Chumbados in Rio

Ch1: Many Ways To Access

2011-03-20T10:06:00.000-07:00

We've seen that the physical state of physical accessibility in Rio de Janeiro isn't great. But my idea of an imagination is to look at other ways of doing things.

First I should stress that Brazilians really are quite helpful. Or, to put it better, the people that I met (and me too) find that when we needed help from strangers in Rio de Janeiro, they are very good at giving it. In interviews people downplayed the explicit prejudice they would encounter, and emphasized the positive aspects. Rio de Janeiro is a place where if it looks like you need help, people will offer. Brazilians are surprised when they go to Europe and when someone that has an accident on the streets they see that others don't run to help.

When I was asked how the accessibility was at my university, I had to say well, it's pretty rubbish in physical terms (big steps, a massive flight of them down to where we needed to do xerox-ing) but pretty good in human terms (people were helpful, and several helped with my xerox-ing, for example).

Before any of Rio's buses were accessible, chumbados still got about using them. To go to university Matheus would go with a helper. The helper would lift him in, fold up Matheus' chair and then go up himself; and to go out to the same in reverse. I'm not saying that this situation is great; I am saying that there are many ways to deal with and transform physical situations.

My final note is that people have different requirements. A university (UERJ) has ramps and lifts and so forth; I thought it was pretty accessible. To my surprise, Gabriela told me that "they didn't make the university for disabled people. They made it for athletes". With crutches the ramps and walking were difficult for her; and she had to use the service elevator (which she had to shout for, because there wasn't a button) because the normal elevators didn't stop on every floor. Other people who used the university had other issues; the type of desk they needed, for example, and the trouble in arranging that.

What is marked as "accessible", even in purely physical terms -- an entrance, a bathroom, a building, a bus -- might well be far from being so for many people. Accessibility is a complex affair.

Ch1: Rio de Janeiro

2011-03-20T09:59:00.001-07:00

Rio de Janeiro, cidade maravilhosa, the marvelous city. Rio has plenty of hills, on many of which are favelas, but most of the people I researched with lived and did everything on the flat bits and belonged, more-or-less, to the middle class. We were mostly in Zona Norte, which isn't the most accessible part of the city, but in relative terms of the city as a whole is pretty decent.

This is the background of my research. In this post we're gonna talk about sidewalks, buses, the metro and taxis. But we should note that physical accessibility isn't the only way to think about these things.

It's pretty hard to describe this. Sidewalks are high and not always lowered. Awesome. This is by no means as bad as some other Brazilian cities (I'm looking at you Belém de Pará -- they have higher sidewalks because they get more rain, perhaps). The sidewalks aren't exactly flat or properly maintained. "The holes," Fernando tells me, "celebrate birthdays".

Some sidewalks have had work done and ramps installed. Matheus called the principal ones his "highways". But just to give you an idea: the area where I lived, Vila Isabel, had two main roads going through it. Of the two, only one had reasonable-ish ramps on the sidewalk.

What this means is that if you use a chair in Rio it means having to use other ramps (like for garages), going the long way round, or, in many cases, taking your chair onto the road for small patches or for whole blocks.

Those are just the pavements! This list is going to start turning into cliches of problems with accessibility, if it isn't already.

There are loads of buses in Rio, and probably the principal way people get about. The normal buses have three or four big steps to get in and out; and they often don't stop near any official stopping point, or the sidewalk. There are buses that have the little accessibility sticker on them and they use the scheme of an elevator on the steps on the way out.

What goes wrong? Sometimes they don't stop for someone in a wheelchair. Sometimes the driver will refuse to use the lift because he doesn't want to, or doesn't know how, the lift is broken or (it's hard to know when these are the truth or not) that he doesn't have the key. If the driver does decide to try, it can take 5-10 minutes even at the best of time. (No wonder he wouldn't stop during rush-hour).

Three different people told me about accidents they had going up and down these, although they didn't hurt themselves (two were caught by someone who was there.) The general idea is that you have to teach the driver how to use the lift, and that things'll be much easier if you catch the bus at it's start/end stops rather than on its route.

