Ch1: Walking Funny

One of the principal scenes we need to look at is the way people walk.

I know in most detail my own way of walking. I walk a bit funny in a tiptoed-lopsided-unstable waddle. I navigate around cracks and bumps in the uneven pavements of Rio de Janeiro; I am quite cunning in where and how I will choose to cross roads. Because I walk more tip-toed on my right foot, I find it quite difficult when the pavement has even a slight gradient from right to left (meaning my right foot is even higher); it's much easier when the slope is from left to right, and I will cross the road a few times if it helps me choose the easier slope.

When the floor is flat, or flat-ish, I work without supports. But when there's a step, rough ground, strong wind, I'm with someone cute or passing through a narrow space, I'll walk leaning on something or being supported by someone.

Only one of the principal fifteen chumbados currently walks freely. Of the others who walk or who walked in the past, they use or used various supports: crutches, walking sticks, other people, walls and furniture.

Júlia, with a leg paralysed by polio, has used crutches for most of her life; so has Beatriz who has a cerebral palsy. When they're inside, they'll both often prefer to use solid objects to lean on rather than their crutches. Beatriz says that even though crutches give her independence, they make her feel imprisoned, and she feels freer when she can use something else.

In general, people with Muscular Dystrophies aren't so likely to use that type of support, because their arms will be weaker too. This depends a bit on the Muscular Dystrophy: types that affect the lower body before the upper body might give people a chance to use comparative strength in their arms.

The result is that people need to be supported more than they can support themselves with their own strength. A couple of people spent periods where they only walked with someone else's help: be it a helper or family or a spouse.

Even then, however, walking can still be unstable. A few people told me about how it became harder and harder. They got to stages where while they could still get about, their legs would give out from under them for no reason and without warning. In the case of Guilherme (who maybe has Becker Muscular Dystrophy) the halt of an elevator was enough for him to fall over. He and his wife Sofia say that she was very quick to react: she "didn't allow him to fall". But when he was with other people with slower or less practiced reactions, he would. (How well they know each other!) Falling over is a big part of walking funny.