Guilherme is a member of ACADIM. Around forty-five years old, he is an electronic engineer, although retired a bit over five years ago. He uses a manual wheelchair. He has a Muscular Dystrophy, possibly Becker. He lives with his wife, Sofia.
He commented on how Sofia supported him when he walked.
Saturday, 19 March 2011
People: Beatriz
Beatriz, almost forty years old, is one of the friends who swam together. She works in the civil service and is doing her second undergraduate degree. She uses crutches. She has cerebral palsy as a result of a virus she had when she was eleven months old. She lives with her parents.
People: Teresa
Teresa is the president of ACADIM. Around forty-five years old, she is a retired teacher. She uses a manual wheelchair since thirty years old, and a motorized wheelchair from thirty-five. She has a Muscular Distrophy: facioscapulohumeral. She lives with her husband.
"Medicine might be divine, but doctors aren't Gods".
"Medicine might be divine, but doctors aren't Gods".
People: Júlia
Almost sixty years old, Júlia is one of the friends who swam together. Currently retired, she used to work in a bank. She has used crutches since about twenty years old, and for the past four years also uses a motorized wheelchair. The results of polio leave one of her legs immobile; after having used her crutches for so long she feels pain from tendinitis and bursitis. She lives alone.
Júlia is the principal proponent of the word "chumbado".
Júlia is the principal proponent of the word "chumbado".
People: Matheus
Almost fifty years old, Matheus is a physicist and one of the directors of ACADIM. He used a manual wheelchair since he was thirty years old, and got a motorized wheelchair at thirty-five years old. He has a Muscular Dystrophy; perhaps Emery Dreifuss. He lives with his mother and sister.
Matheus introduced me to many of his friends who met while doing adapted swimming (Introduction: The Research). I mention some of his experiences with asking for help from strangers and applying for his job in Chapter 1, Coordinating the Body and the Social and The Social Model Of Disability. I gesture also at the role a motorized wheelchair has for him.
The ways Matheus gets about Rio de Janeiro: sidewalks he uses and taking the unadapted bus to university.
Matheus introduced me to many of his friends who met while doing adapted swimming (Introduction: The Research). I mention some of his experiences with asking for help from strangers and applying for his job in Chapter 1, Coordinating the Body and the Social and The Social Model Of Disability. I gesture also at the role a motorized wheelchair has for him.
The ways Matheus gets about Rio de Janeiro: sidewalks he uses and taking the unadapted bus to university.
Ch1: Wheelchairs
Of the scenes that make up this work, we've talked about walking and about falling over. But these days most of the principal chumbados are using wheelchairs. Some of them use manual wheelchairs and some of them use motorized ones.
For each person, the wheelchair has a different place in their life. Júlia uses a motorized wheelchair, even though she can still walk with her crutches. (Sometimes she gets out of her chair and lifts it up a step, much to everyone's surprise). For her, the chair lets her live independently and go shopping by herself; she's dealing with pain from tendinitis and bursitis from having used crutches for over forty years.
Mateus uses a motorized wheelchair and that lets him get to work and have an independent social life. He still needs help at home with things like washing and going to the toilet, but he can go out and meet friends without the help of anyone else.
Fernando, like Mateus has a Muscular Dystrophy, but a bit more of a severe one. He uses a motorized wheelchair but goes out and about with his mother: he still needs help on ramps and with other things, and he's perhaps not as much of a risk-taker as Mateus. But his chair means he can get about independently at work (his mother comes back to lunch with him) and doesn't need people to push him.
It so happened that nearly all of the chumbados I got to know (partly because of many of them having Muscular Dystrophies) weren't really able to push their own manual wheelchairs because they didn't have strength in their arms. But some still chose to have them over motorized wheelchairs, and they gave various reasons.
Cost was a problem, but seen as something that could perhaps be gotten around; through economizing or other ways of raising money. More important was that a motorized wheelchair is heavy and inconvenient. It doesn't fit in a car (you have to take batteries out, which is a nuisance), and it's much harder to be carried up stairs in a motorized wheelchair than a much lighter manual one. And finally, many people didn't see it would give them any benefit: if there weren't lowered curbs or flat bits near their houses, what would they use it for? (We'll see later how the use of motorized wheelchairs spread through friendship groups, and one imitating the other). People are very conscious of how their choice will interact with the conditions in Rio.