The underground. This is better, but depends a bit on what stations you use. Some have lifts and everything's fine and dandy; others have flights of stairs. But the staff are trained, and most of the time helpful. They'll help you up and down an escalator in your wheelchair; and when they don't have that, or a stair-lift or the "robocob" (a machine that goes up and down steps), then they'll carry even motorized wheelchairs up and down steps. They'll call people from other stations to help, if need be.

Taxis. There are adapted taxis in Rio, with space for a chair. They don't have that many cars, though, and they stop work at 10pm, so you'd better book ahead and get home early!

Many of these things could and should be changed. But it's more complicated than just inaccessibility.

People: Filipe

2011-03-20T09:54:00.000-07:00

Filipe is about thirty-five and a member of ACADIM, having a Muscular Dystrophy (possibly Becker or Limb Girdle). He worked as a secretary and since retired. He lives with his sister and family.

Filipe uses a skate-board to get about in his home.

Ch1: Background

2011-03-20T09:53:00.000-07:00

We've talked about the ways people walk or use wheelchairs and partly I have to explain a little bit better what conditions are like in Rio de Janeiro now and in the recent past, so someone who hasn't been there can get a bit of an idea where these things are taking place. But first I should say that when I talk about "background" I mean something a bit more than just the details of the city...

One example that fascinated me, although sadly I never got to visit, was that of Filipe. Many people altered things in their homes, like the height of light switches or of their bed, or of bathrooms and toilets. But Filipe went further, and redesigned his house and the way he did things.

At home, in "his place" [cantinho] he used a skateboard to get about. He sat down on it and moved himself around with his arms, in his words, "like a crab". The stuff he did at home was all on this level. He slept on a low mattress, and ate meals and used a laptop all on low tables.

It's "very convenient" for him, and everything in the room and house is as he likes it. He remodeled his corporality in the house, and the corporality of the house. He turned a skateboard from something used for fun or sport into something used in routine movements.

I find his example inspiring. Eating food seated at the table wasn't convenient, so he changed the table and chair. This means that when we think about people's difficulties of doing stuff, we should think of Filipe: could someone do something easier if we had a big redesign?

The "background" of one's home can be modifies according to financial capabilities, the right to make changes in the house and one's own imagination. The "background" of a city, and the situations in Rio de Janeiro is much harder to change.

People: Fernando

2011-03-19T18:12:00.000-07:00

Fernando is one of the members of ACADIM: he has a Muscular Dystrophy, possibly Duchenne. He is around twenty-five years old, and works in a bank as he studies for his degree. He uses a manual wheelchair since twelve years old and a motorized one since twenty-one. He lives with his mother, Andréa.

Fernando on sidewalks in Rio: "The holes celebrate birthdays."

People: Gabriela

2011-03-19T18:09:00.000-07:00

Gabriela is around seventy-five years old. She is one of the members of ACADIM and has a Muscular Dystrophy (possibly limb girdle). She used a walking-stick and crutches for the past twenty or so years. For about eight years she uses a manual wheelchair and then a motorized buggy. She lives alone.

Remembering when she fell over in the road.

People: Clara

2011-03-19T18:06:00.001-07:00

Clara, about fifty-five years old, is one of the friends who swam together. She receives her father's military pension. She walks without supports. She self-diagnosed with cerebral palsy. For the past five or so years, she has lived by herself.

Falling over, in "fast-forward".

People: Guilherme

2011-03-19T18:01:00.001-07:00

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.

People: Beatriz

2011-03-19T17:56:00.000-07:00

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

2011-03-19T17:50:00.001-07:00

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".

People: Júlia

2011-03-19T17:41:00.000-07:00

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".

People: Matheus

2011-03-19T17:29:00.000-07:00

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.

Ch1: Wheelchairs

2011-03-19T15:52:00.000-07:00

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.

Ch1: ... And Falling Over

2011-03-19T15:46:00.000-07:00

"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.

Ch1: Walking Funny

2011-03-19T15:43:00.001-07:00

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.

Ch1: Setting The Scene

2011-03-19T15:42:00.000-07:00

Now that we've been through the main theorizing and posturing part of the work, we can get on to the fun stuff. I'm going to present the people I met in terms of scenes. of the ways people walk and fall over, the ways people use wheelchairs, the general conditions in Rio de Janeiro, and then finally the body by itself. These scenes repeat themselves in people's lives and throughout our work.

