Why we need to improve the lives of Ebola survivors as part of prevention

12/11/2014

Pauline OosterhoffPauline profile

The world is paying plenty of attention these days to Ebola infections and deaths. It is paying much less attention to helping Ebola survivors recover and reintegrate. This is a mistake, not just because survivors need help (they do), but because helping survivors is one of the most important tools for preventing the further spread of the disease. As West African Ebola survivors return from medical facilities into society, they report to their friends and families on what they have experienced there, on the quality of treatment and terminal care for the dying. Their testimonies affect the willingness of others to seek care in these facilities. If people in the broader community hear stories of inadequate treatment and neglect from survivors, or if survivors are ostracised on their return, then the community will resist public-health efforts, hide infected family members and refuse to cooperate with medical institutions. This helps the virus spread.

In other words, decent treatment of Ebola victims when they are in medical facilities, and helping survivors to reintegrate and regain their livelihoods afterwards, are critical to slowing the epidemic. But in the traumatised, fearful communities struck by the disease, Ebola survivors are often stigmatised and destitute when they return. Many are plagued by survivors’ guilt and depression. Their social support networks may be damaged by the deaths of caregivers, relatives and friends. Neighbours, or even their own children, are scared of them. Their houses, utensils and even their food reserves have sometimes been burned in efforts to destroy the virus. The interrelated effects of stigma, fear and poverty are highlighted in Alain Epelboin’s film “Ebola is Not a Laughing Matter”, about his experiences working with Red Cross workers from Congo.

How can organisations help Ebola survivors reintegrate?

A number of ideas are being mooted. One international organisation has tabled the idea of giving survivors jobs burying the dead. Given the stigma they already suffer from, this idea clearly has some risks. Another idea is to get survivors to play the crucial role of donating their convalescent blood and plasma products, which may have antibodies that can help others survive. But in areas long rife with rumours of organ trading, this raises issues as well.

Anthropologists, with their expertise in how cultures, institutions and physical phenomena interact, can help answer these types of questions. But surprisingly few anthropologists have worked recently in the West African countries most affected by Ebola. Some of the most detailed ethnographic literature on daily life in these countries dates back to the colonial era; more recently, participatory observations and fieldwork have been hindered by decades of instability and conflict. But health professionals need anthropologists’ expertise on highly specific aspects of daily life, such as burial practices and managing bodily fluids, in order to provide clear and practical advice on the outbreak and build locally appropriate interventions.

The concept of giving survivors a livelihood by employing them for burial ceremonies was recently raised at the UK-based Ebola Response Anthropology Platform (ERAP). Survivors’ immune systems are more likely to be resistant to contracting Ebola from otherwise highly contagious corpses, improving prevention. Besides income, the job would give survivors an important new role in their old communities. This idea is apparently particularly popular among some of the religious organisations working on the ground in West Africa. Employing stigmatised survivors to bury Ebola casualties sounds like a great idea. But as any anthropologist student can tell you, ideas that make perfect sense from one perspective can make less sense from a different one.

Exploring ideas from all perspectives 

When I invited members of ERAP to contribute their views, it became clear that this potentially innovative idea still needed quite a bit more thought. Medical burial teams have already antagonised many communities through culturally unacceptable burial methods: cremation, improper handling of the dead, concealing the dead person’s face, and so on. James Fairhead, of the University of Sussex, pointed out that given these tensions, the proposal would be “giving an already ostracised group (i.e. Ebola survivors) the role of burying others in what is often a highly disapproved-of way. The question arises: is this likely to (a) add to the stigma of that group, and (b) add to the negative image of the ETCs (Emergency Treatment Centres)… One needs to avoid as much as possible negative attitudes to ETCs (or the more decentralised units) as it is going to become so important that people come to them voluntarily to seek health.” Organisations can engage with communities to overcome these contradictions, but that may or may not work. Community engagement on the employment of survivors in burial ceremonies has to take these perceptions into account, and not be dismissed as “stigma”.

