming a burden for her. And there's no right answer to that -- every day it can be different.

On the other end of the spectrum is Vicki Elman, who is in her 50s and has multiple sclerosis. She's in a capitated Medicare plan and the services that she has are very limited, so her ability to choose caregivers and the quality of caregivers are also limited.

Are people in nursing homes seeing the film?

Nursing home residents in New Hampshire are using Rolling as a means to talk about issues of power and equitable care. They ordered about 15 copies of Rolling and have had screenings regularly with their nursing home staff.

One very difficult scene is when Elman is left stranded in her malfunctioning power wheelchair for hours ten feet from her front door, because a paratransit driver says it's against company policy to help her into her home.

For the most part, paratransit doesn't have a great reputation for providing high-quality care. Technically, the driver was doing his job. There are many things people can do within the boundaries of their job descriptions that can really depersonalize someone. Even if he couldn't stay to help her, he could've called 911. It's those things that can really make a difference in terms of how people in wheelchairs feel about themselves.

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.

What can family caregivers do to try to prevent something like that?

If you have those kinds of incidents happening, you have to notify the paratransit company in your area.

And to prevent insensitive treatment in a nursing home?

Talk to the people at there. Tell them that you've had a very hard time with other hospitals or nursing homes because the people there haven't really listened to some of the things you've talked about.

You can say, "We want to make sure that doesn't happen this time. Is there anything we can we do to make sure of that?" If that doesn't work, you take it up to a nurse manager, and if that doesn't work, to the ombudsman. And if that doesn't work, you write your provider or your payer, depending on what the incident was.

There are lots of ways people use to justify the system that we have, because it works reasonably well most of the time. But when you're on the receiving end -- say, when your mother has been stuck four times in a day for a blood draw, and she's got bruises all over her arm -- you have to ask, "Does my mother really need to be stuck this many times?" And even when you ask that question, you often can run into resistance.

In another incident that could have gone very badly but didn't, Elman was getting ready to go out and fell on the floor, undressed. She had to summon her neighbors to help her.

That's a really important scene, and the reason it's important is because the people who helped her get back in the chair treated her with dignity. So even though she was on the floor with her backside quite exposed, they made the best of a situation. In a nursing home, the staff might well have said, "What did you do? How could you have fallen down?" But rather than making it her fault, the neighbors kind of made light of the situation and got through it, and it really wasn't that hard to do. It probably didn't take more time, and it didn't take someone who is paid a zillion dollars to figure it out.

Interactions with doctors in the film are pretty harsh. As a physician, what did you learn from the film?

I realized that I probably know a lot less about my patients than I thought I did. 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. People think those things are soft and subjective, but if you sit down, a person may be more inclined to tell you something.

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. 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.

Does the film have an audience beyond people with disabilities and their caregivers?

Nashville public television did a huge outreach initiative with the Boy Scouts of Tennessee. I would never have expected that this would be on their radar, but they have a disability badge and they wanted to use that as a teaching tool.

This week I got a call from one of the big Florida health systems. They want to use the film as a teaching tool for their employees. There are a lot of philosophy programs, disability study programs, occupational therapy programs, physical therapy programs, and rehab hospitals using it. Architects are also using the film.

Rolling is being seen around the world. Does it get a pretty universal response or are people in some other countries surprised at the experience of people with disabilities in the United States?

I would say the response has not been cultural. There are common themes to the disability experience that transcend borders. In some of the countries that have socialized medicine, though, people were just shocked at the insensitivity that could occur in the U.S. system, which is sometimes touted as the best.


over 7 years, said...

As a1952 Polio victim using cain crutches, to walker, to wheelchair, at 81, I can happily say others do care. My wonderful family, four children and husband loved me every inch of the way! I've had many falls, surgeries and lived a ful,l ordinary life of mother and wife......I was educated today reading about Rolling!! Thank you!