Ch1: Experiences of Our Own Bodies

2011-03-19T06:55:00.000-07:00

We've talked about the ways the body and social might be coordinated, about the social model of disability and a way of seeing the how individuals do different things with their medical conditions. But what these discussions in the abstract leave out are the experiences of people's bodies.

I want to find a way of talking about corporalities that brings in the pains and pleasures and lethargies and rushes, the feelings and experiences of being in a body. The people I met felt pain and tirednesses that were big factors in the way they did things. They also had moments where their bodies were unreliable, they might lose their balance or their leg might give out.

In relation to "disabled" bodies, this point has already been made. Jenny Morris who demands, in relation to disabled women, that the "experiences of our own bodies" be taken into account, be they restrictions, pain or fear of death.

There are also authors, such as Maurice Merleau-Ponty, and based on his work, Thomas Csordas, who want to see the body as everyone's means of having a world, or of being-in-the-world. They base their theories the fact we perceive and construct the world through our senses, and carefully trace the ways we do so.

These perspectives are vital, but I want to find a middle ground. I don't want the experiences of our bodies to overwhelm our other descriptions. Bodily experiences, perhaps especially those of chumbados are often left out of or distant from much writing and abstract thinking. But I hope that bringing our experiences in in will complement other ways of thinking rather than negate them.

To that end I want to limit the ways we get carried away with talking about bodies. I like to think in terms of a distributed personhood, or the ways we are in the world are through things we make and stuff we use. A solider by himself is one thing; but the person he is is very different when you consider him as a soldier with a weapon. A more friendly example might be of the relationship between someone and a book they've written, and how an important part of them then resides separately from their body.

The ways our bodies -- and different parts of them -- are caught up in the stuff we do is very variable, and our relationships with our corporalities are different. So the place of bodily experiences will take a correspondingly shifting place in our work.

References

Jenny Morris combines a feminist perspective with one on disability. See, for example, a work she edited: Able Lives: Women's Experience of Paralysis (1989). Maurice Merleau-Ponty in Phenomenology of Perception sees the body as a means of having the world, and among many other things writes about how bodies are extended with things like hats or canes. Thomas Csordas uses Meleau-Ponty's work, although I find Csordas a little difficult and possibly wrong; try "Embodiment as a Paradigm for Anthropology" in Ethos 18(1):5-47 (1990) for a start. The idea of distributed personhood and seeing objects in their social relationships comes from Alfred Gell and his Art and Agency (1998).

Ch1: Social Model of Disability

2011-03-17T10:46:00.000-07:00

There's a "social model of disability" that addresses examples like Mateus and when he was in his wheelchair and mistaken for a beggar. The social model says there's a difference between impairment - the condition of the body, and disability - the social exclusion. It's not someone's dodgy legs that stops them getting on a bus, it's the steps of the bus. Or, it's not Mateus' body that would've stopped him doing a job, it's the prejudice of employers. This model is saying that the physical and social bodies shouldn't be coordinated, that a physical defect shouldn't result in a disadvantage.

This response, in one of its extremes, is wonderfully brazen: looking everywhere except the body for the body's corporality. And, from that, we can learn, to look at sidewalks and buses and buildings as places where corporalities reside too. If we take out the bit about it being done by humans, we can see that corporalities reside in jungles and rivers in ways not necessarily created by a society, and they exist in the cracks in the sidewalk caused by rain, too.

But the body itself ends up being hidden. An approach that separates the natural (impairment) from the cultural (disability) stops us being able to talk about the natural. And the important thing is precisely the frontiers we draw between the two, and how some things give the impression of being physical and inevitable - someone's body, for example, or a medical condition.

What Mateus did in his personal life and daily encounters was to influence other people's reactions to his physical condition: through explaining, or through legal action. There are many different coordinations that can be made: the person that saw Mateus in a motorized wheelchair could've said, hey, that's quite expensive, he's probably not asking me for money. As Mateus gets to know people, his employers and colleagues included, they understand him in different ways.