Paul Richards and many other anthropologists have pointed out that “community myths” or “misperceptions” are often grounded in reality, or in incomplete information. That semen is still infective up to 90 days after recovery makes Ebola also a sexually transmitted disease. Campaigns have not focused on the sexuality of Ebola survivors or on breastfeeding mothers. Breast milk also has to be avoided up to 90 days after recovery. The Ebola Survivor who was said to have ‘Infected his Wife to Death’ is likely to have done this through sexual contact. People unaware of these transmission vectors who then witness wives or children of survivors contract Ebola and die may come to fear all interactions with survivors. Avoiding people who have contracted a disease can be perfectly rational behaviour if you lack accurate information on how the disease is communicated. It is important to avoid exoticising or pathologising such behaviour, and to instead obtain a factual comprehension of the behaviours or situations that result in survivors being stigmatised. In some cases, social avoidance of survivors may have nothing to do with Ebola, but with the fact that survivors are destitute, needy and miserable, and people want to avoid feeling guilty. This is quite similar to the widespread social rejection experienced until recently by child soldiers or cancer and HIV patients.

Employing survivors to bury the dead with dignity has powerful emotive and spiritual resonances; it is easy to see why the idea appeals to religious organisations. But as Fairhead points out, one can “appreciate religious institutions as compassionate towards the ostracised,” while also recognising that some of the practices they find appealing may be divisive. Before deploying suggestions for reintegrating Ebola survivors in West Africa, it is important to have a sense of how these initiatives will actually be received in the local cultural context, in the midst of a raging epidemic. And getting the recovery and reintegration of survivors right, and making them allies in prevention efforts, is crucial to the effort to stop the spread of the disease.

Pauline Oosterhoff is a research fellow at the Institute of Development Studies and a member of the Ebola Response Anthropology Platform

The Ebola Response Anthropology Platform is a joint effort of the London School of Hygiene & Tropical Medicine, the Institute of Development Studies, the University of Exeter and the University of Sussex

Previous blog posts by Pauline Oosterhoff:

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Digital Battlegrounds: the growing struggle to contest LGBT online spaces

15/10/2014

Stephen WoodStephen_Wood200

The meteoric rise in the use of smart phones and the internet over the last ten years, both within the West and in increasing numbers in regions such as South-East Asia and Africa, has brought fresh opportunities by which we can make sense of ourselves as individuals and participate in our communities. There is now recognition amongst politicians and policy actors that these technological advances are shaping public debate in unexpected and interconnected ways.

Nowhere has this transformation been so noticeable and relevant than amongst those sexual minorities building lives in societies whose harsh cultural and legal barriers prevent open expression of non-normative sexualities. For many, lives lived online have become richer, offering resilience and strength in ways impossible on the streets or even within their home.

Opportunities for online growth

The possibilities of social media have facilitated the establishment of discreet and anonymous methods of connecting and meeting up for social support, commercial transactions, sexual and romantic encounters. In places such as China, where family plays an incredibly important part in building and maintaining social capital, there has been a growth in ‘arranged’ marriages between lesbians and gay men organised online that provide opportunities for mutually-assured social acceptance and a freedom to explore identities discreetly, especially in urban settings where kinship networks are policed less. Heavily moderated and secure online spaces on platforms such as Facebook in countries like the Philippines allow for anonymous or open organizing for social and political activism, as well as providing opportunities for HIV prevention outreach work, such as the Adam’s Love campaign in Thailand for men who love men.

As researchers, these virtual spaces provide fresh opportunities for us to engage with and hear from ‘hidden’ populations, providing we remain mindful that any data we might glean could stem from the relatively privileged in society. As my colleague Pauline Oosterhoff writes in her recent paper ‘Research Methods and Visualisation Tools for Online LGBT communities’, there are remarkable possibilities for larger scale quantitative data collection from geographically dispersed and ordinarily inaccessible participants, although not without some concerns about the quality of data and ethical considerations. With the rising expense of conducting research, this also represents a cost-effective mechanism for building research cohorts and disseminating our findings to new audiences.