For each person, the wheelchair has a different place in their life. Júlia uses a motorized wheelchair, even though she can still walk with her crutches. (Sometimes she gets out of her chair and lifts it up a step, much to everyone's surprise). For her, the chair lets her live independently and go shopping by herself; she's dealing with pain from tendinitis and bursitis from having used crutches for over forty years.
Mateus uses a motorized wheelchair and that lets him get to work and have an independent social life. He still needs help at home with things like washing and going to the toilet, but he can go out and meet friends without the help of anyone else.
Fernando, like Mateus has a Muscular Dystrophy, but a bit more of a severe one. He uses a motorized wheelchair but goes out and about with his mother: he still needs help on ramps and with other things, and he's perhaps not as much of a risk-taker as Mateus. But his chair means he can get about independently at work (his mother comes back to lunch with him) and doesn't need people to push him.
It so happened that nearly all of the chumbados I got to know (partly because of many of them having Muscular Dystrophies) weren't really able to push their own manual wheelchairs because they didn't have strength in their arms. But some still chose to have them over motorized wheelchairs, and they gave various reasons.
Cost was a problem, but seen as something that could perhaps be gotten around; through economizing or other ways of raising money. More important was that a motorized wheelchair is heavy and inconvenient. It doesn't fit in a car (you have to take batteries out, which is a nuisance), and it's much harder to be carried up stairs in a motorized wheelchair than a much lighter manual one. And finally, many people didn't see it would give them any benefit: if there weren't lowered curbs or flat bits near their houses, what would they use it for? (We'll see later how the use of motorized wheelchairs spread through friendship groups, and one imitating the other). People are very conscious of how their choice will interact with the conditions in Rio.
Ch1: ... And Falling Over
"When someone with Muscular Dystrophy falls over," someone tells me, "they fall on their face." "Whatever fall," another says, "and plah! like an alligator!" Falling over is not a simple business. The way you fall, what you hurt, and where you're left afterward are very important.
And it's a bit more complicated than these people (and I) thought. Each person -- with Muscular Dystrophies or not -- as well as walking in a different way, falls in a different way. Some people are falling over things on the pavement, others lose their balance, others trip over their own feet. Some certainly fall and hit their head, unable to brace their fall by landing on their knees or arms or arse. Other people fall to their sides, other people fall backwards.
I used to fall and hit my head. But while I was growing up I learned to collapse on my knees and stop hitting my head quite so often. Some other people do similar things, being able to brace with their arms. Clara (who has cerebral palsy) says she can't: she falls in "fast-forward". Her friends that can manage to brace themselves are people that fall in "slow-motion".
Gabriela remembers a fall from when her Muscular Dystrophy was first developing. She was crossing a busy road, in the middle "with a dozen eggs under one arm", she tripped, "I think on my own feet" and fell forwards. "I broke the eggs, they turned into an omelet." Her "luck" as she puts it was that she was near her home, and there was someone who came and stopped the oncoming buses.
Here, her relation with the road and the buses became as scrambled as her eggs. But she continued in the place she'd chosen to cross the road (not at a crossing) and with the people who were nearby. The possibility of falling can be influential in choosing where and how you live and go places, and likewise who you do those things with. It's one of the reasons you might have to start using a wheelchair.
And it's a bit more complicated than these people (and I) thought. Each person -- with Muscular Dystrophies or not -- as well as walking in a different way, falls in a different way. Some people are falling over things on the pavement, others lose their balance, others trip over their own feet. Some certainly fall and hit their head, unable to brace their fall by landing on their knees or arms or arse. Other people fall to their sides, other people fall backwards.
I used to fall and hit my head. But while I was growing up I learned to collapse on my knees and stop hitting my head quite so often. Some other people do similar things, being able to brace with their arms. Clara (who has cerebral palsy) says she can't: she falls in "fast-forward". Her friends that can manage to brace themselves are people that fall in "slow-motion".
Gabriela remembers a fall from when her Muscular Dystrophy was first developing. She was crossing a busy road, in the middle "with a dozen eggs under one arm", she tripped, "I think on my own feet" and fell forwards. "I broke the eggs, they turned into an omelet." Her "luck" as she puts it was that she was near her home, and there was someone who came and stopped the oncoming buses.
Here, her relation with the road and the buses became as scrambled as her eggs. But she continued in the place she'd chosen to cross the road (not at a crossing) and with the people who were nearby. The possibility of falling can be influential in choosing where and how you live and go places, and likewise who you do those things with. It's one of the reasons you might have to start using a wheelchair.
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