Our own theorising has to keep up with what people are doing in practice. The separations and connections between the body and the social are very real questions in people's lives as they manage and negotiate their corporalities.

References

A reference for the "social model of disability" is Oliver, The Politics of Disablement (1990). In my critique of this model, I'm using the critiques Butler makes of the division between sex and gender in Bodies That Matter (1993).

Ch1: Coordinating the Body and the Social

2011-03-17T10:40:00.000-07:00

The way I've set up the concepts in this work is that we are studying corporalities: the connections between bodies, objects and words and that this is a dynamic imagination. We're going to check my ideas about other ways of talking about bodies ("disabled" or not) that were reference points or inspirations for my own.

In this and the next post I'm going to talk about ways of relating the body and the social. I compare two different approaches, that I see as kinda opposites: British anthropologist Mary Douglas' work on the body and Michael Oliver's idea of the "social model" of disability.

In "Two Bodies" Douglas writes about the coordination between physical and social experiences of the body. She says that there is a dense and continuous communication between the two, and because of this, they are likely to be coordinated with each other. It would, for her, only be through a deliberate and conscious effort that they were not.

This is why there are representations of Good People being Good Looking, and Villains being Ugly & Deformed. There's a coordination between their bodies and their characters. And the people I met definitely experience this.

Mateus, using his motorized wheelchair, sometimes asks for "help" from strangers. Sometimes people think that he's asking for financial help, making the assumption that because he's in a wheelchair he's begging for money. And it's not just strangers that are the problem. To enter into his current job, he had to sue his employers, because they had rejected him on the basis that he would never be able to do the tasks necessary (citing lab-work, rather than the computer-based work he actually does).

Our next stop is the "social model of disability", which tackles precisely situations like these and will let us see a bit better how coordinations are less something to be taken for granted and more something that is actively being negotiated.

References

Douglas' essay on "Two Bodies" is in Natural Symbols - Explorations in Cosmology (1970).

Ch1: An Imagination (and "Accessibility")

2011-03-10T08:43:00.001-08:00

There are a few ways in which I see the idea of corporalities that I am developing here as an imagination. Let me give you an example of how this work has changed my own vision.

When I went to a new city, I would always look out of the bus/taxi windows to see the sidewalks and buildings. If they were high, they would scare me, and I would wonder how I was possibly going to get around if I couldn't get up the steps? If they were low, or there were ramps, I would feel elated and confident: I could take these steps! I'd be able to go where I wanted!

What I was seeing was accessibility in very personal terms: but I understood accessibility to be a purely physical matter. I was calculating the mechanics of whether I could physically get up or down some steps or a flight of stairs, and sometimes looking enviously and people who go up steps two at a time.

The imagination I am proposing is that these physical perspectives are true and important but not unique. It's not just the steps that are important: it's the people there and the ways they do or do not help one get in and out; and it's the alternatives available to going to that place.

We're going to navigate medical categories of disease, the physical properties of people's bodies and their environments: we need to find a way of talking about them that takes them seriously but that is nimble enough to keep up with the number of ways people in practice are doing things.

My research takes the experiences of people with diverse corporalities and tries to use them creatively. From an individual experience we find things that are suggestive about corporalities other people are involved in. While my principal subjects are chumbados, the ideas I develop are not meant to be restricted to them.

This discussion is carried out in practice when we compare the difficulties of access in Rio de Janeiro to other ways of thinking about it.

Ch1: Corporalities - Bodies, Objects and Words

2011-03-10T08:42:00.000-08:00

Having moved away from the term "disability" and chosen the word chumbado, let me get on to the subject of my dissertation: corporalities.

By corporalities I mean the imagination of connections and relations between bodies, objects and words. Let me give examples from my fieldwork that show why I chose these three categories.

First, bodies. Many of the people I met do not get about the city by themselves, or do routine things at home by themselves. People who use manual chairs but don't have the strength to propel themselves need some to push. Also, some people need help with some or all of washing, getting dressed, going to the toilet, or turning over in their bed. The things they are doing on a daily basis involve more than one person; or in other words, their corporalities are produced by various bodies.

