By Anna Maitland, J.D., Schuette Clinical Fellow in Health and Human Rights
Access to Health students and faculty sit with the Federation Health Board to discuss findings about health issues in partner communities.
“How do you know if you have malaria?” “How often do people get burned in the community?” “How do you get clean water?”
The students lean in, their faces a study of interest, curiosity, and sunburn as they work to decipher the thick Nigerian English of the Health Team of the Nigerian Slum/Informal Settlement Federation, Lagos Chapter. The medical student has been taking copious notes – the diligence of his recordkeeping is later reflected in his report. One of the law students asks a question that she has made sure to ask across all focus groups – “Do women go for malaria testing or treatment when pregnant?” – which leads into a nuanced discussion of the interrelationship between infectious disease and maternal health in Nigeria. The business students keep clear records on perceived and real costs of supposedly free services, pointing out in post-meeting discussions the discrepancies and unpredictable costs of urgent care.
The Nigerian Slum/Informal Settlement Federation is a movement of the urban poor for dignity and development, made up of savings groups in informal settlements and slums in Lagos, Port Harcourt, and rapidly growing to other urban centers in Nigeria. The Federation’s Health Team – about 20 men and women from over 15 different Lagos informal settlements and at least 4 different language/ethnic groups, reflecting Lagos’s tremendous diversity – is fully invested, providing insightful answers while also asking pointed questions that show how hungry people are for information about their health. “Is it true that you can do family planning based on a woman’s flow?” “How do we stop measles?” “Why do I need to get a malaria test when I have the fever, aches, and sickness already?” “Vaccinations are dangerous and can kill us – why would we get them?”
The Federation organizes communities through community-level economic empowerment, community-led data collection through participatory slum profiling and mapping, and strong inter-community solidarity and advocacy around shared challenges and priorities. This movement is supported by Justice & Empowerment Initiatives (JEI), a Nigerian NGO I co-founded with colleagues Megan Chapman and Andrew Maki in 2014, which provides grassroots legal empowerment to Federation member communities by training and supervising a network of community-based paralegals, providing free legal services and supporting community-led advocacy. During my years with JEI in Nigeria, I had spent a great deal of time with community leadership, women’s groups, savings groups and other stakeholders working on key community priorities such as stopping forced evictions, addressing police brutality, and helping communities access basic services such as water and electricity. However, while we at JEI understood that our partner communities face major health challenges – working to respond to and record the issues experienced by evicted communities, we had seen the brutal health consequences and deaths caused by displacement in already fragile health environments – responding to such challenges had never been possible as we lacked meaningful partnerships with health advocates. Thus, while I had a sense that health education was low, reliance on traditional medicine high, and access to hospitals was sporadic at best, deeply understanding and tackling these issues had never before been a focus.
In July of last year, I transitioned from Nigeria to Chicago for the inaugural Schuette Clinical Fellowship in Health and Human Rights at Northwestern Pritzker School of Law. The fellowship offered a unique opportunity to learn more about legal protections for health while supporting the work of the Access to Health Project (ATH). Co-founded by Prof. Juliet Sorensen and Dr. Shannon Galvin, ATH is an inter-disciplinary clinical program focusing on global health that was born from the realization that universities must help prepare students to become global citizens. Bringing together law students, business students and medical students, ATH partners with local NGOs and health-poor communities to research and together generate realistic, targeted, and innovative ways to address barriers to health.
From creative radio and alternative employment strategies in the struggle to stop female genital cutting in Mali, to conducting feasibility studies to help a resource-poor clinic stay open in Sudan, and working with health care providers in the Dominican Republic to form a coalition to streamline and enhance outreach efforts to bateys (neighborhoods made up predominantly of the Haitian-descendent minority), ATH has an impressive track record. From the moment I applied for the Schuette Fellowship, I hoped that ATH would be able to partner with and serve as a resource for Lagos communities.
And here I was, seven months later, in Lagos with ATH – Prof. Sorensen, Dr. Galvin, three law students, two business students, and a fourth year medical student – sitting in the JEI/Federation offices, talking to the newly constituted Health Team, and realizing with a shock just how little I had known about partner communities’ health issues. This was the last day of our trip, and I had learned a lot during our week in Lagos thanks to the inquisitive students and engaged community focus groups. Always game for what the day would bring, the students and professors had been enthusiastic, intrepid, and curious through 10-hour days in 90-degree weather, adjusting to the intense traffic and sometimes harrowing transportation of the largest city in sub-Saharan Africa (~23 million people).
Community members had been far more open in responding to sometimes deeply personal questions relating to HIV/AIDs, family planning, water/sanitation, fire safety, and diseases like malaria and measles than I had expected. I was even more amazed by the sheer number of people who made themselves available to discuss health issues, which spoke to the depth of their concern and interest in finding solutions. In the space of just six days, our team visited 10 different communities, engaged with at least 300 people through focus groups on different topics, and even found time to meet with the Lagos State Ministry of Health, the Provost of the College of Medicine at the University of Lagos, several health-related NGOs and doctors, traditional birthing attendants, and other health services providers. I felt an overwhelming gratitude and sense of honor to the number of people who had invited us into their communities, their homes, their lives, and their personal stories.
As the week had progressed, the focus groups had more and more often turned into basic health training sessions, with the health questions asked by the community conveying more than the answers to the questions we had asked. Watching as interviewees turned the meetings into a chance for them to get what they needed reminded me, again, of how resilient Lagosians must be to survive in this environment.
We learned through these conversations that communities already understood that the extremely poor sanitation available in communities built on trash, with toilets hanging over the lagoon and limited access to clean drinking water and electricity, was directly related to their poor health outcomes. However, they struggle to find tenable solutions in the face of government threats of eviction, marginalization, and absence of most public services. It quickly became clear that hidden costs, fake medicines, and wrongly diagnosed illnesses were doing as much to harm access to health care as poor infrastructure, low education rates, and discriminatory doctoring. And, while I was not surprised by community member’s mix of correct and incorrect knowledge (yes, some people believe malaria is brought on by the sun, but they also know it is brought by mosquitos and that nets would be a good idea), I was unprepared for some of the misconceptions (e.g. HIV/AIDs could be transmitted with a hair comb or by mosquitos) and the general bias against formal medicine (e.g. vaccines kill children).
As I listened, I expected everyone – students, professors, Federation members, JEI – to become discouraged, to see these seemingly insurmountable odds and wonder how to even begin. After my time with JEI, I knew that sometimes you just have to start – take one thing, start working and then take on another, taking strength from small successes along the way. However, addressing barriers to health seemed different from the other work I had supported, with more dire and immediate consequences. And for a moment, sitting and discussing the week’s outcomes, I felt overwhelmed, angered, frustrated, and deeply saddened.
Then, one of the members of the Federation’s health team stood up and asked a question about family planning and another member stood up and gave an answer they had learned during one of the focus group sessions earlier that week. Another person began talking about how better toilets could change things for their community – make it more formal, cleaner, healthier – and I remembered the ATH student who had researched water/sanitation asking focused questions about this issue all week long. And I saw a starting place – one that would take time to grow and mold, but the beginning of a series of new community-owned processes around education, development, and empowerment. A step supported by students learning the meaning of global citizenship, a University invested in global health, and an NGO and Federation ready to make it happen. And I knew this had been a successful week.