The double-edged sword

This connectivity, that brings global communities closer together and feeds perceptions of users as private, individual consumers going about their business away from prying eyes, masks very real dangers. The backlash is already with us. Human rights advocate Scott Long has written extensively about the state targeting of sexual minorities communities in Egypt over the last couple of years, with police targeting LGBT people as a result of online postings that even tangentially aid in their identification. Popular gay male smartphone app Grindr (which presents profiles ordered by GPS distance between users and is thereby incredibly popular for organizing hook-ups) has the potential to identify the physical location of users and could have its functionality distorted into a tool for facilitating violence, entrapment or blackmail for unwary users. The illusory freedom of online life sometimes leaves people feeling invincible and unable to gauge the potential dangers.

As researchers and activists, we must recognize that we stand at a crucial crossroads in the maturity of the internet. In the public eye, the fiercely empowering nature of online activity still holds sway, with acres of media coverage of how democratic accountability was ignited in the ‘social media revolution’ of the Arab Spring or domestically during the recent Scottish Independence debate. These dramatic images of societies coming together in online dialogue are much more visible than the more abstract concerns about big data, cyber security, state surveillance and silencing of dissent. But their impact is devastating. In the last month alone, Scott Long has compellingly exposed the Egyptian government tendering out for tech companies able to provide tools for monitoring online traffic in incredibly intrusive ways, including for evidence of “terminology and vocabulary that are contrary to law and public morality or beyond the scope of custom and community ties”. The successful tender came from a sister company of a Californian-based US internet security firm, raising probing questions about the conflicted relationship Western states are playing in ongoing global debates around LGBT equality, as arrests, detention and abuse across Egypt of LGBT people increases dramatically.

Online activism represents a new front for citizen participation, mobilization and (in)visibility. As a relatively new area of research, there is a real need for evidence to elucidate whether or not it facilitates the emergence of voices from those parts of sexual minority communities that are usually rendered invisible, or whether we are exposed to a vocal activist base drawn from the technologically literate, relatively privileged classes in society pursuing campaigns that at times run counter to the needs and priorities of poorer LGBT people. These campaigns in turn run the risk of being unquestioned and mirrored into global policy spaces by the rapidly expanding class of well-intentioned international LGBT activist ‘clickdavists’, whose efforts could exacerbate accusations of Western cultural imperialism.

The potential for online spaces to foster strong communities and civic participation amongst those facing discrimination as a consequence of their sexual identities remains great, yet are being contested aggressively by opponents. Even amongst sexual minorities themselves, the dynamics of social media use are reshaping communities and civil society in under-examined ways that are potentially troubling and warrant further research. With activists and academics pressured on a daily basis to put their energies into the viscerally immediate ‘ground war’ of embattled LGBT communities, we ignore the online ‘air war’ at our peril.

Stephen Wood is a Research Officer on the Sexuality and Development Programme within the Participation, Power and Social Change research team at IDS. He can be found on Twitter as: StephenWood_UK

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The paradoxical role of families in women and girls health in slums

09/07/2014

Pauline OosterhoffPauline profile

One of the things that strikes one most clearly in working in the slums in Kenya is that, as in many developing countries, the state is barely present in most people’s lives. For the women my colleague Emily Kahega Igonya and I encountered in Nairobi’s slums last week, the government was inactive while they were sold by their sisters or brothers-in-law, tricked into unpaid work with false promises of education, and kicked out of their parental homes as orphans.

Yet Kenya’s recent constitutional reforms are based on the idea that devolution, handing off central government responsibilities to municipalities, can solve people’s problems by bringing government closer to their lives. This seems doubtful, given that for most of the women in slums we talked to, it is family and friends, not the state, that provides them with support. It made us wonder how and to what extent state policies can interfere in dysfunctional families, when it is the family that provides for the services that dysfunctional states fail to provide.

