The invitation to each of us was a pleasant surprise. It came via email and described an upcoming event to be held in São Paulo, Brazil in June 2013. The conference was called Conflitos, Direitos e Diversidade - I Simpósio Internacional de Estudos sobre a Deficiência 1, which translates to The First International Symposium on Disability Studies: Conflicts, Rights, and Diversity (http://diversitas.fflch.usp.br/sied). This was the first international disability studies symposium organized by the Office of State of São Paulo, under the direction of Dr. Linamara Rizzo Battistella, Secretary of State for the Rights of Persons with Disabilities. The conference sought to bring together academics, activists, and students to engage each other within the interdisciplinary framework of disability studies, with the initial intent of making it an annual event.
The offer to attend and present intrigued us. We would represent the international community who work within disability studies, have an opportunity to share our work with a different and arguably wider audience, and have the opportunity to learn from the work of Brazilians who grapple with our common areas of interest. In many ways, the conference was "high profile," deliberately foregrounding disability studies as a means to re-think current policies and practices. At the same time, because it was state-sponsored, we were interested in ways Brazil was contemplating the usefulness of disability studies in shaping its institutions that serve, represent, and advocate for citizens with disabilities.
So… after long flights from various parts of the U.S. and the U.K., we arrived in São Paulo just before the conference began on June 19, 2013. The city itself is the most populous in the Southern Hemisphere, with approximately 20 million people and has the raw energy only found in a large metropolis. As we checked in to our hotel, a TV behind reception showed people protesting around the country—in Brasília, Rio de Janiero, Recife, Fortaleza and other locations—about rising taxes, inadequate public services, and the skewed priorities of politicians intent upon preparing the country for the World Cup in 2014 and the Olympic Games in 2016. In many ways, this backdrop conveyed a vibrancy of democracy at work, and was referred to throughout the conference—including mass demonstrations that paraded past the hotel, conference center and airport.
The event itself reminded us of the annual conference held by the Society for Disability Studies (SDS) in the U.S. There were approximately 300-350 people in attendance with reports of having organizers to turn applicants away due to an unexpected high level of interest in the event. The event was jam-packed and humming with excitement! Accessibility was provided for all participants in the form of CART captioning, sign language interpreters, programs in Braille, physically accessible venues, language interpreters, and so on, accommodating the same kinds of (sometimes-conflicting) access requests that we have seen over the years at SDS. In addition, simultaneous translation was provided in both English and Portuguese. There were five plenary sessions—in which each one of us was scheduled to present as part of a panel. In addition, there were almost one hundred thematically grouped papers in breakout sessions. Altogether, the presentations reflected an incredible range of topics and related research that responded to the following questions/issues originally posed in the call for papers and also published in the program:
The list provides an insightful snapshot into current topics of interest by the disability studies community in Brazil.
Not knowing quite what to expect, as invited speakers David and Gideon chose areas that we felt would provide our newfound Brazilian colleagues with ideas, tools, examples, and thoughts around using Disability Studies. Pam and Mike had been given specific assignments and requested to speak on certain topics. Finally, Nick's role was to synthesize the entire conference proceedings and capture elements of debates. In this section we share a brief overview of our presentations, and briefly explain our rationale.
In this presentation I explained the recent growth of Disability Studies in Education (DSE) in both the U.S.A. and around the world using three lenses of past, present, and future. In doing so I engaged with main topics of this conference—conflicts, rights, and diversity: What are the main conflicts between the traditional field of special education and DSE? Whose rights are advocated and whose rights are challenged by DSE? Why does DSE assert that disability is integral to understanding diversity in schools and society? By considering these questions, we see how DSE currently contributes to theory, research, practice, and policy—and the potential it holds to dismantle oppressive beliefs and practices through creating a broader understanding of human diversity.