The use of wheelchairs and crutches already calls attention to the way objects are in relations with bodies. But I want a broader idea of objects that includes floors, sidewalks, buses, steps and entrances to buildings. These form people's corporalities not just by the way people physically interact with them but also by the decisions people make about where they will or will not go.

Finally, words, which I mean in a broader sense of discourse. Corporalities aren't only made by their physical properties: they are also formed by the interpretations of these properties. We'll see how situations that are similar in physical terms are seen in very different lights by different people and how their reactions are correspondingly diverse.

As you can see, I'm trying to make a notion of corporalities that doesn't just apply to chumbados. This is part of what I mean by this work being the development of an imagination.

Ch1: Theories of the Body and the Social

2010-11-14T17:59:00.000-08:00

Whoops! I take it all back! What I wrote here has been changed and split into the posts on coordinating the body and the social and the social model of disability. Thursday, 17 March 2011.

Ch1: "Medicine might be divine"

2010-11-11T16:50:00.001-08:00

"Medicine might be divine," Teresa, the president of ACADIM tells me, "but doctors are not Gods." We're going to use this phrase to help us continue our discussion of coordinating the body and the social and the social model of disability. Teresa's words help us to think about how an individual can react to fixed conditions.

One of the purposes of ACADIM is to spread knowledge about Muscular Dystrophy in Rio de Janeiro. "Lots of doctors don't know what the dystrophy is," Teresa tells me, and she works for "adequate treatment". When she says that medicine might be divine, she works on the principle, spreading up-to-date knowledge, letting doctors know, and encouraging people with MD to find out accurate diagnostics and useful advice. She has a faith that it is through medicine that we can get to know our own bodies.

But doctors are not Gods. And with this I took her to mean a lot more than just a doctor who's unprepared to deal with someone who's got a Muscular Dystrophy. She particularly mentions cases of negative and immobilizing communications of diagnoses, but I think she's talking about a much wider issue: about people not letting their lives be ruled by their medical diagnoses.

She encourages people with degenerative muscular disease to consider the number of options they do have, and the number of possibilities that are open to them. If people go to the gym to work out and get well-defined muscles (sarado), she asks me, "why don't we with the disease go look for something for us to do too?"

The concrete suggestion here was hydrotheraphy. But what I admire in her question is that she saw something that she could not do - going to the gym and working on showing off a musculature - and she turned it into something that she could: valorizing the pleasure of working her own body.

What is at stake is not the divinity of medicine, but rather what we do with it.

Post modified Thursday, 17 March 2011.

Ch1: Corporalities - Conjunctions

2010-11-11T16:39:00.000-08:00

Ok, so I changed my mind about all of this. I've better expressed myself when I talk about corporalities as bodies, objects and words. Thursday, 10 March 2011.

With this work, I'm proposing an imagination of corporalities as conjunctions between bodies, objects and words. By imagination I mean thinking about them rather than saying what they are; I mean an understanding that is flexible to understand transitory and more permanent situations, and able to take several perspectives in front of one (or thereabouts) set of facts.

This is a social imagination, which means it might sometimes say things that are a little odd. In part this is playing down the importance of individuals' bodies (yours or mine, say), and instead of seeing them as things that exist in themselves as things that exist in relations.

Perhaps the link is obvious between someone and the wheelchair they are sitting in. But I'm using conjunctions to talk about more diverse links; say between that person, their chair, and the sidewalk; or that person, their chair, the elevator with a raised step in their house, and their mother that helps them get into that elevator. And each of these things are also connected with what people say about them.

Those examples were each additive - first the person, then person + chair, then person + chair + sidewalk and then person+chair+dodgy elevator+mum. I also want to consider conjunctions that are cross-sectional, in that they might not include all of a person.

Consider two people playing a computer game against each other. Here the relationships that are relevant are between their hands -- an interaction between fingers and eyes. The rest of our bodies might be quite static, here: and some of the people I met have little enough strength in their arms to make moving them not something simple. If someone's arm rests while their fingers perform complicated manouvers and they thump me at Pro-Evolution Soccer, then the conjunctions important to me were between parts of their body + the computer + parts of my body.

