ARISE aimed to explore and understand the health and well-being of people and communities working and living in informal spaces, which can be influenced by a combination of factors such as residence, environmental conditions, financial status, educational attainment and social connections with friends and family. There is evidence that the close involvement of co-researchers at every stage of research projects from inception and construction, through execution, to dissemination, can help to ensure that research conducted is relevant to and owned by communities involved.
ARISE used community-based participatory research (CBPR) with co-researchers, which aims to improve accountability, and promote health and well-being as well as develop alliances for new governance arrangements for people living and working in informality. CBPR emphasises building strengths and resources by collaborating with the community in every stage of knowledge building and interventions to address genuine local concerns and problems.
Mahila Milan, “Women Together” in Hindi, are a women’s collective in slums and slum relocation colonies, who work with resident communities, their political representatives and municipal officials to manage credit and savings activities. Mahila Milan was created in 1986 when hundreds of women who lived on Mumbai’s pavements organised to successfully prevent the demolitions of their homes. Their aim is to provide a space for women to take on important decision-making roles and be recognised for their contributions towards improving their communities.
Prior to the ARISE programme, Mahila Milan already functioned in an organised manner with its women’s savings network, and were looking at issues of water, sanitation and housing. Mahila Milan’s work on health was minimal, and the majority of their interventions were on savings activities. During the COVID-19 pandemic in 2020, SPARC and Mahila Milan started working with a focus on health drivers and systems, including the healthcare professionals. In the beginning, Mahila Milan had not considered using surveys as a method for research and action. However, over time, using the learning-by-doing process with SPARC, Mahila Milan realised the relevance of doing surveys to gather data, collectivise and initiate action on health and wellbeing. They were able to distil their findings into small data points with discussion groups in communities, to ensure the survey provided an accurate representation of community views and needs.
Supported by the ARISE responsive challenge fund, the African Population and Health Research Centre (APHRC) worked with Ruben FM to address solid waste management (SWM) and water, sanitation and hygiene (WASH) issues in the community through media advocacy via the radio. This brief presents activities, key outcomes, lessons and recommendations. Community radio is a not-for-profit, informative, uncensored, community-owned and community-run radio station that cater to the informational needs of people living in a particular locality, in the languages and formats that are most suitable to the local context. They are key channels for dispersing developmental information from numerous actors on subjects such as health and wellbeing. Radio campaigns are instruments for raising public awareness and providing a voice to the voiceless. In Kenya these stations are usually initiated and controlled by members of a community of interest, or geographical community, and are platforms to express their concerns, needs and aspirations without outside interference or regulation from the Independent Broadcasting Authority. Despite extensive knowledge about the role of radio stations in advocating for health, well-being, and issues related to SWM and WASH in informal settlements, this medium remains under-explored and under-utilized. This brief presents the activities, key outcomes, lessons learned, and recommendations based on our work.
The ARISE research study in the Korogocho, Viwandani and Mathare informal settlements in Nairobi found that the most vulnerable community members such as people with disabilities (PWDs), children heading households (CHH) and older persons are often invisible to government support and lack agency, causing them to miss out on essential government services, including those specifically intended for them such as social protection programs. The Ajibika project under ARISE embraced the ‘leaving no one behind’ agenda to enhance equity for vulnerable community members, amplifying their voices and making them visible.
In Bangladesh, equitable access to good quality health services is an urgent public health concern for urban informal settlements that are characterised by poor housing conditions, high population density, lack of basic essential services and tenure insecurity. Residents of these settlements live with continuous structural and spatial vulnerabilities and marginalisation. The most vulnerable groups (MVGs) include daily wage earners, single female household heads, pregnant women, elderly people, persons with disability (PWD), ethnic minorities (e.g. Bihari, Harijan, Muchi, etc.) and climate-vulnerable people. MVGs face the greatest disparities in accessing public services, particularly health services. Power imbalances and inequalities play a significant role in perpetuating these gaps. This case study focuses on how elements of a “systems approach” the facilitated active participation and empowerment of informal and low-income settlement communities and established more trusting relationships with health service providers and duty-bearers.
