DECIDE
Disability and self-determination: the challenge of Independent living in Portugal

Period
June 1, 2016 to May 31, 2019
Duration
36 months
Funding Entity
Portuguese Foundation for Science and Technology
Abstract

Portuguese disabled people live in a situation of blatant social exclusion and in a social context which is oppressive of their specificities. The growing recognition of disabled people’s rights in the last decades, recently reified in the approval of the Convention on the Rights of Persons with Disabilities, is yet to be translated into a significant advance of social inclusion and participatory horizons. Therefore, the work that we will undertake in the Portuguese context accompanies the important role of Disability Studies in other countries in the consolidation of social transformative agendas.

The objective of this research project is to analyze the living conditions and the social inclusion of disabled people in Portugal in light of already consolidated international proposals under the concept of “independent living”. Independent living has gained international prominence as the advocacy of disabled peoples’ right to control over the decisions that affect their lives. It is about proclaiming the right to live in contexts freed from the logics of subjugation and dependence on family care or in institutional settings negligent to their voices and decisions over their lives.

To accomplish this objective we will critically analyze emerging proposals for a reinvention of living spaces that promote self-determination of this highly marginalized group. Confronting the dependency culture long established in Portugal, either in the community or in the institutions, we seek to collect the voices of disabled people producing critical readings bearing proposals for social emancipation.

The research will be focused on the analysis of the organization of residential living and support facilities, comparing the implications of the different modalities. To this end we analyze three groups. First, disabled people living in institutional contexts, be it a residential unit or nursing home (Case Study 1). Second, disabled people living in the community, with family or independently (Case Study 2). The third analysis group (Case Study 3) will consist of people living under the principles of independent living in Portugal. The Group 3 analysis will be performed taking into account a concrete experience that will be developed during the development of this research project - an independent living pilot project developed and funded by the Municipality of Lisbon. Within each of the groups we will investigate issues related to the decision-making process on aspects of daily life, individual autonomy, adequacy of support for individual needs and desires, participatory opportunities in community life and budget management.

This study consists of four stages. First, the analysis of relevant publications in the fields of disability studies, disability policies, independent living and project evaluation methodologies. The second stage includes fieldwork, including semi-structured interviews with disabled people, caregivers and care providers and management elements of the residential units, and discussion panels with NGO professionals and activists. The third step includes the production of the documentary and interpretative analysis of the data collected. In the fourth stage the work will be focused on dissemination tasks and in the preparation of the final report.

The team is experienced in investigating topics related to the disabled, social policies and project and policy assessment (Fontes, 2008, 2011, 2014; Fontes e Martins, 2014, 2015; Martins, 2010, 2013;Portugal, 2014; Portugal et al., 2014a e b; Pinto, 2014; Pinto e Teixeira, 2012a e b). It is a multidisciplinary team – disability studies, gender studies, social policies, social intervention and policy assessment, anthropology, psychology and sociology -, and includes researchers in several stages of their academic development, PhD studies and post-doctoral studies. In addition to a compared expertise resulting from the international experience of the research team, the project benefits from a thorough knowledge of disabled people’s Portuguese reality solidified from previous projects.

Outcomes

The expected results include 3 reports, 6 presentations in national and international conferences, 6 articles submitted for publication in national or international scientific journals, 2 international conferences with the participant institutions and consultants and a public access website. The team will also produce a documentary about Independent Living for disabled people in Portugal and a summary report of the main findings, to be presented to public and government bodies.
The project’ results, will assess the possibilities and advantages of a transformation of the living and support conditions of disabled people in Portugal. We will analyze the feasibility and sustainability of "independent living" in our society. We seek thus contribute to an appropriate and informed redefinition of disability policies in Portugal

Keywords
disability, independent living, social model of disability, disability policies