CUIDAR: Cultures of Disaster Resilience Among Children and Young People

Disasters and emergencies each comprise unique and troubling entanglements of nature and culture, where climate change or social vulnerability greatly exacerbate how hazards and events are experienced. Cultural sensitivity is essential to effective disaster management and risk reduction practices, yet disaster plans still largely view affected people as victims and as a homogenous group.

Unfortunately, (with a few exceptions), children and young people are virtually invisible as active, engaged participants in national and international emergency planning processes for disasters such as extreme weather/flooding/wildfires/earthquakes and other human influenced environmental crises. Studies have shown that when they are mentioned, rather than seen as a resource, children are positioned as vulnerable recipients of aid and consequently problematic. Understanding children’s perspectives has been demonstrated by organisations such as Save the Children, to be a vital part of the process of building resilience: children are community members and citizens in their own right, and can play an important role in shaping more effective responses to disaster, locally, regionally and internationally.

CUIDAR means to take care in Spanish and Portuguese. It is a 3 year EC Horizon 2020 Coordination and Support Action involving partners in Greece, Spain, Portugal, Italy and the UK and a wide range of international advisory group members from Chile, US, Italy, New Zealand and Australia. It is also a collaboration between academics and the major international charity Save the Children. Through a series of work packages the project builds towards a European Framework for child centred emergency management with an emphasis on recovery and resilience.

CUIDAR’s participatory approach will encourage emergency plans which build on the experience and meaning of events in children’s lives and are badly needed at a time of increased vulnerability to disasters worldwide, not least due to climate change and the increase in more extreme weather events across Europe. The vulnerabilities to these disasters are numerous, ranging from direct impacts to floods, heatwaves, water shortage and landslides, to ecosystem-mediated health impacts including altered infectious diseases, food shortages, mental health and cultural impoverishment through to indirect impacts including population displacement and conflict.

We are proud of our project logo and of the images we’ve been able to use on our website. These were all produced by children in schools in Lisbon and the story of how this came about can be seen here. We are also committed to using creative methods as far as possible so our CUIDAR launch meeting, which took place at Save the Children’s offices in London, involved partners in 3D modelling about the role of children in disasters in their own countries.

CUIDAR consists of seven interconnecting ‘work packages’. After some initial scoping work partners will engage in a series of specially designed dialogues with children and young people in each partner country. These will be followed by mutual learning exercises with disaster policymakers regionally and then a period of national and international awareness raising events drawing on what has been produced through the CUIDAR initiative. The outcome will be a child centred emergency planning/disaster management framework for Europe.

 

For example, genetic data is no longer limited to clinical settings. Forms of DIY genetic testing offered by companies such as 23andMe provide opportunities for people to not only collect their own DNA sample and send it in for analysis, but also to analyse the results through online portals. Yet these alternative ways of engaging with genetic data have sparked concerns contributing to the withdrawal of parts of 23andMe’s DIY kits, as well as the creation of DIY genetic testing guidelines.

Our work contributes to these discussions by exploring the ‘social life’ of health data. In the case of consumer genomics, we explore how movement shapes and forms part of different genetic data practices, for example how saliva ‘translates’ or becomes genetic data. Within the field of ovulation biosensing the social life of data also involves movement. We focus on what happens when data moves from online forums where people discuss fertility and pregnancy into General Practice and then back again to the forum; how does data itself change and how does it gain or lose authority as it moves through different contexts?  While this movement of data can seem banal, it has an important role in shaping ideas about fertility and the reproductive body. For example, through measuring, monitoring and testing for ovulation every month, women experience trying for a baby as complex and scientific yet paradoxically fertility becomes more elusive and mysterious.  The social life and movements of data in these ways have important social consequences.

Our research has developed through engagement with both non-academic and academic groups. We worked with social scientists and engineers at Intel Labs in Oregon for a 6-week period, learning about their research projects and obtaining insights into the workings of a research lab in a large corporate organisation. During this time, we contributed to discussions on technology and social science from each of our areas of expertise, while also exploring how these areas criss-cross within the field of health-related biosensing.

Another important part of our work has involved organising and undertaking two citizens’ panels on health biosensors.  One of the citizens’ panels was a participatory inquiry into the topics of personal genomics and home reproductive technologies entitled ‘Our Bodies Our Selves’. We invited 15 participants and 4 expert witnesses to learn about the technologies we are researching, and provided an opportunity for the participants, who often did not know about the technologies in detail, to ask critical questions and respond to the social, ethical and technical questions they provoke.

The citizens’ panel offered a legitimate space within which to identify issues for debate and to offer recommendations to key actors involved in the development, marketing and regulation and consequences of those technologies. A key recommendation was that key actors in the development of technologies should be more upfront about data ambiguities, acknowledging and providing guidance on them.  Alongside our ethnographic work, which includes online observations and interviews with manufacturers and users of these technologies, the Citizens’ Panels have helped us to better understand the complex questions surrounding health data. In addition to this, by participating in such rich public debates and reporting our findings back to the groups involved, we hope to direct attention to the complex social challenges related to health biosensing.

- By Mette Kragh-Furbo and Joann Wilkinson