Overcoming Denial and Stigma of COVID-19 in Slums: Story of a Gutsy Frontline Health Worker

Urban slums and informal settlements of the Global South are characterized by higher population density, overcrowding and poor education and awareness. Most slums and informal settlements are not in purview of health facilities. They are a neglected section of population largely representing the voiceless. These factors are conducive to an environment which perpetuates myths about certain contagious diseases and illness. 

We describe here instances of stigma and denial as well as a gutsy effort to overcome denial learnt from different slums of Indore.

Residents of Deep Nagar basti in Indore were in denial even when the area was barricaded owing to being in a containment zone. In another slum area Ganeshipura, residents shooed away women’s group members from a neighbouring slum and also put up a defense to reinforce the absence of any cases in the area.  Their false brave acts and defiant body language prevented UHRC mentored women’s group members from making any effort to help the basti families overcome denial. We learnt that at family and society level people prefer to be seen similar to the rest in their immediate society to not be singled out in a negative sense as would be if someone in a family was infected with Coronavirus. The fear of being treated like an outcast in the larger community and possibly loose livelihood opportunities also accentuates stigma and denial as most slum dwellers earn wages in informal work.

We learnt of a positive example where slum dwellers overcame stigma. In Aman Nagar Basti in Indore, 26 year old, Ratna a UHRC trained active Urban ASHA (Accredited Social Health Activist) was able to motivate families which had the first 2-3 COVID-19 positive cases to not consider the infection as stigma. She encouraged their family members and neighbours to get tested. She proactively visited the houses, and families in the vicinity and confidently encouraged them to go in for COVID-19 testing. Ratna, the Urban ASHA urged the Health Department team to visit and test family members and neighbours of those who initially tested positive.

Owing to Ratna’s commitment which she has acquired with UHRC’s training and outreach work since she was an adolescent, the Health Department sent their team regularly for 2-3 days to the basti. Her confidence comes from her mother who herself has been an active women’s group member. Ratna escorted them to the families that were in contact with the initial COVID-19 positive cases and continued to allay fears. Meanwhile, the Health Department team conducted COVID-19 tests and provided counselling to the basti families. Eventually 18-20 people were tested positive within the neighbourhood. Through these efforts basti dwellers were able to act in an informed way and overcome their fears. Most people in the neighbourhood wore masks to prevent them from spreading the infection and from acquiring it.

The examples of denial and stigma and the positive example of overcoming it, reinforce the need of NGOs to train slum community members, strengthen outreach and help vulnerable populations gain correct knowledge, overcome COVID-19 fear and stigma and get themselves tested. The role of community-level health functionaries (ASHAs) in slums also comes to the fore, in proactively addressing stigma, encouraging testing, and motivating preventing behaviours, such as wearing masks; especially in slums which are often the neglected sites for health coverage.

(The names of persons and places featured in this piece have been changed in the interest of privacy.) 

Siddharth Agarwal, Shabnam Verma, Neeraj Verma, Kanupriya Kothiwal

Urban Health Resource Centre 

A BIG Idea by Shrey Goel

Adapted from one of two winning essays from the UC Berkeley Blum Center for Developing Economies’ 2014 Finding Big Ideas Essay Contest. The original essay can be found here.

This summer I had the privilege of working with the UHRC as a part of my Global Poverty and Practice Minor. This post attempts to outline how the UHRC operates, as I came to understand it, and why I found it’s operational philosophy to be a “big idea”.

The UHRC focuses on urban poverty by entering into slum communities and holding discussions with community members, proposing the idea of forming community women’s groups. These conversations aim to stimulate the women in slums to think about whether or not collective community action can help them confront the challenges they face. In my conversations with Dr. Agarwal, the Executive Director, he explained that an important aspect to this process is not pushing group formation on communities – if community members do not express interest, the UHRC steps back until interest grows because in the absence of an organic investment by the people, the initiative will simply be unsustainable. Once a group has formed, the first step is basic training surrounding health outreach and advocacy. Trainings cover tracking and surveying vulnerable groups (such as pregnant women) in slums as well as reaching out to government, private, and volunteer health providers to run camps in communities.

After groups are well-established, they pursue higher-level activities with the support of UHRC field workers as new needs emerge. For example one need that became evident early on was financial resilience to health exigencies and other similar events. When this need emerged, the UHRC began helping women’s groups establish collective insurance funds by providing trainings on how to collect member contributions, keep records, and administer loans. These collective insurance funds are different from microfinance loans because the seed money comes entirely from group members and loans are granted for home improvement initiatives and health emergencies in addition to microenterprise. Rules[1] are established and enforced by women’s group members who decide on conditions together, rather than following the mandates of an external institution. 