I chose this topic because I was not sure if there was a network of scholars working within Disability Studies in Education in Brazil. I did not wish to assume anything. On the other hand, I was eager to share some accomplishments to date of those who work in this area—including how to strategize to maximize the circulation of ideas, build alliances with other disciplines and sub-disciplines, and connect disability issues to broader issues of social justice. Scholars around the world working within DSE often also describe themselves as critical special educators because their original chosen profession was to work with infants, children, adolescents, and adults identified as having a disability. As a network, we have come together since 2001 at an annual conference to share ideas, present scholarship (often in progress), and strategize how to engage with educators about the concept of disability without defaulting to the reigning paradigm of special education founded upon pseudo-science, medicine, and psychology that posits individuals with disabilities as deficit-based (for more information on the history of DSE conferences, see Connor, in press). It is my sincere hope that Brazilian scholars of DSE will join their international colleagues at our next annual conference, tentatively scheduled for Melbourne, Australia, in June 2014. http://www.vu.edu.au/news-events/news/disability-studies-in-education-conference-2014
My contribution focused on disability politics as a social movement, and in particular, at questions concerning how disability, and persons with disabilities, are represented. These questions are vital within the Movement for the Rights of Persons with Disabilities. For such a movement must represent what disability is like, and the needs and aims of persons with disabilities, in as inclusive a way as possible. But the questions themselves can be tricky to address. Does the establishment of a category of 'persons with disabilities' make it easier to identify shared, coherent needs and goals among the full diversity of persons there included? To what extent do the objectives of this Movement overlap with other social movements?
My lecture explored these issues in the context of broader recent debates on the politics of recognition and the pursuit of what Nancy Fraser calls "participatory parity" of marginalized groups and individuals. This seems to me a particularly fruitful line of approach, as Fraser's ideas cross over between epistemic questions (Are 'persons with disabilities' really a group? Are there shared interests definitive of 'disability'?) and political questions (How can the voice of persons with disabilities best be articulated, and heard? How do disability-related issues relate to other sources of disadvantage?). Achieving 'participatory parity' involves overcoming social arrangments which prevent individuals from 'participating on a par with others in social life'. This seems to me a vital component of the aims of the Rights Movement in practice, in Brazil and elsewhere (see Calder 2011). Even so the goal of participatory parity has complex dimensions — economic, cultural and political. The conference as a whole, it seemed to me, represented a working-through of many of those dimensions — constantly moving between very specific, particular questions concerning certain kinds of disability and wider emancipatory themes reflecting the imperatives of the movement at its broadest, and the broader structures of contemporary societies. All social movements, to realize their progressive potential, will move constantly between these levels, relating individual stories to the wider shaping contexts of the time. What's crucial is to keep these different dimensions in touch with each other, and not (for example) to neglect political economy or what Fraser calls 'the politics of redistribution,' in the quest for a political voice.
In May 23rd-24th of 2011 Francisco Ortega and I organized the "First International Symposium on Disability Studies" at the State University in Rio de Janeiro. For the plenary in São Paulo, I ended up creating a new presentation that continued the autobiographical discussion introduced in Rio in 2011. The presentation still discussed biosociality, biological citizenship and autistic identity, but it focused upon a personal account of how my sister, my mother and I experienced over four decades of professional theories and practices concerning autism, how we participated in autistic advocacy and activist movements, and how current debates and divisions between professionals, parents, and autistic activists continue to shape local and international experiences of autism.
The abstract in the program is as follows: Autistic identity in Brazil and elsewhere provides an example of emerging biosociality/biological citizenship. Conceptualizations of autism have also been shaped by historical, political, social, and cultural differences, such as ethnicity, gender, age, socioeconomic status, and national origin. Biomedical conceptualizations have framed the concept of autism since the mid-20th century, but the primary focus of this presentation will be the growth of parent advocacy movements — beginning in the 1980s — and autistic citizenship movements centered upon the ideas of neurodiversity and Orgulho Autista (Autistic Pride) — beginning in the early 2000s.
Another product of the 2011 Symposium presented in 2013 was the presentation I co-authored with Anahi Guedes de Mello and Adriano Henrique Nuernberg: "Estudos sobre Deficiêia no Brasil: pasado, presente e future" (2013a). Versions of this presentation were also presented as "Disability Studies in Brazil: Past, Present, and Future" at the 2013 Society for Disability Studies Meetings in Orlando Florida (2013b), scheduled to be published (Mello et al. in press). In São Paulo, we discussed how disability studies in Brazil emerged through individual scholarship in the 1980s and 1990s, featuring scholars such as Sueli Satow and Rosana Glat (who was mentored by DSQ founder Irving Zola). In the early 2000s, it emerged in small research nuclei under the leadership of scholars such as Debora Diniz at the Instituto de Bioética, Direitos Humanos e Gênero at the University of Brasília, and Francisco Ortega at the Institute of Social Medicine at the State University of Rio de Janeiro. In the current decade Disability Studies has reached a new and convergent stage with the development of both the smaller Rio de Janeiro symposium in 2011 and the larger-scale São Paulo symposium organized in 2013.
