The WHO Collaborating Centre on Global Health Histories supported by the Wellcome Trust has produced a series of seminars and webinars looking at the different ‘narratives’ of Ebola, and how this disease is a prime example of neglect in the global health context.
The full seminars can be seen and/or listened to here:
Haemorrhagic fevers: The deepest fears (GHH seminar 41, 12 May 2010)
Speakers: Professor Melissa Leach, Director of the Institute of Development Studies based at the University of Sussex; Asiya Odugleh, Alert and Response Department, WHO
Ebola: exploring the cultural contexts of an epidemic (GHH seminar 91, 8 October 2015)
Speakers; Zsuzsanna Jakab, Regional Director for Europe. WHO; Jeremy Farrar, Director of the Wellcome Trust; Guénaël Rodier, Director of the Division of Communicable Diseases, Health Security and Environment at the Regional Office for Europe, WHO; and Dr João Nunes, lecturer in International Relations, University of York.
This briefing draws on the speeches and material presented at those seminars, as well as additional material from and discussions with Dr João Nunes.
Ebola is not new. It was first officially identified and named in 1976 and successive outbreaks since then have killed thousands of people in different African countries. The virus has mutated between different outbreaks, which is one reason why the disease has consistently defied attempts to contain it fully – but this is certainly not the only reason. “The frenzy about Ebola was not accompanied by a systematic engagement with its broader context or the different degrees of vulnerability to it,” says Dr João Nunes, Senior Lecturer in International Relations, University of York.
Instead, Ebola is at the centre of myths and misconceptions – most of which portray the disease as somehow a terrifying inevitability, rather than the result of assumptions and decisions about who matters and who does not in terms of global health. “As a multidimensional, complex reality Ebola has been neglected,” Nunes says.
The myth of the dark continent
Ebola is undeniably frightening. It is transmitted through bodily fluids, and the symptoms include haemorrhage, kidney failure, lesions, and high temperature; it is highly lethal, with mortality rates of between one in four and nine out of 10; and it progresses very quickly, from first symptoms to death within a couple of weeks. There is currently no vaccine or antiviral treatment. On the other hand, it actually kills far fewer people than Lassa fever, which has a minimal mortality rate by comparison but is much more widespread. Professor Melissa Leach, Director of the Institute of Development Studies based at the University of Sussex, points out that Ebola is an “exceptional” or “master status” disease, which inspires a dramatic level of fear – on several levels.
Part of the reason for that status is the idea that Ebola is a disease that originated in dark African forest, perpetuated and spread by people and customs that are different, foreign, other. In fact, according to this narrative, the people who live in the areas where Ebola breaks out actively spread the disease further, through what they eat and what they do – so not only are they victims but they are perpetrators.
“Ebola is linked to ‘exotic African practices’,” says Nunes. “It’s heavily racialised; it cannot be separated from the persistent anxiety over certain types of groups.” Alongside that, he adds, there is “the underlying racist narrative which depicts the entire African continent as a homogeneous entity, a place of despair and helplessness. A place where things like Ebola ‘just happen’, because it is not possible to implement effective governance.”
The myth underpins and justifies an idea that Ebola outbreaks are, fundamentally, unavoidable tragedies. Yet the reality is that the outbreaks happen in regions that have been rendered vulnerable because of political, social and economic decisions.
Customs and practices
Social customs do play a part in increasing the spread of Ebola. Some of these are associated with traditional healing, involving blood and unsterile knives. Others, though, are more about a refusal to maintain distance from the sick person (which has very obvious parallels with the arguments in other parts of the world over masks and/or social distancing during the COVID-19 outbreak).
And in fact, some practices fit in very well with other medical beliefs about how to contain the spread of an outbreak. Leach points to the Acholi people in Northern Uganda, who isolate patients, encourage people to stay in their own homes, and keep people who have recovered within their homes for a further month. All these measures are completely in line with what Leach describes as “the biomedical cultural model employed by international teams”.
