A University of Sussex DPhil thesis Available online via Sussex Research Online: http://eprints.sussex.ac.uk/ This thesis is protected by copyright which belongs to the author. This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the Author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the Author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Please visit Sussex Research Online for more information and further details Speaking for the People: Representation and Health Policy in the Brazilian Amazon Alexander John Ludovic Shankland A dissertation submitted in fulfilment of the requirements for the degree of Doctor of Philosophy of the University of Sussex Institute of Development Studies University of Sussex August 2009 (resubmitted with minor corrections May 2010) UNIVERSITY OF SUSSEX ALEXANDER JOHN LUDOVIC SHANKLAND DPHIL DEVELOPMENT STUDIES SPEAKING FOR THE PEOPLE: REPRESENTATION AND HEALTH POLICY IN THE BRAZILIAN AMAZON SUMMARY This thesis examines representation, a key but relatively neglected issue in contemporary democratic theory, through an ethnography of engagements between indigenous representatives and the state in the Brazilian health sector, which has pioneered the adoption of participatory and deliberative “new democratic spaces”. Part I, “Locating Representation”, argues that contemporary debates that privilege the creation of new democratic spaces as a response to the shortcomings of representative democracy ignore the importance of these spaces’ own issues of representation. The section goes on to outline the context for the research (which was conducted at the national level and in two sites in the Amazon region), describing the process of action research and multi-sited ethnography. The main body of the thesis makes the case for developing a situated understanding of three dimensions of representation: the representation of issues for political debate and policy deliberation; the representation of different social groups in relation to the state; and the representation of the process of democratic engagement itself. Part II, “Representing Health” examines the contrasting understandings of health expressed by two groups of policymakers and bureaucrats – those managing Brazil’s national health system, the SUS, and those responsible for the Indigenous Health Subsystem of the SUS – and by shamanic practitioners and other indigenous health experts. Part III, “Representing People” examines the discourses and mediation roles of indigenous representatives operating in new democratic spaces, and the contrasting representation strategies of two regional indigenous movement organisations who took on management of outsourced services within the Indigenous Health Subsystem. Part IV, “Representing Democracy”, examines three cases of indigenous representatives’ engagement with the state through new democratic spaces in the health sector, and concludes by analysing the potential for new approaches to representation to contribute both to the political inclusion of marginalised minorities and to the broader reinvigoration of democracy. Acknowledgements This thesis was completed under difficult circumstances, and the fact that it has come to be submitted at all is thanks to the understanding and flexibility shown by the Economic and Social Research Council and the University of Sussex in granting me an emergency extension, as well as the vigorous and unfailing support of my supervisor, Professor Andrea Cornwall. I would like to acknowledge the responsiveness of Lisa Boulton (ESRC), Penny King (SPA/UoS) and Julie Carr (SOCCUL/UoS) during this period. Special thanks are due to Angela Dowman (IDS) and Maggie Pryer (UoS), who have always been helpful and supportive, not only during the recent crisis but throughout the years in which I have been working towards the completion of this DPhil. I owe Andrea a deep debt of thanks not only for her friendship and support during this period but for her sometimes unconventional but always brilliant supervision, for encouraging me to trust my writing instincts and above all for helping me to believe that I could do it. Thanks are due to the ESRC not only for showing flexibility over the delayed submission of this thesis but also for making my research possible in the first place by funding my studentship, my fieldwork in Brazil and my Overseas Institutional Visit period as a visiting researcher at the Centro Brasileiro de Análise e Planejamento (Cebrap) in São Paulo in 2007, as well as providing the opportunity to present part of my work at the UK-Brazil Workshop on Economic Restructuring and Social Equality in São Paulo. Thanks are also due to John Gaventa, Jo