Having created their own MEMORIAL DA INCLUSÃO (http://www.memorialdainclusao.sp.gov.br) or "INCLUSION MEMORIAL" in São Paulo, the organizers of the conference were interested in learning more about the Museum of DisABILITY History located in Buffalo, New York (http://museumofdisability.org). In addition to being an Assistant Professor in the Department of History at the University at Buffalo (UB), and the Director of the Center for Disability Studies at UB, I am a consultant to the Museum of DisABILITY history. The organizers of the conference asked specifically that I use museum content to explore the city as a site of contestation for rights, especially the U.S. in the last 100 years. Using both virtual and permanent (physical) museum exhibits, and other materials available at the museum, I focused on the role of media in not only the protests of disabled people, but also the public perception of disabled activists. While considerable and very important work has been done, I argued that the media, in most cases remains understudied and undertheorized by historians of the disability rights movement in the United States and abroad.
In addition to thinking about the role of media and memory, I provided conference participants with some basic information about the museum, its history, its content and its plans for the future. One of the highlights for me was our tour through the MEMORIAL DA INCLUSÃO, an impressive interactive array of exhibits located in a modern building in the heart of São Paulo. Funded by the state, this museum is impressive in both the depth and the breath of its exhibits, which explore primarily the modern international disability rights movement and the social and cultural achievements of people with disabilities in São Paulo, in Brazil, and abroad.
Before we left, the conference organizers kindly took us to visit the museum. This large, circular museum features videos, artifacts, testimonials, and histories of people with disabilities, several of whom were presenting at the conference. All of us were impressed by this museum—especially by the well documented, moving stories of activists who forged forward, in times of political turmoil during and immediately after Brazil's most recent military dictatorship, to establish disability rights within Brazil. But the museum offers much more than just a history of disability rights in Brazil. Interesting and interactive cultural exhibits highlight one's experience at the museum. The museum offers a virtual tour in Portuguese, English, and Spanish, and can be accessed at www.memorialdainclusao.sp.gov.br. More information on the history of Brazilian disability rights movement is available through a 2010 book and DVD set, available online at: http://www.pessoacomdeficiencia.gov.br/app/publicacoes/historia-do-movimento-politico-das-pessoas-com-deficiencia-no-brasil.
The clear and over-riding message from this symposium is that disability studies in Brazil is vibrant, strong and powerful. Scholars and others working in the field are challenging biomedical approaches to the study of disability and seeking to overturn traditional deficit approaches to resolving the problems faced by disabled people and helping in the emancipation of disabled people. Key to this development has been the close ties between activists and academics. In Brazil the disability studies community is comprised of not just academics but also activists, as well as those who provide services for disabled people and policy makers, and all are working together trying to develop new, inclusive approaches and shared ways to take on the challenge of disablism. In the opening address we were reminded of the importance of ensuring that academics work closely with disabled people and their organizations, that we learn from each other and that disabled people's perspectives should be privileged in setting the research agenda. Videos of the disabled peoples movement were shown and a keynote address by one of the founders of the Brazilian movement left us in no doubt as to where the movement had come from and how the ideas that support it had emerged.
There are clearly tensions between and within these various groups, as became apparent at times during the symposium, most notably during the very lively debate held at the end of the symposium on the future of disability studies in Brazil. Much of this debate focused on what is and what is not disability studies and discussions on how disability should be theorized, debates familiar to many of us. These differences are to be expected and perhaps should be encouraged; a healthy discipline is one that is open to debate and one where it is possible to challenge existing paradigms without fear. There is, after all, no single way to represent disability or no single approach that best captures the lives of disabled people; disability is complex and multidimensional and as such requires a plurality of approaches.
