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.