Daniela E. Miranda & Manuel Garcia-Ramirez

Universidad de Sevilla, Center for the Study of Health, Power and Diversity

The unfair distribution of the social determinants of health has led Roma communities to live in extreme poverty across Europe. It has been widely recognized that Roma civil society organizations are essential in efforts to improve the situation. Organizations have successfully promoted programmes that have increased Roma access to healthcare services, assisted local health authorities in implementing programmes, accompanied users to navigate relevant public services and provided information through health campaigns. This has made organizations valuable to the community and given them a protagonist role at the policy level. However, there continues to be persistent challenges for organizations in order to make significant changes that address Roma health inequities.

These pending challenges are related to structural and operational barriers that maintain antigypsyism in political, social and economic spheres. First, organizations endure a balancing act between guaranteeing their space at the policy and institutional levels, while staying committed to communities that they represent at the local level. Roma civil society organizations’ representation has been obstructed by instrumentalization in various institutions. In some cases, institutions have utilized organizations to maintain the status quo by obligating them to utilize a traditional provider-user models with communities. Since many organizations depend on public funding to survive at the political level, organizations are forced to compete with one another for limited resources. This trap implies an obligation to implement these types of programmes that are not always suited to communities while creating a system of dependency – organization dependency on public funding for resources and organizations assuming initiatives that create dependency between them and the community.

Following recommendations by the Open Society Foundations and the European Commission, organizations should promote spaces that give Roma civil society the capacity to advocate for social changes and represent themselves. This shifts the traditional paradigm of organizations from providing services into safe settings where communities, including the most silenced and hidden groups find resources. Organizations should incorporate elements into their agendas that ensure opportunities for communities to develop new roles and skills, increase relational support system, define shared goals that inspire change, adapt to emerging challenges and participate in advocacy efforts.

We propose a set of concrete actions that can help organizations incorporate these transformative elements. Firstly, future initiatives should encourage a stronger network of larger and smaller civil society organizations. This ensures an increase in networks that helps to legitimize group experiences, increase collaboration and define shared goals in the face of limited resources.

Secondly, civil society should partner with multiple stakeholders to advocate for Roma health across multiple settings, for example, local policymakers, public services providers and research institutions. We recommend partnering with research institutions since it is an opportunity to systemize local evidences for advocacy and share noncompetitive resources. These types of partnerships will increase trust between Roma civil society and institutions to fight antigypsyism.

About the Center for the Study of Health, Power and Diversity

The group is involved in the implementation of transnational project in partnership with academia, civil society and Health organisations from Spain, UK, Bulgaria, Romania and Hungary focusing on gender discrimination and reproductive rights. The project targets vulnerable women and girls and aims to prevent teenage pregnancy increasing the risks of domestic violence, school dropout, unemployment, or mental and physical ill-health. The project is based on the principles and tools of Participatory Action Research processes designed by multidisciplinary experts at multiple levels that entail evidence-based and discursive-based approaches.

The Center has recently published an article titled “A Community-Based Participatory Action Research for Roma Health Justice in a Deprived District in Spain” in the International Journal of Environmental Research and Public Health Special Issue of Roma Health Disadvantage. The article focuses on different social determinants affecting health and provides specific analysis of the role of structural discrimination in access to healthcare services with concrete examples from a case study conducted in Spain.




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