Guénaël Rodier, former Director of the Division of Communicable Diseases, Health Security and Environment at the Regional Office for Europe, World Health Organization (WHO), also points out that traditional healers and funeral practices are not the only reasons for the spread of Ebola. “More importantly it is amplified by hospitals and the health system. With all large outbreaks, the health system plays a major role in the amplification of the disease.”
Ebola stories
Leach identifies four different Ebola ‘stories’ – the versions of the disease and its context that all contribute to how this disease is considered and treated as a global health emergency. They vary according to who is telling the story; how the ‘problem’ is defined; who or what is considered responsible for the problem; whose knowledge is valued; and what strategies are considered useful in tackling the problem. “In looking at stories you can begin to clarify some of the choices and cast sharper light on how to go about some of the practical issues.”
The first is the global threat – the plague which emerges from Africa (that dark continent) and needs to be stopped from spreading across the world. Much of the worry is about how a virus that comes from ‘over there’ can come to affect ‘us’, and indeed people often talk as if the virus has some kind of agency of its own. This is the model that has underpinned much of the international perspectives on outbreaks. “Ebola is an archetype for this ‘outbreak narrative’,” says Leach, pointing out how much of the response to Ebola has been motivated by fear. This is also the story that we have seen played out in fiction and in film (most recently in the film Contagion, which was watched by countless people in lockdown in the spring of 2020, as cities emptied and the death tolls climbed). In the fictional versions there is usually a medical solution where the white-coated (and usually white) scientists finally conquer the threat.
The second is the one of deadly local disease events, and mounting a rapid response against them, which has gained more traction in recent years. The emphasis here is on containing a short-term and local – though deadly – outbreak. The local people are again mostly ignorant and/or misguided, perpetrating dangerous practices; and authority (and the solutions) lies with what Leach terms the “standardised technical response package” of isolation, contact tracing and barrier nursing.
The third is based on culture and context, and reverses some of the assumptions in the other two models to put the people and communities that are affected by the disease at the centre. Ebola and similar diseases are, after all, not new, and people have built up knowledge and medical/cultural practices that may well overlap with the practices that of other medical disciplines (like the Acholi strategies of social isolation). Even when the local practices are in conflict with ‘mainstream’ medical approaches, they cannot be overridden without thinking.
Finally, there is a narrative of mysteries and mobility, which has been evolving since around the mid-1990s. This is in some ways a group of different stories, bringing together the environmental-social-animal-disease-ecological systems that are all associated with Ebola; from migration to political systems to climate change. Leach describes it as “a much less coherent narrative” but also “very exciting”, as it draws attention to a whole variety of overlapping issues that drive the spread of the disease.
These last two narratives move away from the top-down, standardised responses to Ebola (and other diseases) which many people in the area resist in any case, because these is imposed on them whether or not they agree. The last, importantly, also moves away from seeing Ebola as a solely medical issue. All too often, says, Nunes, Ebola “is framed as an African problem that requires surveillance and containment. The focus is on preventing infection and containing disease, which runs the risk of overlooking the broader context that makes the crisis possible in the first place. Crucially, there is almost no attention on the wider social and political context.”
Nunes brings in another perspective; that Ebola is part of the “complex issue of neglect in global health”. Neglect, as he defines it, maybe the failure to care about an issue at all, or the failure to take address it adequately – either because it isn’t considered sufficiently important, or because the action that is taken is not competent and/or adequate. “It’s about a moral landscape and a political arena in which effective political solutions are not imagined or mobilised.”
Neglect, he explains, doesn’t somehow emerge on its own; it is the result of the context and the culture, the assumptions about the disease and the people that are affected by the disease. ”At the crux of the production of neglect, it is always possible to locate human agency and choices. Issues are rendered invisible because certain actors follow certain purposes. Neglect should not be considered mere invisibility, but rather a process of making something invisible and denying an adequate response.”