Of course, we can then look again at how each of us were sat in our chairs, and the table the computer was on, and the size of the room. Things that "can" and "can not" be done in one situation, like someone reaching something or lifting it, might well change if the height of the table were different and they were sitting on the floor.

This is a reason I'm going to be reluctant to talk about something being "inaccessible". I was watching a film where someone ran up the stairs, back in the 1960s. Awesome. Now, I can't do that, and I know lots of people that can't either. And so of course we wouldn't be in that situation: it might well be that people would help us up the steps, or we'd find a way to do it on the groundfloor, we'd go somewhere else, or, we'd simply be excluded. Being simply excluded is just one of many possible options, and to call that set of stairs "inacessible" is hiding all the others. Which, as I said in ditching disability, is perhaps a really important political position, but not such a great description of the diversity of what might actually happen.

Intro: "Chumbado"

2010-11-11T13:19:00.000-08:00

As I've written, I'm distancing myself from the word "disability". But I need a word that can do some of the same things, and so I picked one that people used: "chumbado".

In calling someone "chumbado", I'm trying to isolate certain physical characteristics. My favourite definition of "chumbado" is that of a foot that doesn't leave the floor, and this is a limited but suggestive description of the corporalities I encountered.

All the people I call "chumbado" are physically disabled. But I might call someone not-chumbado who also has a physical disability, perhaps one that I don't know about.

Júlia, one of the group of friends that did swimming together, is the word's chief ambassador. "I can't bring myself to use another word", she tells me. She has to explain it to people, too: and she explains it as "something that went wrong", a word that's less "heavy" than "disabled". Not lifting one's foot off the floor is being "literally chumbado".

Similar to when Júlia talks about something going "wrong", the people I met routinely used ideas of aspects of their bodies being or getting "better" or "worse". I accept this, but in a limited way. I'm happy to say that an arm is better or worse, stronger or weaker than another: but I wouldn't be happy to say that being chumbado is better or worse than not being chumbado.

Using "chumbado" is a way of incorporating the "something that went wrong" while at the same time avoiding categories that block off explorations of the ways it might connect with other factors. I am using this definition to leave me free to see the different ways being "chumbado" plays a part in corporalities: ways that do not limit themselves to being "disabled".

I should finish by commenting briefly on this word's place in Brazilian Portuguese and its use by the people I met. "Chumbado" is a word that's used in many ways in slang in Brazil. "Chumbo" is lead, in Portuguese, and by extension, something heavy. "Chumbado" has, among others, colloquial uses of being (temporarily) under the weather, or drunk. I am taking a very specific usage from the people I met and some of the groups I am in. But not everyone who I met knows this word, and of those that know of it some actively dislike it.

Post modified Wednesday, 9 March 2011.

Intro: Ditching "Disability"

2010-11-09T17:41:00.000-08:00

My research started in terms of "disability", specifically physical disability. It was the word with which I've always identified myself informally, and then grew to be a category with which I interpreted my own corporality, and I learned a lot reading blogs that were related to disability in one way or another. (And at the time I wrote about it.)

My research was similarly in terms of physical disability. I told people I was studying physical disability, or how people lived with physical disability, or people with physical disability in Rio. And the way I met people was through these kinds of questions, and it's telling that I went to ACADIM partly because I've got a Muscular Dystrophy myself.

But, in my thesis, I want to put use of the word disability on hold. It's a word that carries a lot of baggage, emotional and theoretical. It's also a category that's used to make analyses independent of time, social class, nation and etcetera.

There's argument over whether a person is disabled by their body, or by society, or by some mixture of both. But the agreement here is that the body is somehow a valid unit to be talking about (often with an emphasis on what it can't do). Talking about "disability" is answering the question in the same breath that it is asked.

My study is of corporalities, and a large part of this is looking at how people's bodies are involved in mutual dances. Bodies exist in relations with the world so dense that it is sometimes difficult to separate them. My goal in this work is to find a way of talking about corporalities that isn't limited to "disabled" bodies but rather that applies more widely.

In not using the word "disability", I want to decentralize what would be thought of as the disabled body, seeing the bonds between objects, people and words. First we have to see the specific nature of these corporalities as I saw them in Rio de Janeiro before generalizing them to an abstract transnational "disability". I'm going to be using a different word to mean some of the same things: "chumbado".