Another need that emerged early on in the UHRC’s operations was infrastructural improvement in communities and knowledge about applying for government schemes and programs. To address this, the UHRC began facilitating trainings on petition writing to local municipal authorities, discussing with groups the best ways to write collective appeals and document all their communications. Groups also began learning to write reminders to local officials when their requests for things like street paving and drain installation were ignored.

What I have outlined thus far is how the UHRC works in the field, but not why the UHRC has elected to approach urban poverty in this fashion. India’s trajectory of urbanization has led many families from poor rural and peri-urban areas into city-centers, but they arrive faster than the planning process can incorporate them. They are relegated to informal and often illegal occupations of whatever free space they can find, where they erect impermanent housing units or occupy existing run down units. The allure and pursuit of better economic prospects pits poor urban families in slums in competition, thus leading to fragmentation as families are not incentivized to work in solidarity towards mutual upliftment. These oppressive factors result in decreased household and community-level social cohesion in slums. Therefore, helping communities build stronger bonds through collective action is the goal that underlies the UHRC’s initiatives.

According to Bandura’s theory of self-efficacy, an individual’s belief in their ability to accomplish a task influences their actual capacity to accomplish it. Applying this concept to groups, Gibson has theorized that just as individuals have self-efficacy, so do groups have group efficacy. In a conversation with Dr. Agarwal, he explained to me that both forms of efficacy depend upon small instances of success early on in order to build confidence for more ambitious endeavors later because they enhance people’s belief in their own ability. This is why the UHRC begins with basic health outreach activity, which lends itself to higher success rates than petitions for infrastructural improvement, which require greater persistence and higher degrees of organizing. However as groups slowly progress, they develop the confidence to interface with municipal authorities and local officials, and this confidence has led to huge improvements in many UHRC program slums, such as paved roads, covered drains, and regular street and garbage cleaning.

What I believe differentiates UHRC from other NGOs is it’s underlying ethos. The UHRC has elected to pursue what Dr. Agarwal calls a “deprojectized” model of development. The organization has no intention of leaving the communities it operates in, and in many cases, other NGOs have come to Agra and Indore to run short-term programs, offering employment to UHRC women’s group members who are able to serve as a high-capacity work force. The women’s groups have become a platform for future development, but the UHRC doesn’t just strap women with responsibility and then leave – it stays and provides continual support through field workers and field offices.

            The UHRC’s approach aims to tackle poverty at a fundamental level. It is highly resource efficient, and effective, relative to costly multi-national aid initiatives. In bringing community knowledge and expertise to the forefront, this approach challenges the current centers of poverty knowledge generation (such as research institutions and global development banks); it asks poverty experts to recognize community knowledge as legitimate. But this is why the UHRC’s methods have so much potential. I remember one day speaking with some women’s group members in one of the poorest UHRC Agra slums called Indra Nagar. For most of its history, Indra Nagar has been a tent colony, home to nomadic merchants and craftsmen. One of the women explained that before the UHRC, nobody would even come into their slum. Nobody would loan them money and women could barely even leave their homes due to highly conservative gender dynamics. Recently, however, she was able to take out a 10,000 Rupee loan from her Federation[2]. She was able to open up a storefront and is currently paying back her loan at a rate of 1,000 Rupees per month. It is because of this high degree of community member investment that I heard many women this summer talk about going to yet unreached slums to establish women’s groups throughout my stay in Agra.

            I believe it all comes down to something basic – what Dr. Agarwal frequently called trust. What he meant by that is that by putting trust and faith in slum community members, an iterative process of mutual learning is able to take place. It’s a process that allows slum residents to cultivate their faith in their ability to navigate urban institutions and to build a stronger social fabric. It’s also a process that demonstrates the urban poor can and must be given an active role in the upliftment of their communities. And that to me is a big idea.

Shrey Goel
Environmental Science, Pre-Med (Global Poverty and Practice Minor)
4th Year Undergraduate, University of California, Berkeley

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[1] Such as monthly per-member contributions, late fees, and repayment interest rates, which rarely exceed 3%

[2] A Federation is a collective of women’s groups in a particular region that runs a higher level collective savings program and pursues larger-scale initiatives

A Reflection of My Learning and Thoughts While Working in India with UHRC: Danny Tea

When my school offered a rotation experience in India, I was unsure of whether or not I wanted to participate. When I applied and got accepted, I had no idea what to expect. After a month passed in India and it was time to return home, I couldn’t have been more happy and grateful to be a part of such an amazing experience.

