The Framing of Noma
What Purpose Do Frames Serve?
At the turn of the 21st century, medical professionals, non-governmental organisations (NGOs) and human rights bodies have made compelling cases for inter- and governmental action on noma, with the disease having been framed both as a pressing global health issue, specifically a neglected tropical disease (NTD), and an acute human rights concern.
Frames are communicative methods that ‘define problems’, ‘diagnose causes’, ‘make moral judgements’ and ‘suggest remedies’ (Entman). They are deployed to cultivate support and motivate action on a specific agenda (Benford & Snow). Framing theory therefore informs the Noma Project’s discursive and empirical examinations of current and potential framings of noma, facilitating insights into what manner of framing may most effectively address the prevention, (early) detection and treatment of noma and realisations of survivors’ rights.
Noma as a Neglected Tropical Disease
The international medical community’s activities on noma have broadly coalesced around the communication of the disease as a globally significant public health matter demanding expansive research, awareness and intervention (Baratti-Mayer et al; Farley et al).
This advocacy has oftentimes occurred in collaboration with NGOs, such as our project partners Sentinelles, Hifsaktion Noma, Winds of Hope and the No Noma Federation and Médecins Sans Frontières.
A key dimension has included more recent advocacy of noma’s inclusion in the WHO list of NTDs (Srour & Baratti-Mayer) - an interdisciplinary Task Force on the topic was established in 2017.
Studies strongly indicate that the formal recognition of noma as a WHO NTD could have positive implications for noma in terms of research, treatment and prevention (Ravinetto; Cismas/UN HRCAC). It could also transfer noma ‘from the medical field into the political domain’ (Iyorah) and therefore eliciti the attention of policy-makers and donors.
However, whilst an NTD framing of noma has been persuasively applied in theory (Srour et al; Ravinetto; Cismas & Adamou Moussa Pham), it is yet to be realised in practise.
Noma as a Human Rights Issue
International human rights mechanisms have developed and employed a human rights framing of noma.
In a 2012 study, t
he UN Human Rights Council Advisory Committee
presented noma as a cause and effect of numerous human rights violations, in particular of the child’s rights to health, food, water and sanitation, housing and education, as well as to equality and non-discrimination (
).
Annexed to the UN HRCAC study are the Human Rights Principles and Guidelines to improve the protection of children at risk or affected by noma. The UN Human Rights Council - the most important intergovernmental body dealing with human rights - has explicitly recognised this soft law instrument and encouraged States to implement it (HRC Res. 19/7).
The instrument has since been taken up by the UN Committee on the Rights of the Child in its review process of Ethiopia and Eritrea’s implementation of obligations arising under the Convention on the Rights of the Child.
And yet, despite these compelling framings of noma as an urgent global health and human rights issue, the disease remains largely neglected.
The inter- and governmental and interventions in existence are focused on a handful of African states, without any notable efforts in other African countries, Asia and Latin America. There is a need to theoretically and empirically investigate the framing of noma as a human rights issue and a neglected tropical disease, as this will yield enhanced understandings of the suitability, utility and resonance of employing certain frames of noma in diverse contextual circumstances.
Our Methodology
Investigation of noma’s framing demands a twofold approach to research:
Comparative desk-based research
The research team will first document systematically the framing of noma as a human rights concern and a neglected tropical disease (including overlaps of the two frames) by identifying the language and imagery deployed and conducting discourse analysis. A comparative perspective of framing of other diseases with similar characteristics to noma (e.g. leprosy) will be employed to explore how this was undertaken and whether/why it was effective.
Key informant interviews
Semi-structured key informant interviews will be carried out with participants from health and human rights representatives of affected countries and donor states, staff of intergovernmental organizations, expert human rights bodies, and relevant NGOs. The interviews will enable exploration of current knowledge of noma among key state and non-state stakeholders at local, national and international level, and specifically their interactions with the disease’s various framings.
Drawing on the two outlined methods, the analysis will assess successes in terms of communications, resonance and relevance of the existing frames in a discourse-based way, to inform future framing.