“Living with Disabilities”: An anthropological contribution to public policies

Disability Studies is a new, but nonetheless vital, area of research in Brazil. With almost two and a half million poverty-stricken Brazilians receiving government stipends for chronic physical and mental impairments, scholars as well as government administrators face the challenge of providing adequate support to a great number of people and their families in order to guarantee basic rights of well-being. Although Brazilian health-care professionals with mostly biomedical training have long been active in this field, only recently have social scientists begun to bring their perspectives to the complicated assemblage of cultural, social, and economic issues involved. Guided by Dr. Schuch,the social scientists of this research project, all of whom have research experience in matters related to disability, mean to pool resources in order to plant the seeds of a Brazilian national research network for disability studies that joins practical policy issues with the insights provided by contemporary anthropological analysis, directed toward the well-being of people “living with disability”.

“Living with Disabilities” is coordenated by Professor Dr. Patrice Schuch (PPGAS/UFRGS) and Sahra Gibbon (UCL). The project is co-hosted by the Graduate Program in Social Antropology (PPGAS) at the Federal University of Rio Grande do Sul (UFRGS) and the Anthropology Departament at University College London (UCL).

About the project

The struggle for Human Rights and citizenship has historically been a process of inclusion and exclusion, whereby different groups seek recognition of their fundamental rights, both as human beings and as citizens. It is through their political activism that people with disabilities, a historically excluded group have conquered visibility and affirmed their rights in various countries, including Brazil. In 2008, the Brazilian legislature incorporated the UN Convention for People with Disabilities (2006) as a constitutional law, and the Brazilian Law of Inclusion — also known as the Statute on Persons with Disabilities – was promulgated in 2015. Although these laws are both relatively complete and encompassing, it is crucial to understand how they have – or have not – been implemented as public policies.

Notwithstanding the progressive legislation described above, responsibility for the everyday well-being of people with disability in Brazil generally falls to individuals or their families, with little or no support from the government. It is thus crucial to take seriously feminist theory affirming “the private is political” and to think of disability not only as it takes part in public agendas, but also as it is experienced in the “intimate arena of kinship” and other forms of day-to-day sociabilities (Rapp and Ginsburg 2011). People with disabilities, seconded by their family members, worry not only about leading a relatively autonomous existence, but also – and perhaps more strongly — about guaranteeing this relative autonomy in the future when their family networks (particularly, with the demise of their parents) may no longer be available. In this sense, the question of how adults with disabilities “fit in” to society – how they satisfy their basic health needs, how they receive education and training, how they manage a gainful employment, where and with whom they live – is a vital and multifaceted concern. This preoccupation contrasts with the (until recently) lack of public attention directed toward the implementation of accessibility infrastructures, work opportunities and alternative living facilities. A careful look at these issues will enable a better understanding of how laws are enacted and experienced in people’s everyday lives, especially as they relate to the challenges faced, the objectives aimed for, and the resources accessed by adults with disabilities and their support networks.

We define “people with disabilities” as those with impairments of a physical, intelectual or sensorial order who, when in interaction with the many barriers imposed by society, see their full participation and interaction with others obstructed (Shakespeare, 2014; Diniz, 2012). This purposely broad definition enables us to think through policies for different categories of the disabled, focusing on questions such as: access to higher education, integration into the labour market, provision of adequate health care (diagnosis and treatment), and viable living arrangements (involving various forms of family and community networks). Rooted in the notion of biopolitics, our analysis pretends to address how people with disabilities engage in the processes of ‘being-made’ and ‘self-making’ in everyday life (Foucault, 2012; Rabinow& Rose, 2006; Ong, 2003). Following a method outlined by Shore and Wright for the analysis of public policy, we intend to map out existing policies through the examination of their scientific premises, their forms of implementation, and their effects in terms of the relations they produce and the modes of thought with which they interact. Empirically situated in a ‘global assemblage’ (Ong & Collier, 2005) of Inclusive Development, our research also traces the connections among relevant international and national agents, shedding light on wider contemporary political questions, such as transformations of the modern State in the process of re-democratization and citizenship-making, processes of judicialisation of health care rights, and the emergence of new modes of government and power relations (Ong, 2003; Biehl 2013).

The role of biomedicine in shaping how rights and citizenship coalesce is particularly marked in the Brazil context given the constitutional right to health in a social arena where there are stark health inequalities and access to health care is uneven. The growing phenomenon of judicialisation of health in Brazil further underlines this specificity (Biehl 2013). The question of how the interface between biomedicine and identity unfolds as variable forms of biosociality (Rabinow 1996, Gibbon and Novas 2008) but also in relation to questions of biolegitimacy (Fassin 2009) in Brazil is na arena of emerging research (do Valle and Gibbon 2015).While a focus on neglected or rare genetic disease is extending the parameters of this arena of inquiry in Brazil (Gibbon and Aureliano 2017), there is still important work to do in further understanding how fields of science and medicine dynamically shape and are also informed by the social worlds and lives of those with disabilities.

Our common approach is built around ethnographic involvement in concrete situations, with an emphasis on the lived experience of those most affected by “disability” – including the “disabled”, their families and caretakers, and the experts with whom they interact. Fieldwork, to be carried out in different empirical contexts throughout Brazil (with Porto Alegre as our pilot study), will include: a) the documental examination of public policies for the disabled; b) semi-structured interviews with public policy agents, experts from different scientific fields, University professors and students, business managers and State agents; c) participant observations in the learning environments, spaces for therapeutic intervention, and collective associations, as well as the homes of people with disabilities. It is through an intense program of workshops and conferences open to the general public that we hope to consolidate a network of researchers, pooling experiences, and strengthening the contribution of qualitative studies to the formulation of public policies.

Context-specific factors highlight the analysis of technologies of government that influence not only how disability is perceived or dealt with, but the very notion of what disability is (Ingstad and Whyte, 1995). This line of inquiry should contribute to the theoretical debates about disability in Brazil and the UK., and hopefully encourage a wider debate on public policies designed to ensure a better future for disabled people and their families.