This was my first time traveling to India, so I had absolutely no clue as to what to expect nor could I even imagine what to expect.  Arriving in New Delhi, I knew that we would be screening patients for hypertension, diabetes and chronic obstructive pulmonary disease (COPD) in the slums of New Mustafabad but nothing more. The second we stepped off the Seelampur metro stop prior to the rickshaw ride on our first day of work, every single one of us were in complete and utter dismay at the level of poverty this part of town was in, the same part of town just a short distance from the seemingly westernized and urban city our hotel was located.  No words can fully describe how unfathomable it was to me.  I remember during a meeting before we left, one of our professors Dr. Jacobson mentioned that we might be seeing a level of poverty that is going to be unbelievable.  Her words rang truer than ever. Limbless beggars lined the roadside next to small children no older than 5 years of age selling fruits and water. The air smelled of foul odor and flies were everywhere you went, including on the food being sold by the street vendors.

The neighborhood we worked in was equivalent to the environment depicted in the film Slumdog Millionaire. Some children and adults walked around barefoot. Trash was littered everywhere. I could just feel my lungs gasping for air because the air quality was so bad due to the lack of sanitation in the environment.  I got a firsthand look at the community, culture and the lifestyle of the residents here and the challenges they face in healthcare, education, food and everything down to the most basic necessities of life.  It was extremely humbling to be able to experience the reality of these people’s lives and the hardships they face on a daily basis. It not only mentally prepared us for the upcoming month but cultured us in a way that will help us becoming better pharmacists and better people.

We spent our time there split between different parts of the New Mustafabad slum in order to attract as many people as we could. We also took a weekend trip to Agra and held a clinic there as well. It was interesting and eye opening to be able to compare and contrast two different slum communities in differing cities. While the residents of New Delhi and Agra both have similar lifestyles in terms of diet and their quality of life, the medical data we collected from patients painted a different picture.  It was an immensely educational and enlightening process to be able to sit and reason why residents of both Agra and New Delhi both complained of shortness of breath but yet only the people in New Delhi showed very high incidences of hypertension.  I thoroughly enjoyed being able to bridge the gap between those that need help and those that can provide help, while simultaneously furthering my knowledge in medicine, pharmacology and especially public health.  I was never too interested in the idea of public health, mainly because I never fully understood it. This trip to India awarded me the experiences I needed to comprehend the root causes of many widespread health issues and in turn, I developed and acquired a great appreciation and respect for the idea of public health and all health care practitioners that devote their lives to uphold the ideals of public health.  Not only has this influenced the way I think, but this trip to India will forever dictate the way I act and how I carry on my life.

Dr. Siddarth Agarwal, founder and president of the UHRC, lends a helping hand in our clinic.

One of the greatest lessons I took away from this global health experience in India is not related to medicine or pharmacy whatsoever.  Living in a foreign environment where values and ideals differ from the ones you hold personally can really help to expand your thinking and understanding of the world. Cultural competence is something that can be taught, but not necessarily fully understood. Seeing a different part of the world and watching how people behave, react and carry on their normal lives really taught me the meaning of being culturally competent.  I can’t emphasize how humbling this past month has been for me.  Realizing that I was a guest in someone else’s country, I found myself taking a step back to observe mannerisms and also respecting the people’s beliefs.  It wasn’t until I understood them did I fully respect them. And it wasn’t until I respected them was I able to accept them. Cultural acceptance is something I learned during my stay and is something I find to be different than just culturally competent.  Working in close conjunction with the population and interacting with them really touched my heart. Despite our backgrounds or where in the world we are, we must not forget that at the end of the day, we are all people of the same kind.

Initially, interviewing patients and attempting to counsel them proved an arduous task.  However, despite our language barrier and cultural differences, we were able to develop a rapport with the community population without speaking a single word to each other.  Body language and unique gestures provided not only a mutual understanding but also a mutual respect for each other once we both saw the beneficial outcomes of our screening process.  It’s hard enough as it is to trust and accept someone without fully understanding their words and motives.  We were able to overcome all this and found a way to eventually have the people embrace us, and us them. Providing help to those that need it is something that anyone can understand.  Thus, it is not about where you live or how much you have that defines who you are as a person.  It is character that resonates the loudest and it is character that will always continue to stand as the universal language of people everywhere.

Danny Tea
Doctor of Pharmacy Candidate, Class of 2014
Touro College of Pharmacy
New York, NY