And emotion plays a very strong part in this too. Ebola is associated with people that are thought of as “alien, outside the sphere of moral obligation, disgusting, beyond the possibility of any moral improvement”. They have become effectively invisible; their needs and suffering don’t count as much as the needs of people who somehow ‘count more’. It’s not that Ebola gets no attention or sympathy. But it is depicted as a strange and frightening disease – one which hits the headlines briefly and then drops out of public focus. “The same forces that made it trending contributed to its construction as exotic.” It is treated as an emergency – time and time again – when in fact it is the result of a set of endemic, rooted problems.
Local resistance
“Ebola is not a rare event,” says Jeremy Farrar, Director of the Wellcome Trust. “It is a series of epidemics – and with each, we have failed to respond. We need to have systems that can prepare for it and act.” “It is possible to control outbreaks without sophisticated tools,” Rodier adds. “It is people-centred. Each contact is a person and needs to be on board, and to break the chain of transmissions need to know who has been in contact and follow them up. It is not highly transmissible.” Yet many people who are all too well aware of the devastation that Ebola can inflict refuse to comply with the advice and the practices imposed by medical staff.
That can be partly because other diseases – HIV, malaria, water-borne disease and others – are often endemic in the areas where Ebola breaks out; and in practice, these may be more of a priority for local people. But it’s also the case that some of the things people are asked to do, in order to prevent or treat Ebola, can be distressing and/or can clash with their usual beliefs and practices. Leach cites an outbreak in Gabon in 2001, where villagers actually mounted an armed resistance to medical teams because in previous outbreaks sick and dead people had been taken to isolation units and there was a fear that their body parts were being stolen. Rodier gives the example of young male Red Cross workers removing bodies, in a culture where women are usually in charge of healthcare and the care of the dead, and putting them in black bin bags whereas the colour associated with death is white. Sometimes a team of health workers has arrived ahead of an outbreak which was spreading towards a locality, even before the disease itself, so it looked as if they themselves were responsible for the sickness and deaths. People distrust the motives of what they perceive as ‘the Ebola business’; their own ways of doing things are being ignored; and at the same time, the shame and stigma about Ebola and people who survive Ebola is also still a very powerful social issue. “When you look of the typology of the resistance, it was perceived as fighting ‘a war against us’, in the belief that the international community was spreading the disease,” Rodier explains. “Sometimes you can understand why they believed it.”
Changing and uniting
“If I have suggestions, it would be about drawing some of these narratives together,” says Leach. They all have elements that can be useful: and in practice they interact and evolve together in any case. Leach suggests, in particular, integrating the ‘outbreak narratives’ with those of longer-term, endemic disease; the global perspective with the local; and sustaining the focus on culture and context, while extending it to include the “environmental dynamics” of disease.
The narratives are changing, too. The world in which Ebola breaks out today is a very different from the world of the 1976 outbreak. “The virus has not changed dramatically,” says Farrar. “What changed is the cultural context.” People are moving at an unprecedented rate, and moving from villages into cities and from cities across the world. “Societies are different, the way in which societies work together is different, the way individuals behave is different. So we have to think forward not backwards and look at the world as it is today and will be in the future.”
As part of this, health systems and services need to do things differently as well, he argues. “Health systems around the world were established in an era of infectious diseases when relatively young people got ill, came into the hospital, and either recovered or died. The new world is very different. The dreadful tragedy of Ebola gives us an opportunity to redefine how we do things. The 21st century will bring challenges we’ve never faced before but we are also at the dawn of a golden scientific age. We should not be separating, we should be pulling together, including with the clinical solutions.”
“We need alternative framings of Ebola that consider power inequalities, the relations between groups and the production of harm, vulnerability and structural violence in the international sphere. It is frustrating going over the same debate each time instead of thinking more systematically about the status quo that seems to accept that crises will occur and human ingenuity will get us through,” Nunes concludes. “We get unnecessary suffering, unnecessary deaths and millions in wasted resources. We are not united by contagion. We are divided by the global structures and relations that create the privilege of some and the vulnerability of others. Swift decisions are important but short-term policies shouldn’t be the sole focus of global health governance. We need first and foremost a strong political commitment.”
Radhika Holmström is a writer and communications specialist working with the Global Health Histories project at the University of York.
No comments:
Post a Comment