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`We are subjects, not objects in health' Communities taking action on COVID-19

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Key messages

This document co-ordinated by TARSC in EQUINET the Shaping health consortium, and with input from co-authors from nine countries provides evidence of practical and affirmative options of people-centred, participatory forms of community organizing and engagement in diverse areas of prevention, care and wider social protection in responding to COVID-19. The 42 case studies from different regions intend to inspire, inform and support.

The case studies are unique, diverse and rooted in widely different contexts and histories. In all, the people involved are subjects, full of life, with rights, ideas and rich experience.

They report the creative development and use of social media platforms for action across all areas of response, connecting people within and across communities and countries, giving voice and visibility to community experiences and linking people to key resources and services. They show the role of an ICT that supports problem solving and expression of marginalized voices. Simple tools, norms and standards, and open data facilitate creative community engagement.

The experiences show organization around symptom surveillance, testing, contact tracing and risk mapping, linking people to support and proposing feasible, less harmful ways of organizing risk settings or implementing lockdowns. Community volunteers have produced and distributed PPE and other health technologies; have self-organized medical, care and counselling support; and have organized food and other essentials for those in need, in ways that address psychosocial challenges and cultural and religious beliefs and that overcome stigma and social isolation. The initiatives have linked small scale farmers to household deliveries for food security, provided food through communal gardens, kitchens and 'people's' restaurants and supported access to emergency lodging, benefit schemes and safe water.

They demonstrate that a compassionate society enhances public health. While not without challenges and reversals, they are solution-focused and use their actions to negotiate and lever the resources and relationships that they expect from the state.

Many build on histories, ideologies, structures, organization and relationships that began long before the pandemic, enabling a relatively rapid response to new challenges posed by COVID-19 and with an intention to sustain relevant innovations after the pandemic.

They reach to socio-economically disadvantaged groups within communities, especially where organizing processes were participatory and democratic, strengthening collective organization, investing in capacities and leadership and making links with more powerful groups to address local priorities and negotiate delivery on state obligations.

They build new relationships between communities and producers and between communities and health workers, and solidarity interactions with international agencies and diaspora communities. The relationships built show the value of productive capacities, economic and system interactions that were previously ignored. While some are a response to imposed measures insensitive to community realities, in others the state, especially at local level, provided enabling conditions and resources and was responsive to local initiative, especially where state capacities were decentralized or autonomous. In responding to deprivation or deficit, there was a caution not to take over state duties, nor to be dominated by the state, and an observation from service workers that community organization and advocacy is what makes the state move.

The challenges presented by the pandemic are creating demand and space for innovation, and in many settings communities are rising to that demand. The mobilization of affirmative community effort and creativity needs to be recognized in the story of the 2020 pandemic.

We hope that the case studies inspire the proactive efforts of other organizations and communities. They also carry a consistent message: The response to COVID does not need to generate fear and coercion. It can be inclusive, creative, equitable and participatory. We suggest that co-production and co-determination with affected communities are not an optional 'add-on' to COVID-19 responses. They are fundamental to a successful response.