Sharing the Caring

We don't understand each other. There are so many things caregivers don't really understand about the very people they are caring for. To be fair, the cared for do not understand many things about their carers either.

When I used a manual wheelchair my mother would push me out of the way, facing toward the wall. I talked to an actor who played a woman in a wheelchair. She told me people on the set often placed her facing the wall, too. What was intended to be helpful was actually seen as thoughtless. Why would we want to sit facing the wall? It felt as if we were just being put aside.  Even the actor who was fully capable of walking was pushed aside because she was in a chair.

In 2001, Gretchen Berland gave cameras to three wheelers who filmed over 200 hours of footage documenting their daily lives and interactions. If I had a camera, I could have shown my mother the wall, and she would have understood. I could show the city how my chair goes bUMPty-bUMp on the sidewalk cracks as I roll through my neighborhood. Actually seeing it leaves more of an impression than just being told. Berland’s documentary called Rolling, "a raw perspective of life in a wheelchair," illustrated the symbolic powerlessness of the chair.

It all begins with the simple fact that wheelers must look up at uprights. One scenario in the film shows a wheeler's tiring and difficult trip, followed by a long wait, and then a very brief, cursory visit with the doctor who towered over him the whole time. Another vignette shows dusk falling as a woman sits stranded between a paratransit transport and her front door when her electric wheelchair stalls. The transport driver complied with his rules which do not allow him to take passengers into their homes.

Uprights do not understand how it feels to be patted on the head or to be pushed out of the way. At the same time, wheelers do not always understand the upright’s motives and often awkward attempts to help. My mother was pushing me out of the crowd so I would not be overwhelmed by bellies, butts, and swinging purses in my face. My actor friend was pushed out of the way as they were hurriedly clearing the set. It is not the act of thoughtlessness as much as just not understanding. How can we show wheelers the carer's perspective?

Wheelers must try to communicate, and uprights must try to be compassionate. At the same time, we must try to understand the other's perspective and maintain a sense of respect and humor. Hmmm...well at least this wall has pretty wallpaper.

Here are some articles that tell more about the film:
Rolling: actual clips

Berland's interview
Caring.com article
Yale Daily News
Disaboom article

Here are some links about caring for our carers:
Psychology of caring
Family Physician Guide to helping carers cope
Strength for caring
AARP care for caregivers