Through the ARISE programme, the George Institute India (TGI) supported the co-creation and strengthening of spaces for women waste workers to convene and discuss issues related to gender, health and wellbeing. This led to women engaging more with collectives to bring their issues to the fore. After four years, women waste workers are willing to take up leadership roles in collectives to ensure that issues relevant to women can be discussed in these spaces. The women waste workers have also volunteered to directly participate in discussions with government officials. At a waste workers’ collective meeting in August 2023, four women waste workers from Shimla volunteered to occupy leadership positions within their collective. This change is significant as it reflects increased confidence among women waste workers to partake in leadership spaces.
Alongside this understanding around women’s health has shifted away from being tethered to linear cycles of reproduction to consider the social determinants of health. This broader perspective has led to action both within women waste worker groups in Shimla, and from duty bearers who were able to listen and adapt their services to address community priorities.
Providing safe spaces for women waste workers to come together and lead discussions around gender, health and wellbeing opened up new opportunities for peer-to-peer exchange. The open nature of the spaces created by ARISE meant discussions and priorities were adaptable to meet the demands and interests of the women waste workers, where previously their needs and voices had been absent from discussions.
The active and steady encouragement ARISE has received from various health system actors enabled them to obtain permissions, establish the credibility of the research team and attract interest from a public tertiary care facility to collaborate and expand their work with their staff. This demonstrates the value and importance of the work being done by ARISE to address this lack of understanding. Health system actors’ interest in the work has led to the co-production of workshops on menstrual health.
Hilary Standing and Sally Theobald have reviewed Sabina Rashid’s book ‘Poverty, gender and health in the slums of Bangladesh: Children of Crows’ for the PLOS journal’s Speaking of Medicine and Health blog.
“This is an unusual book. It inverts the usual academic conventions. It doesn’t foreground theory or give us a lot of statistics. Instead, it gives us an utterly absorbing set of narratives of women and their families living in slum settlements over two time periods, each marked by crisis and uncertainty. Here, it’s the details that count – the worn and patched clothing, the missed meals, the constant resort to loans, the stories told to hide the fact that the family has been reduced to begging. The small but telling details that give us the warp and weft of urban poverty.” Read more on the PLOS Speaking of Medicine and Health blog.
Authors: African Population and Health Research Council (APHRC), Kenya with the ARISE Consortium
Improving Water Sanitation and Hygiene (WASH) and Solid Waste Management (SWM) practices and access was a key focus of ARISE work by the African Population and Health Center (APHRC) in Nairobi.
Background
Providing WASH services in informal settlements is a challenge. Clean water often costs more in informal settlements when it is provided by intermediaries, reducing the amount of water people can afford for handwashing. With a lack of space, residents often rely on shared communal toilets, which can increase transmission risk through surfaces and can be hard for pit emptiers to de-sludge when full. SWM is the collecting, treating and disposing of solid material once it has been discarded. SWM is a challenge in informal settlements because: absentee landlords flout development control orders; inadequate storage containers; indiscriminate disposal by households; unreliable collection by county government; low household incomes; and limited public education. Furthermore, access to WASH and SWM has an equity component. The elderly often have problems accessing water in informal settlements where water points are distant. People have to queue to get water, so they may have to pay someone to go to fetch water for them. People With Disabilities (PWDs) can find it difficult to access toilets. Women and youth are largely responsible for household WASH management and bear a disproportionate burden when these basic services are lacking.
Community outreach event in Nairobi
What happened?
Catalysed by the ARISE Responsive Fund, in Viwandani APHRC partnered with U-Tena, an NGO that works to promote health and wellbeing through the exploration of performing arts and dance. There were a series of high-level consultation meetings with partners that resulted in collaborations with Child Fund and the Winnie Atieno Foundation in addressing challenges related to SWM and WASH services. The project engaged the community, government officials, nongovernment officials, performing artists, youth, women, land owners, local partners, and elected leaders in advocating for SWM and WASH services. Consultative meetings set a clear path for community outreach, stakeholder meetings, dialogues, artistic outreach, and committee consultative forums. From the consultative meeting process, we collaboratively identified the need to construct a solid waste collection and separation transfer station at the community level. This decision was validated by the community and solid waste workers, building consensus.
