Neoliberal policy, chronic corruption and disablement: biosecurity, biosocial risks and the creation of ‘Ebola survivors’?

Abstract

In this article, I question where ‘disability’ has been in humanitarian discourses and practices linked to the Ebola epidemic. Policy and practice have generally focused on issues linked to biosecurity in relation to West Africa but not on creation of disability linked to breakdown of health systems. Those same discourses of containment and biosocial risks are now being used in relation to people who have survived Ebola but have disabling symptoms.

Keywords:

• Ebola
• disability
• humanitarianism
• Ebola Survivors

Understanding a disabling Ebola humanitarianism

The current Ebola epidemic began in December 2013 in the West African country Guinea, and then moved to the neighbouring countries of Liberia and Sierra Leone. Ebola, a haemorrhagic fever, is highly infectious and spread through contact with bodily fluids. The symptoms of Ebola consist of fever and severe internal bleeding, with people’s survival rates often correlated to the timeliness of medical treatment and efficacy of health care system. In West Africa, over 26,000 people have been affected by Ebola and roughly two-thirds of this population have survived (World Health Organisation [WHO] 2015). It is only recently that a possible vaccine has been found to be successful (Henao-Restrepo et al. 2015), and the epidemic finally seems to be coming under control.

Despite this, popular discourses linked to Ebola have generally focused on new ‘global risks’ (Beck 2015), for instance presented by climate change, with links to conflict and pandemics and thus needed humanitarian containment for biosecurity. Or they have focused on individuals, whether West African people, communities or even international health care professionals, as ‘risky’ in terms of how their behaviour could spread Ebola and present threats to an illusionary global ‘biosecure’ form of citizenship. They have rarely focused on global inequalities and international policy in creation of the new ‘global risks’ that we face, or correlation to disablement of states and people. The historical processes of colonialism and post-colonial contribution to creation of inequalities that have led to conflicts or epidemics like Ebola, and connections to racism in who survives, have received inadequate attention (Benton and Dionne 2015).

The way in which Ebola was able to spread so quickly was linked to myriad local and global factors, such as the initial slow response by an ill-equipped WHO to a humanitarian emergency, as well as proximity of countries to each other with close cultural, social, historical, economic and political links. Yet of primordial importance was the fact that Liberia and Sierra Leone are low-income countries rebuilding from civil conflicts, and in the case of Guinea from recent political strife. This is similar to countries that have had past outbreaks, like the Democratic Republic of Congo, Sudan and Uganda. In these countries, international organisations and non-governmental organisations (NGOs) have largely been responsible for aiding local governments in rebuilding. In order to rebuild, low-income countries such as Guinea, Sierra Leone and Liberia need to take out loans from the World Bank and the International Monetary Fund. These often have certain conditions attached in terms of how economic development should occur. As such, they are almost an extension of the structural adjustment programmes of the 1980s but are now called Poverty Reduction Strategy Papers. Governments and civil society are now meant to participate in setting the agenda. In practice, this now increasingly occurs according to neoliberalism. This is an economic policy that advocates the rolling back of the welfare state, deregulation, free trade and privatisation of state services. Additionally, most aid goes to multilateral organisations like the World Bank, the International Monetary Fund and the United Nations, whereas bilateral aid, going directly to local governments, is scaled back and increasingly conditions are being applied.

Countries recovering from conflicts do not have the necessary capital to implement fully functioning health and social care systems and must go into partnership with the big international organisations and governments, but also voluntary organisations, religious organisations or NGOs, ‘who can provide the infrastructure, procurement, technical training and social care services that are missing’ (Berghs 2013, 274). These services are built up in silos, according to funding trends, with little understanding of connections between health, what ‘disability’ means culturally and its links to inequalities. The big donors often focus on public health concerns that have huge private and philanthropic investment, such as HIV/AIDS, which do not reflect the health needs of local populations or the creation of impairment and disease. In the West African context, key causes of death, impairment and illness are linked to malaria, diarrhoea, infections, diabetes, neglected tropical diseases, malnutrition, anaemia, genetic conditions like sickle cell and hypertension. They also interact with the legacy of conflict and the impact of uneven development and poverty, in violence, alcohol, drug and mental health issues. Impairments are also increasingly linked to traffic accidents, injuries, environmental degradation and industrial accidents.

Private–public partnerships ensure that some health services are being rebuilt but this is conditional on access to natural resources, new markets, influence and thus economic gain (Berghs 2013). Overall these services are being built in delimited terms because they do not link health into better transport, housing, sanitation, education and rebuilding of robust democracies. A two-tiered system develops where basic hospital infrastructure and conditional access to medications is there, but the other public health frameworks are missing. This means that the smaller and specialised NGOs often have to fill in the immediate gaps, such as providing disability, surgical and acute mental health services but within funding cycles that are usually short term, insecure and disallow any long-term and sustainable planning. This is within an overall system of poverty and inequality that leads to chronic corruption and restricted success in rebuilding robust health systems.

Inequalities and Ebola: where was disability?

Instead of multilateral and bilateral planning and investment in social welfare systems, social protection and insurance schemes, formal or informal payments are required for access to healthcare – if people can gain access to it at all. Even when governments have given free access to health care it has been conditionally implemented. For example, in Sierra Leone health care was free for pregnant women and children under five (Berghs 2010), yet pregnant women related that within overall contexts of poverty they still had to ensure informal fees or bribes to health care professionals. Health care professionals could not survive on their salaries and needed to get those topped up in some way. Sometimes their salaries were not paid.