Wheeler, Georgina Powell- Stephens and Graeme MacGregor of the Development Research Centre on Citizenship, Participation and Accountability (Citizenship DRC), which provided invaluable support to my fieldwork through a grant that covered part of the costs of my action research project with Saúde Sem Limites (SSL) in Acre; their flexible and generous support for this project and for my participation in international meetings and workshops ensured that I was able to make the most of the privilege of being a Citizenship DRC researcher after doing my stint as a Citizenship DRC manager. The work included in this thesis has been immensely enriched by discussion with Citizenship DRC colleagues, especially Bettina von Lieres, David Kahane, Sandra Roque, Simeen Mahmud, Chris Tapscott and other Deepening Democracy in States and Localities Working Group colleagues who provided feedback at the Citizenship DRC workshops in Sussex (March 2007) and Cape Town (May 2008) where I presented earlier versions of the Acre case material. Equally valuable inputs have been provided by Vera Schattan Coelho, Cristina Pompa, Frê Menino, Arilson Favareto and other Cebrap Núcleo de Cidadania e Desenvolvimento colleagues during numerous discussions, in addition to the insightful comments from Sérgio Costa, Adrián Gurza Lavalle and other participants at my visiting researcher seminar at Cebrap in São Paulo (September 2007). In the UK, Tony Bebbington, Willy McCourt, Marcus André Melo, Newton Sérgio Lopes Lemos, Jason Lakin, Fabiana Saddi and other participants in the seminars on ‘Explaining Brazil’s Policy Successes’ (IDS, July 2005) and ‘Politics and health policy in Brazil, Mexico and the UK’ (Oxford Centre for Brazilian Studies, December 2005) provided very valuable feedback on earlier versions of the material on the SUS and Brazilian democratisation. At IDS, thanks are due to Peter Taylor, Rose Nierras, Anne-Marie Goetz, Robert Chambers, Janine Hicks and other colleagues who gave helpful comments after my Research Outline and Work in Progress seminars, and to my fellow IDS DPhils (especially my office-mates Julián Salazar and Larissa Jones and my Participation Team DPhil colleagues Hernán Gómez Bruera, Kattie Lussier, Tobias Denskus and Naysan Adlparvar) for useful discussions, friendship and solidarity. As I explain in Chapter 1, the research carried out during my “official” fieldwork period was complemented and enriched by other work in Brazil that took place both before and after this period. In the immediate “pre-DPhil period” I benefited from the opportunity to conduct preliminary research in the Rio Negro that was provided by the “Olhar Crítico” project, funded by DFID Brasília and managed by ActionAid Brasil, and from discussions with Sue Fleming (DFID), Jorge Romano (ActionAid) and other Olhar Crítico colleagues, as well as István Varga, Issô Truká and other participants in the Olhar Crítico book launch seminar in Recife in April 2008. In the “post-DPhil period” I have learned a huge amount from working with Gerry Bloom, Marcos Pellegrini, Ivone Menegolla, Eliana Diehl, Carolyn Stephens, Juliana Rosalén, Armando Raggio, Paulo Morais, Liz Ollier, Geraldo Biasoto, Luciana Teixeira, Rômulo Paes de Sousa, Marta Azevedo, Henry Lucas, Georgia da Silva, Itagiba Campos Filho, Danilo Paiva Ramos, Ana Beatriz Miraglia, Cissa Oliveira and other colleagues on the VIGISUS II consultancy team during a process that was ably supported by Demian Nery, Dídia Souza and Geraldo Virgínio of SSL and Jan Boyes in the KNOTS Team at IDS, as well as from discussions with indigenous representatives, district managers and health workers at project workshops and with Joana Godinho (World Bank) and the members of the FUNASA Steering Group at project meetings and seminars. Both my “official” fieldwork and the subsequent VIGISUS II work owe a considerable debt to Luciana Benevides (Projeto VIGISUS II / FUNASA), who has been a valued interlocutor for my national-level research and an efficient, helpful and insightful partner for the consultancy project. I am also grateful to Luciana for enabling me to participate as an observer in the 4th National Indigenous Health Conference, to Artur Custódio of MORHAN and the National Health Council for welcoming me as an observer to the 12th National Health Conference, to Zilmar Cândido da Silva and Oswaldo Leal for inviting me to the 5th Acre State Health Conference, to Senator Tião Viana and his advisors Adriana Mariz and Carlos Rebello for making it possible to hold the Acre research findings presentation at the Federal Senate and to Carmem Pankaruru and Ademir Gudrin for inviting me to attend the meetings of the