Zika virus, human rights, gender and disability: opportunities to ‘build back better’ health and social systems

By Laura Dean*, Kate Hawkins, Rachel Tolhurst, Eleanor Macpherson, Lee Haines, Daniela Ferreira, Angela Obasi and Sally Theobald

Zika is a disease exacerbated by poverty – risk is not spread uniformly – those who already face extreme social marginalisation are more vulnerable. If you live in a poor area, such as a Favela; Ghetto etc., with limited access to running water, sanitation, rubbish disposal, health facilities and education regarding how mosquitoes reproduce you are likely to be more at risk to vector-borne diseases. Over the next few weeks and months we are likely to witness the release of much more information that keeps Zika being discussed. This blog explores three key, inter-related issues in relation to Zika: gender and power; context and vulnerabilities; and stigma, disability and pregnancy. Zika particularly focuses a spotlight on gender and disability in low and middle income settings (LMICs). In the lead up to International Women’s Day, we believe that health systems researchers should grasp the opportunity to think about how they can ‘build back better’ health and social systems in the wake of this and other epidemics.

Delaying Pregnancy: Gender, power and sexual and reproductive rights

Richard Horton, the Editor-in-Chief of The Lancet, recently highlighted gender as the neglected area in global health, pointing out that it receives inadequate focus within the Sustainable Development Goals (SDG). Much of the messaging that has come in the wake of the Zika epidemic in the Americas seems similarly gender blind.

In her recent blog, Clementine Ford presents the predicament that governments face when associations are presented with potentially disabling congenital conditions (microcephaly), a virus epidemic (Zika), and pregnancy. A recommendation to delay pregnancy for two years, as is being suggested in countries like El Salvador, seems disconcerting to those of us familiar with contexts where abortion is illegal and/or stigmatised and there is a high unmet need for contraception. Sadly, challenges in realising sexual and reproductive rights for women in these contexts are not unique to the Zika epidemic.

There is a need for greater collaborative thinking between decision makers working within patriarchal systems, scientists, and those who these decisions are most likely to impact upon, particularly women of reproductive age. In responding to the growing evidence that suggests a causal link between Zika virus and microcephaly, there is a need to re-open, encourage and maintain focus on debates regarding sexual and reproductive health and rights within the Latin American region. Not only should it be a woman’s right to choose if and when to get pregnant, based on accurate information, but also she should be granted access to the services that enable her to make this informed choice.

Context Matters: Vulnerabilities and Social Marginalisation

Zika virus, and other insect-borne diseases like Dengue and Chikungunya, highlight the troubling health inequity that is based on deprived living conditions. Within Brazil’s favelas, there is a large proportion of single parent families, the majority of which are headed by women. These households are more likely to experience perpetual cycles of poverty as a result of the economic shock of disease. In addition, where children are born with potentially disabling impairments they are often further isolated by limited support or social protection from the government and become reliant on seeking support from the private non-governmental sector if and when it exists. For example, in their recent blog Reed Johnson and Rogeiro Jelmayer present the story of Alice, a baby born with microcephaly, whose parents now ‘spends one sixth of their income on a battery of medications and treatments for Alice’ in addition to the opportunity and travel costs associated with attending medical appointments. Families living in favelas are more vulnerable to arboviruses than those families living in apartment towers that are expensive, well built, screened and elevated well above primary mosquito habitats. This is inequitable.

Currently, Zika outbreak management is focused on mosquito control strategies aimed at reducing mosquito densities (larviciding and fogging) and bite prevention by female adult mosquitoes (repellents). Research into vaccine development and new diagnostic tools is also a global priority. Inequitable vulnerabilities also need to be considered alongside medical and technological advancements if we are to build better social and just systems and environments that reduce the risk of disease.

Disability related stigma: Reinforcement and creation

Since there has been such an increase in media coverage on Zika, several reports of disconcerting new stigmas in poor areas in Brazil have emerged, for example, pregnant women being made to feel stupid for being pregnant. In addition, men have been stigmatised for fathering a ‘Zika baby’ – further reinforcing stereotypical norms related to virility, fertility and machismo – and in some cases leading to the abandonment of their partners and children.

Abandonment of mother and baby due to a child being born with a disabling impairment is not a new phenomenon, nor is it unique to microcephaly in the context of Zika. However it provides another clear example of extreme social marginalisation and stigmatisation that disease outbreaks can create.

In part this is due to the portrayal of Zika and microcephaly within the media. Currently, there is no proven causal link between microcephaly and Zika, rather associations are hypothesised within the Brazilian context. Regardless of causal link or pathway, there is need to think critically about the portrayal of microcephaly and how this can label children ( in some instances before they are born), and (i) reinforce negative social constructs of disability and (ii) stigmatise pregnancy itself undermines one of the most fundamental reproductive rights that women have. The World Health Organisation describes microcephaly as a condition where a baby is born with a small head or the head stops growing after birth. Microcephaly can cause varying degrees of impairment and grouping all or indeed any babies born with microcephaly as ‘damaged’ is a dangerous branding. Nevertheless, babies born with microcephaly, particularly when located in the poorest regions, are likely to need additional access to medical services and social interventions. This cannot be forgotten as causality between microcephaly and Zika virus are further investigated, and focus should also be given to the provision of support and inclusive development for individuals living with microcephaly regardless of cause.

It is our role as health practitioners, researchers and policy makers, to think about what this means for people living with microcephaly and indeed other disabilities and what we can do to create more supportive, enabling and inclusive environments. This is likely to need multi-disciplinary approaches, with a need for social mobilisation. As an immediate priority we should reject the label ‘Zika baby’, just as the term ‘AIDS baby’ was consigned to the dustbin of medical history.

The way forward for gender and disability and the Zika epidemic

Responding appropriately to the Zika epidemic will require us to navigate the landscape of complex reproductive health messaging and service provision. It must be based on strong community engagement, adjustments within the health system to make service more equitable and accessible, and realistic and pragmatic thinking about policy implications, which may require a shift from ideology to evidence and rights. We would argue that this can only occur if new partnerships between epidemiologists, virologists, clinicians, gender specialists, disability rights activists, vector biologists, sociologists, psychologists, and health systems researchers are forged and inform policy. Multi-disciplinary approaches are essential. Furthermore, globally stakeholders who are most affected by disease epidemics need to have their voices heard and drive the questions on equity. It is critical to remember that as vaccines are developed, and scientific links are proven/disproven, human rights abuses related to disability and sexual and reproductive healthwill remain globally and are often felt most by those who are already socially marginalised. This is unacceptable and we must set aside resources to tackle these issues.

Laura Dean is a research assistant and PhD candidate at theLiverpool School of Tropical Medicine. Her research focuses on equity andhealth systems, with specific interests in gender, disability and community ledinterventions. She currently works with the COUNTDOWN consortium on exploringways that control and elimination of Neglected Tropical Diseases can be moreinclusive and equitable.