The impact of the new Kenyan constitution on health outcomes

According to the new Kenyan constitution introduced in May 2010, all Kenyans have the right to the highest attainable standard of health. To realise access to health, the constitutional reforms prescribe “devolution”, a transfer of responsibility from the national government to the counties. Devolution should bring the government closer to the people.

Last week Emily and I examined the effects of Kenya’s constitutional reforms on access to HIV and AIDS services for women and girls in Nairobi slums. We worked with HIV-positive women, all young mothers, on digital storytelling to inform policy makers of the effects of these national policies on their health. All women described betrayal in their families –often by other women- that exposed them to HIV, violence, and destitution. Yet it is their sense of family –even if it is just their own children – that allows them to survive in the absence of a functioning state.

When Larissa, a widow with two children, completed primary school in a village, her mother was no longer able to pay for her school fees. She called her elder sister in Nairobi, who offered to pay for her education. Upon arrival in Nairobi, however, her sister told her that she would only pay for school fees if Larissa agreed to marry her husband as his second wife. When she refused, her sister’s husband presented Larissa with a widower with two children who would marry her and pay her school fees if she were to take care of him and his children. She ran away and met a man with a job in a restaurant who paid her school fees and married her. Shortly after the delivery of her second child, he fell ill with AIDS. He encouraged her to seek treatment from international donors but he denied that he was HIV positive to her until the very end. She has now been inherited by his younger brother. He takes good care of her, and she is pregnant with his child. Who is failing women like her?

The implementation of the devolution of health services began last year, with the election of governors and county principals, but it has barely affected these women. For sex workers -some of whom have been involved in sex work since their early teens – the effect on their health has been clearly negative. Municipalities interpret and enforce laws on sex work more harshly than the central authorities did, chasing women off the streets and detaining them. Police detention makes it harder for them to take their AIDS medicines. Sex workers reported having to stop their medication completely, or change to herbal medication. In their perception, devolution means that “law enforcement can now use their cars freely to extort more bribes from us later at night.”

Sex work, the family and state support

For sex workers, other sex workers and community-based organizations are the main form of support after their own family failed. Rose, a young mother, was taken in by older sex workers when she was orphaned at the age of 15 and rejected by her family. She has worked as a sex worker ever since. Sarah’s mother decided that her job was done after her daughter finished primary school. Sarah decided to go to Nairobi to live with her aunt, who could not pay for all her expenses. She had to look for money herself, and at the age of fourteen she found herself on the streets as a sex worker. When her aunt guessed how she made her money, she threw her out, leaving her at the mercy of different men who took her in until they were bored or she became pregnant. Linda finished high school and went to college, hoping to become a secretary. She came to Nairobi to look for work and live with her uncle. He had no money to pay for her. The only people who were willing to help her find a job and a home were bargirls who moonlighted as sex workers.

Women we spoke with –no matter how poor- had done their best to avoid the state health services for years. As Lucy, a young widowed mother of two, explains, “there is no confidentiality, the lines are long and the hours are short, and everyone can see you.” Instead, they obtain AIDS medicines through internationally funded and managed services like MSF and CDC. Kenyan community-based organizations, like HAKI and COTANET, help women to organise themselves and establish their own peer support systems. But for housing, food and other essentials, it is their own family they rely on first. And when that system fails- without any safety net offered by the state, charities or INGO’s – women are exposed to many risks, including HIV. Policies that aim to support the right to health of women and girls in slums need to recognize the central roles of families in responding to governmental irresponsibility.

All names in this article are fictional to protect the identity of the women.