The papers presented by the Brazilian academics in the symposium covered a broad variety of topics ranging from an historical genealogy of madness in Brazil to the representation of deafness, the experience of blindness, of living with the effects of leprosy, violence against disabled people, the heterogeneity of the disabled experience, ableism as well as discussions on education, public policy and new social movements. People drew on ideas drawn from a wide variety of different disciplines, approaches and theories and the depth of analysis and the strength of the papers presented was impressive. Whilst many of the speakers drew on a range of different theorists the majority of papers drew on the ideas found within what may be loosely termed Critical Disability Studies (CDS). Cultural approaches to the study of disability predominated and many of the papers attempted to deconstruct ideas about disability and explore the discourses that surround disability. What was lacking was a more materialist account of disability, one that examined the material structures that serve to exclude disabled people and deny them access to rights. The relationship between disability and poverty was unexplored as was any discussion on social care or on strategies for achieving independent living, absences that were all the more surprising given the fact that every night of the symposium tens of thousands of people marched past the venue demanding an end to poverty and calling for, among other things, better access to health care.
Much of the debate within the symposium on special education focused on labeling and how this impacted on young disabled people's identities. However in a country where we were told that only 1% of children are so labeled and that large numbers drop out of school because they do not have access to reading glasses (WHO 2010) perhaps greater emphasis could be placed on the provision of good services for disabled children. It might be argued that for many of these children it is not labeling that is the problem, rather it is the absence of labeling, for without labels it is often hard either to prove demand or for the children to access appropriate services.
Here we are not trying to critique the excellent work that we heard or the quality of the research, rather we are trying to engage in constructive dialogue with our colleagues in Brazil and work together to help create a new and vibrant way to take disability studies forward.
After three long, productive days of papers, presentations, and public discussions, the conference came to a close. During the last day, there was a feeling of satisfaction that so many people had come from all over Brazil to engage with one another on issues about which they deeply cared. In addition, there were some healthy, spirited disagreements about the state of disability studies in Brazil, the types of formats that might be best for the development of the new area of study, and the need to emphasize the social model(s) of disability and challenge the authority of traditional medical, educational and rehabilitation models—especially within institutions responsible for knowledge production about disability. Although this was the first conference on disability studies organized by the State of São Paulo, activists referred to conferences organized within academic contexts, such as the one in Rio de Janiero in 2011 and the disability studies section organized within the Brazilian Anthropological Association. As within the U.S. and the U. K., disability movements and their relation to disability studies, it struck us how Brazil is experiencing the push and pull of competing needs and ideologies that is at the heart of a healthy democracy.
As mentioned earlier, this historic meeting coincided with the beginning of a national movement of protests that initiated in São Paulo. Some of us saw and heard protesters on arrival and subsequent nights, viewing evidence of them both clashing with and peacefully coordinating with the police. Some of the conference staff participated in the protests after work. By the end of the conference demonstrations had expanded from the downtown area to block São Paulo's international airport. Plenary speakers Pamela Block and Lívia Oliveira spent over 5 hours stopped in traffic. They finally left their ride behind and walked through smoke and diffused tear gas, groups of protesters returning home, military police, and army personnel to finally arrive at the airport. It is important to note that soon after, the disability rights movement in Brazil organized protests that coordinated with the general protests while focusing on disability access issues ("Manifestação: cidade acessível é para todos! 7 de Julho, 2013").
As fascinated as we were by the momentous events happening outside the São Paulo convention center, we were equally captivated by the historic discussions taking place inside the meeting rooms. For we five international participants, who had the honor and privilege of attending and presenting, witnessed first-hand the growing interest in disability studies as a fast growing area of study in Brazil. Having begun with isolated research produced by individual scholars from 1980s through the early 2000s, disability studies in Brazil is becoming galvanized with the help of the 2013 Symposium and other such gatherings. In sum, Disability Studies in Brazil has blossomed into a convergence of activists, academics, artists, and policy-makers. Already, a second conference has been planned in August 2014 by the same organizing body in São Paulo.
It is our hope that we have contributed in some small way to this growth, and realize that the struggles of activists and academics in Brazil to re-think and re-cast disability as a form of human diversity—not an aberration—are both similar to those in our own countries and yet also unique to Brazil. Importantly, we experienced disability studies as an international phenomenon that continues to expand and flourish. Just as Brazil invited us to share our work in disability studies, we encourage readers of Disability Studies Quarterly to explore the exciting work of Brazilian activists, academics, artists, and policy makers.
Author note: We would like to thank: Dr. Linamara Rizzo Battistella, Secretary of State for the Rights of Persons with Disabilities; Ana Lúcia Segamarchi, Advisor for International Relations at the São Paulo State Secretariat for the Rights of the Person with Disability, and all of their conference staff who extended their hospitality to us during our stay.