"Disability", for me is a political and administrative term. I continue to use it in these contexts and am seeking employment that will treat it as such. But I do not feel it is always useful as descriptive label, or an explanatory one.

Post modified Wednesday, 9 March 2011.

Intro: The Research

2010-11-09T16:37:00.000-08:00

The research on which this work is based -- the fieldwork -- took place between March and July 2010, in Rio de Janeiro. I was based near where I lived -- in middle-class neighbourhoods of Grande Tijuca in the Zona Norte of Rio.

I started with, sometime last year, being given the contact ACADIM - The Carioca Association of Muscular Dystrophy. The association has about 150 associates with MDs, but no longer has events so actively. I got to know both the people on its committee and its associates. My tactic here was to arrange for a "conversation" -- they normally called it an "interview". In some cases the only time I met people was the interview, in other cases I developed strong friendships and got to know people over the five months of research.

One friendship in particular, that with Mateus, proved very fruitful. (I've changed people's names.) We soon joked that he was the "co-supervisor" of my thesis, given the number of his friends that he introduced me to, and the number of ideas we shared. The second group I interviewed and got to know were a group of friends that he introduced me to. They'd met doing adapted swimming a few years ago. While not many did it anymore, they'd stayed friends. I was adopted as the group's "mascot", and was soon going to restaurants, or the cinema, or watching Brazil's worldcup games with them. Among these friends some of us had forms of Muscular Dystrophy; there were two people with cerebral palsy; a woman who had had polio; and another who had had poliomyelitis.

Thirdly, and this was a lucky accident, at the end of May I went to visit the NGO Guerreiros da Inclusão, which Mateus and his friends knew. Their current activity is Wheelchair Rugby, and so I went to get to know their president during a training session. She starting saying I could play -- I said told her my arms are weak and I obviously couldn't push my own wheelchair -- she insisted, and so I gave it a go. Giving it a go I have been ever since, and the last part of my research was two months of training twice a week with this club. For me there was, and still is, something beautiful about the feeling of pushing one's chair over a smooth floor. Many people here had forms of quadriplegia (their arms had some paralysis); another had cerebral palsy.

For the sake of completeness, I should say I was also going to the beach every Sunday for my research. Praia Para Todos had an itinerant project on Rio's beaches. Much as some of my ideas were inspired by my time there, I don't really use this research apart from the conversations I had with one of the people I met there and became friends with. She had an initial diagnosis of Muscular Dystrophy which was then changed to Spinal Atrophy.

In short, from ACADIM and Mateus and his friends, I've a total of thirteen interviews, as well as extensive socialization. I did another interview with the president of Guerreiros, and with one of the friends I made at the beach project I had a very rich dialogue, in person and over email. Along with the interviews go my hanging about: "participant observation". I would get home (or to the bar) and frantically annotate what people had said and done.

Post modified Wednesday, 9 March 2011 and Saturday, 19 March 2011.

Blogging the Thesis

2010-11-09T16:17:00.000-08:00

I'm in the process of writing my masters' thesis for my course in Social Anthropology here in Rio de Janeiro. Friends who don't know Portuguese asked to see my work, and with that I realised writing in Portuguese was not the only problem they, or others, might have in reading my work.

The thesis is a dialogue with other (social and cultural) anthropologists: books that I've read, my teachers and friends. Reading it as a non-anthropologist is in one sense eavesdropping on a small part of a conversation, where by "small part" I mean the 50,000-word sprawl that is required for my qualification.

My reasons for blogging are to provide multiple translations. I want to give people who don't speak Portuguese a chance to know my work; I want to give bitesize formulations of the larger text; and I want to talk to people who are not social anthropologists.

In part, I hope for this to be a platform for informal exchanges that were going on anyway. And, time permitting, I'll try to post as I am writing.

I feel guilty for various reasons about not writing in Portuguese, and I apologise to those that this excludes. Ou seja, peço desculpas por não escrever em português. Disponho a vocês quem queiram a tese original. Especialmente lamento a exclusão de algumas das pessoas com quem eu fazia a pesquisa, e sem as quais não teria este trabalho.