Léo Ramos Chaves / Pesquisa FapespSandro Matas in the former São Paulo School of Medicine, now UNIFESP, where he has worked since the 1980sLéo Ramos Chaves / Pesquisa Fapesp
My father taught me never to rely on anyone. I’ve fallen a million times, but I always get back up by myself. I don’t like people helping me. My father once said that the day I fall and can’t get up on my own will be the day my life is coming to an end.
I had infantile paralysis when I was 6 months old. My parents didn’t want to put me in a special school for people with disabilities or for me to use a wheelchair, because they knew it would make it difficult for me to do the things I needed to do. They also insisted to doctors that I walk with orthopedic braces and a cane. I managed to adapt well.
At first, I wanted to study computing, then I thought about engineering and nuclear physics, but my father wouldn’t allow it. He wanted me to study medicine and ended up convincing me. I decided to focus on neurology, to try to understand what had happened to me and perhaps research something that might improve the lives of other people with paraplegia.
I enrolled at the São Paulo School of Medicine [EPM], now part of the Federal University of São Paulo [UNIFESP], in 1979. At that time, nobody was talking about accessibility. But I never complained either. Wherever there was a course that interested me, I went. If I had to climb stairs, I went more slowly, but still I went. There were four flights of stairs to reach the library. Whenever I visited, I would spend six hours studying because going up and down was so difficult. Colleagues occasionally brought me books.
I always had a lot of doubts about the profession. About whether I would be accepted by the public as a doctor. Whether people would have confidence in my ability to care for them. Whether I would be able to work as a surgeon. I knew I wouldn’t be able to operate with one hand on a cane, for example—I would have to use a wheelchair and be dependent on the nurses. And I didn’t want to be dependent on anyone. I did a two-year course in surgical techniques, but in the end, I chose clinical medicine.
Neurology appealed to me as an undergraduate and I really liked infectious diseases too. During my residency at Hospital São Paulo, I began working shifts collecting cerebrospinal fluid (CSF) from patients’ spinal cords. I spent my life doing lumbar punctures in the laboratory that I now manage. Cerebrospinal fluid is a precious source of information about neurological diseases, from infections to tumors and autoimmune diseases. I fell in love with it. I must have done more than 200,000 punctures over the course of my career.
Neurologist João Baptista dos Reis Filho, my boss at the time, encouraged me to study and supervised me for my master’s and PhD. During my master’s, I discovered that many patients with the AIDS virus contracted cryptococcosis, an infection caused by a fungus common in pigeon feces. The risk was greater because of their lower immunity, but many died without being diagnosed. With the CSF test, it was possible to detect the infection in time to do something about it.
During my PhD, I investigated cases where paraplegic patients had inflammation of the spinal cord associated with a rare type of schistosomiasis. There were few reports in the literature. I discovered that many of the patients became quadriplegic because the origin of the inflammatory process had not been correctly identified and the schistosomiasis was left untreated. My research helped neurologists become more aware of the issue.
I started working at EPM after finishing my residency in 1988 and continued after it became part of UNIFESP in 1994. Today, in addition to the CSF lab, I am head of neuroinfectology and intracranial hypertension at Hospital São Paulo. I help train residents, teach new students, and carry out research in these fields.
José Guerra / DCI-UNIFESPFreshmen participate in a soccer match as part of UNIFESP’s inclusion team-building in 2011José Guerra / DCI-UNIFESP
In 2008, I was asked to organize the university’s newly created center for accessibility and inclusion. The government had decided that all federal educational institutions needed to provide a certain level of accessibility and inclusion for all students, with funding on offer to make the necessary adjustments. I assembled a multidisciplinary team, composed of people who specialized in various disabilities.
We created a complete overview of the university’s infrastructure—there was a lot of work to be done. Once, when I broke my foot and had to use a wheelchair for two months, I couldn’t access the building’s bathrooms. The only one with a door wide enough for me to get through was in the directors’ offices. Around the same time, I suffered a fall while trying to enter the university. There was no ramp, just steps, which is obviously unacceptable. We had to make a lot of changes so that everyone can move around the building freely. Not only students, but also doctors, hospital patients, and their families. I fought a lot. There was no elevator for wheelchair users to get to the university auditorium, for example. When they did install one, they put it at the top of two flights of stairs. The only alternative was to go around the block and enter the building through the garage, where there was another elevator. But the garage door was always closed.
The most interesting thing is that other problems became evident that no one was paying attention to before, including in relation to academic programs. Who can study a certain course? Can a blind person practice medicine? How can a deaf person take classes? Can a paraplegic person be a physical educator? These are uncomfortable questions, many of which were unanswered. I started demanding that all courses be adapted to people with disabilities. Some of my colleagues told me there was nothing they could do if the university didn’t provide the necessary conditions.
We did team-building activities on inclusion for several years. Students had to go around the block in a wheelchair, or blindfolded, to see how difficult it was to get around with limited mobility or without sight. I took the students to play ping pong with their disabled classmates who I knew from a club we played at. We organized soccer matches with the blind, with all participants wearing blindfolds.
The current quota system guarantees places at universities for people with disabilities, but we need a program for early identification of students whose performance is compromised due to their disability. If some of their difficulties could be resolved sooner, they would be just as capable of going to university as other candidates. Quotas are like a medicine that offers an immediate solution to the disease, but a prophylactic approach would be better, identifying disabled people sooner and guiding them past the obstacles they face.
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