Pauline Oosterhoff is a Research Fellow for the Participation, Power and Social Change (PPSC) team at IDS. She can be found on Twitter as: @PPJOosterhoff

Previous blog posts by Pauline Oosterhoff:


What does it mean to be an explorer in development? Review of Robert Chambers’ recent book

03/06/2014

Pauline OosterhoffPauline profile

It is rather rare these days to find optimistic books on development. Robert Chambers’ latest book is a welcome change. Into the Unknown: Explorations in development practice does not shy away from sharply critiquing development paradigms that have proven ill-suited or counter-productive over the past five decades. This includes, Chambers ruefully acknowledges, some of those he has been part of himself, in his nearly half century in development work. But he remains enthusiastic about the capacity of development initiatives to succeed when they avoid being co-opted by powerful gatekeepers, and incorporate the knowledge and agency of poor people themselves.

‘Written in the spirit of exploration’
In the preface, Chambers modestly introduces himself as someone who learned -during an exercise managed by a student- that he mainly sees himself not so much as a researcher but as an explorer. With that he sets the tone for a book ’written in the spirit of exploration.’ The book contains some older already-published articles, and some new more recent work. The first part of the book critically explores Chambers’ professional experiences, starting as a colonial field administrator in Kenya; the second contains reflections on learning and teaching as individuals; and the final section explores the future of development in a digitalized world.

Chambers is hopeful about poor people’s abilities to improve their lives, and sceptical about privileged people’s willingness to recognise the distorting effects of power. A recurrent theme is the system of incentives for framing the realities of the poor in ways that suit the powers that be. The book details many examples of perverse incentives in the development sector. In Chapter 3, which focuses on irrigation in South Asia, Chambers explains how a water distribution project with context-specific

into-the-unknown-cover-imagrequirements only available in the Northwest of India was nonetheless sold as an India-wide solution, ignoring farmers’ knowledge and needs. Chambers harshly criticises the use of research to document the ’successes‘ of such projects. Badly-designed large projects continue to be authorised, he argues, because ’on a personal and social level there [is] a self-sustaining nexus of professional, social and personal relations, with a political economy linked to careers and income.’ Donors and recipients have a common interest in approving large loans; national officers stand to gain secondments to international organisations if they approve their projects; development workers hope to win well-paying consultancies; and expatriates especially tend to be part of social networks  with shared schools, swimming pools and other recreations. Designing good projects takes time to explore, listen, and learn through open-ended consultations with the poor, time that career-driven development professionals often do not have. The next section of the book focuses on acknowledging failures, reflexive learning, and how it can be promoted among institutions, groups and individuals.

A stimulating read
Chambers writes with humour, wit, and a real verve for telling stories, including unflattering ones about the author for the benefit of the reader’s education. (This is part a deliberate tactic; what sticks in people’s minds, Chambers writes, is ’telling stories, best against yourself‘.) There are lots of other plusses in the book – tips for individual learning and self-reflection, activities to plan, organize and conduct large participatory workshops and co-generating knowledge (ensure people have time to meet in well-set up coffee breaks, neutralizing dominators, finding out experiences and resources in the group). It clocks in at a very readable 130 pages, structured into 3 parts and 7 chapters with key lessons learned over a career in development that spans almost half a century on exploring experience and learning on development. This manageable size, clear language and the light tone make it a stimulating read.

But the book would have benefited from more detail on how to deal with gatekeepers to the poor who are less interested in learning than in keeping their privileged status. In development practice there are many hurdles, including visa procedures and travel restrictions that aim to deter explorers. What do we do with people in positions of power who are not eager to learn and discover? Apart from whistleblowing, what can we do to support good governance and effective development practices? This is one of the crucial battlegrounds in development work, and to be honest, I would have appreciated more stories about when to choose a battle.

On the other hand, the author is quite aware of his tendency to be optimistic. If you can accept that you will have to figure out yourself how to deal with gatekeepers and other authoritarian figures, the book provides a wealth of insights into development practices that are likely to deliver more sustainable results than narrow logframes.

Pauline Oosterhoff is Research Fellow for the Participation, Power and Social Change (PPSC) team at IDS.