The right to health: Supporting marginalised people living and working in urban informal spaces

By Rachel Tolhurst, Shrutika Murthy, Lana Whittaker, Prasanna Saligram and Surekha Garimella

‘Our rights, your accountability’ was a slogan used by social accountability practitioners from around the world at the COPASAH Global Symposium. Human rights are a fundamental underpinning of many people’s movements to demand accountability for health equity. But how do we understand rights to health? Who can we hold accountable to ensure that the right to health of marginalised people living and working in urban informal spaces in the Global South is realised? These are questions we have been grappling with in ARISE.


Rights to health

The UN Charter for Human Rights and Covenant on Economic and Social and Cultural Rights enshrine the right to health in international law. This extends beyond healthcare to the ‘underlying determinants of health’ and is therefore indivisible from other human rights such as the rights to food, water and shelter.  Many of the struggles discussed at the Symposium focused on claiming the right to healthcare, which was a priority for community-based activists.  However, we also heard powerful testimonies of how biomedical models of health that have been imposed as part of imperial, neo-colonial, patriarchal and neo-liberal regimes may be experienced as a form of violence. For example, how they have damaged and undermined indigenous and traditional models of health such as Latin American models which are grounded in the natural, social and spiritual world or care for women in childbirth provided by dais in India.

A more holistic understanding of health and well-being, in line with the WHO definition of health, is rarely pursued within ‘basic packages of care’, which focus on preventing mortality.  A wonderful performance-based discussion on well-being facilitated by Anita Santhanam, reminded us of the need to find a common language to express our wider well-being (or ill-being) and to embrace and promote the care dimensions of healthcare and the multiple processes that are needed to promote well-being.  ‘Colonised’ hierarchies of knowledge in global health, such as the dominance of the ‘gold standard’ of randomised control trials, may detract from efforts to find consensus about health between marginalised people and the people who are accountable to them.

The right to health also relates to freedoms such as the right to control one’s own body, including sexual and reproductive freedom, and the right to be free from interference, such as being free from torture.  At the Symposium the sexual and reproductive rights of women and girls, women’s control over their bodies and freedom from gender and sexual violence were prominent topics.  These rights should be protected by the state, but also involve the development of stronger accountability processes within communities. We need to find ways of ensuring that we are accountable to each other as human beings to treat each other non-violently, with respect for bodily autonomy and dignity, within families and communities, without this detracting from the struggle against more remote institutions and states.

Who is accountable?

The UN Committee on Economic, Social and Cultural Rights stated in 2000 that nation states have a three-fold obligation to respect, protect and fulfill the right to health, but also that actors beyond the state have obligations in this regard. These include health professionals, local communities, civil society organisations, and the private business sector.  Most of the movements celebrated at the Symposium focus on increasing the accountability of the state for their obligations towards citizens.

Marginalised people in urban informal spaces often face challenges in making rights claims to the state. For many, ‘informality’ means that they lack state recognition of their right to live and work in the city and thus their rights to housing, clean water or sanitation. This lack of formal citizenship often undermines their eligibility for entitlements such as food rations or access to health services. Institutions of the state may nonetheless be present in their lives to some extent, sometimes in malign forms, including in police harassment and caste-related stigma and discrimination in health services.

State capacity to fulfill its obligations may also be weak due to neoliberal reforms leading to a skewed understanding of what it means to be a responsive state. Whilst states have an obligation to continuously move towards realising the right to health, many lack both the will and capacity to do so. In many contexts the democratic space and legal basis for rights claims is also shrinking. Lines of accountability are also being re-drawn due to neo-liberal globalization, with accountability flowing towards global capital.

In urban informal spaces, many non-state actors (people and institutions) create a complex web of governance and service provision, supplying water, toilets, electricity, dispute resolution and health services, usually outside of the regulatory reach of the state.  How do marginalized people hold these actors to account for their obligations to respect, protect and fulfill their rights to health, in the absence of a legal framework of entitlements? Are there more direct social or political bases of accountability that can be leveraged?

In ARISE we aim to learn more about what people already do in practice and how to strengthen this. One of the exciting things about the COPASAH Symposium was the large number of accountability practitioners sharing their experiences.  One such strategy was moving beyond an adversarial approach to working with healthcare providers. To see them as allies with whom social accountability can be built, on a foundation of community solidarity.

Women and providers working together

In one of the ‘practitioner huddles’ at the Symposium, conversations revolved around the barriers in accessing quality health services and the methods that were adopted in order to overcome them. Historical and cultural process were held responsible for deep-rooted biases within health systems and how these perpetuate the exclusion and marginalisation of certain communities. The lack of a tradition of ‘accountability’ within the government further complicates matters – as very often government officials are themselves unaware of the law and their associated obligations. It was argued that it is not the mere existence of a law that is important but its implementation.

Women, along with some of the community health practitioners, explained how indigenous women are discriminated against and mistreated at health facilities because of their cultural beliefs. Indigenous women are penalised for not giving birth to their children at health facilities and threatened with the prospect of their children not being ‘registered’ as citizens.

Women and practitioners also emphasised the importance of taking a people-centred approach and building the capacities of vulnerable communities, to effectively monitor health policies and services. Communities have been trained in accessing information, understanding government structures, collecting evidence from the field and advocating their demands to different stakeholders as part of this process.

Whose rights?

The UN declaration of Human Rights states that “All human beings are born free and equal in dignity and rights”, yet intersecting inequalities and power relations from the global to the local level undermine this.  Many people living and working in informal urban spaces experience extreme marginalization and discrimination because of multiple intersecting identities such as caste, class, ethnicity, disability, religion, sexual orientation and gender.

The ‘social suffering’ related to being ‘othered’ and not afforded the dignity of being fully human is an important dimension of ill-health and ill-being.  A critical aspect of strengthening social accountability is the realization of the rights of people ‘marginalised by design’ to freedom from discrimination, violence and to full societal participation.  Many inspiring examples of feminist, anti-caste and egalitarian approaches to building social accountability movements were presented at the Symposium.

Lessons from intersectional politics also stress the importance of identity-based movements through which oppressed people create new, ‘de-colonised’ identities, realising their ‘power with’ and ‘power within’.  In ARISE we are grappling with questions of how to support such identity-based movements as well as promoting the inclusion of the most marginalized within broader social movements that may be required to hold the powerful to account.  We are standing on the shoulders of the many giants of accountability practice we had the privilege to learn from at the Symposium.

Photo credit: The image was taken by Rachel Tolhurst and shows Anita Santhanam’s performance on well-being at COPASAH