Disabled people also related discrimination and were fearful of government hospitals, which they felt lacked medicines, professional staff and where they might be left to die.¹ Some disabled people, especially living in the rural areas where transport is an issue, tried to access indigenous cures, medicines in pharmacies and faith-based or spiritual healing if they became ill. Victims of the war also highlighted the lack of reparations and planning in terms of their long-term needs within health, social and rehabilitative services (Berghs 2013). They felt this was unjust and had led to illness, more impairment and early deaths. Overall, most people relied on specialised charities, international aid, delimited government services and on community, family or local healers, and thus also disproportionately on the female gender and children to ensure caring tasks, especially if they became ill or disabled (Berghs 2013). All Sierra Leoneans also became used to dealing with public health crises, such as the cholera epidemic of 2012. The WHO was involved because the epidemic affected over 25,000 people, began in the Freetown slums and also spread to Guinea. Health crises are early indicators of inequalities that exist in society and often act as warning signs of other issues, such as lack of robust public health and acute care systems. Yet questions were not raised about changing the status quo in terms of the way in which global and local policy linked into creation of illness and impairment, caused deaths and could cause further health crises. There seemed to be a total disconnect between global policy and the local realities of policy implementation. Why was this the case?

In 2008 the WHO published a report on social determinants of health where links between death, disease and impairment were made to inequalities. Marmot and Bell (2012, S4) explain how the social determinants of health ‘include the conditions in which people are born, grow and age, and the fundamental drivers of these conditions: the distribution of power, money and resources’. Inequalities also lie at the root causes of conflict, destabilisation, environmental destruction and violence, and thus addressing global and local inequalities in policy and practice, in a culturally sensitive manner, is fundamental to rebuilding peaceful and thus more socially just societies (Berghs 2015). International health policy is now supposed to advocate the connection between robust health systems and assurances of equity in society.

The United Nations Millennium Development Goals explicitly focused on poverty, and the cyclical links between poverty and disability have also been made (WHO 2011). Yet in both the planning and rebuilding of health and social care systems and understanding of those inequalities, the correlations to poverty, mainstreaming of disability and need for specialised services linked to local needs seemed to be absent. Similarly, when trying to understand how the Ebola outbreak could have happened and spread so rapidly in West Africa, the policy focus remained on health systems. A deeper understanding of how global and local policies tackling public health, and thus inequalities, got it so wrong remained absent. It was noteworthy that rather than focusing on the disabling outcomes of the breakdown of health and social care systems, such as interruption of vaccinations for babies or lack of healthcare for overall population, the focus was on using the health system to contain Ebola. Yet even within those discourses of acute containment, there was not much thought given to gender or disability mainstreaming. The gendered consequences of caring tasks are well known, but there was very little emphasis on understanding how to integrate gender, or children, within messages about Ebola prevention, care and containment. Even less attention seemed to have been given to ensuring mental resilience of population while the epidemic was occurring. Within discourses of prevention of Ebola, how people who have impairments or caring responsibilities were expected to keep themselves and their communities safe was seemingly neglected. It was not clear how messages about Ebola were reaching disabled people. How would public health ramifications in terms of lack of access to education, transport, employment and so on affect disabled people? The focus seemed to be mainly on Ebola and the links to stigma as disabling, rather than focusing on how to combat creation of disability due to lack of access of health, and ensuring disability mainstreaming in health systems and public health viewed more broadly.

Biosocial survivorship, vaccines and biosecure citizenship?

According to the WHO (2014), the thousands of people who have survived Ebola now have symptoms with undiagnosed causes of impairment. There have been reports that the virus can still be present in survivors months after they are ‘cured’ and how Ebola can change physiology, such as eye colour (that is, Sifferlin 2015). Understanding the impairment sequelae and medical connection to the virus, such as vision and memory loss, joint pain and linked psycho-social issues, across the life-course, remained neglected by the WHO, in favour of setting up support groups to help people cope with stigma (WHO 2014). They also warn that the future public health ramifications of the Ebola epidemic on health care professionals and communities remains unknown (WHO 2014). The possible psychiatrisation of West African states in terms of Ebola trauma is left open.

Ebola ‘survivors’ are now the foci of scientific interest and have been recruited in clinical trials (randomised controlled trials) to develop new vaccines. Because of the scientific and humanitarian importance of ensuring a vaccine, it is noteworthy that ‘Ebola survivors’ have become a medicalised and ‘exceptional’ category of identity, in line with global biological and humanitarian interest. Yet they, like all global citizens, require medical care and social support. Now that a possible vaccine has been found and the epidemic might be drawing to a close, we need to ask critical questions and link health (mental and physical), right to healthcare and recovery within broader democratic debates.

We need to shift western discourses of risk and blame away from West African states and survivors, and examine the global and local structural processes that lead to illness, disablement and death, and the fuelling of several health crises in post-conflict states. This should help us to understand how to ensure health and social care services can be rebuilt to ensure culturally sensitive disability mainstreaming. This now also involves understanding how public health is linked to fighting inequalities and rethinking past policy. We have to say no to a discriminatory humanitarianism, whether it occurs in the Global North or the Global South.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. Fieldwork notes, Sierra Leone, 2011.