Community outreach was conducted with performing artists from June to September, 2023. The artists did a series of crowd moving performances with key messages on WASH and SWM. Together stakeholders collaboratively identified a SWM separation point. ARISE established an oversight committee including the senior chief, assistant chief, WASH and Health sub-county representatives, a ward administrator, village chairperson, youth representative, community health promoters, community-based organisation (CBO) representative, landowners, and representatives of persons with disabilities. Through dialogues, a marathon event and activities on Global Handwashing Day, people were informed of and educated about WASH and the SWM separation point.
Community activity on global handwashing and toilet day
Impacts
As a result of this intervention a common solid waste separation site was co-identified, co-validated and operationalized within Viwandani informal settlement and governance structures have been put in place to champion, advocate and support its use.
Through ARISE, the governance actors were made aware of the importance of responding to community needs. Community-Based Participatory Research (CBPR) processes improved accountability by bridging gaps between communities, researchers and policymakers. It also built and strengthened relationships between urban marginalized people and governance actors by creating new fora for connections and strengthening existing spaces for engagement between governance and community stakeholders.
Community dialogues
Lessons learned
Partnership is key in SWM and WASH: Key outcomes and activities would not have been achieved without collaboration and networking.
Magnet Theatre: The arts, particularly the use of theatre and visual arts, are a strong tool for awareness creation and engaging the community. Feedback is solicited and amplified hence the community is not only a consumer of information but also a generator of the same. It also gives community an opportunity to participate in addressing the challenges they are facing.
Key community focal persons: Identification and involvement of key focal persons is key in the success of any community initiative. Their understanding and willingness to support determines the success or the failure of the project.
Multi-disciplinarity at the local level: When community leaders in different fields/areas work closely together, it becomes possible and easier to identify a key challenge and seek solutions. Working closely, the leaders can begin to address the issues in the community at their level before they escalate to higher levels.
Community empowerment and accountability: When a community is empowered, they demand their rights. For example, the community was demanding quality living conditions and a clean environment from landowners, elected leaders, and local partners through U-Tena and other CBOs.
Responsiveness: The local stakeholders led by local political leaders and partners took the initiative to allocate space for waste collection points, expand the road network with proper drainage, and promised to bring affordable water to Viwandani.
Inclusion is key: All stakeholders from the community, national government, and county governments were engaged in discussions on SWM and WASH. This enhanced the uptake of implementation.
Formation of community committees
What’s next?
There is a need to continue supporting the community in reaching out to their leaders, where they can raise issues of concern.
SWM actors should collaboratively develop a long-term waste management plans that account for population growth, urbanization trends, and environmental sustainability.
There is a need to consider integrating informal waste pickers into formal waste management systems to improve livelihoods and resource efficiency.
There is a need for actors in SWM to invest in infrastructure such as waste collection points, transfer stations, and recycling facilities tailored to the specific needs and constraints of informal settlements.
Actors in the WASH sector should be involved in addressing SWM, as poor SWM affects WASH service delivery.
Thank you to Anthony Mwaniki, Louise Clark, Sweta Dash, Kate Hawkins, Nazia Islam, Jiban Karki, Nicholas Kyalo, Peter Mokaya, Leah Murphy, Anthony Mutuku Nthenge, Emilly Otieno, Hayley Stewart, Jackline Syonguvi, Joe Taylor and Sia Tengbe for developing and editing this output.
Authors: The George Institute for Global Health, India (TGI), with the ARISE Consortium
As part of ARISE, researchers from The George Institute (TGI), India worked with local partners and waste worker communities in Delhi and Andhra Pradesh to develop a survey to gather quantitative data on the health and wellbeing (H&WB) of waste workers. This census-style survey with 10,000 adult waste workers resulted in an increased understanding of the dynamics of waste worker communities, and a new source of data that community members can draw upon to influence policy and advocate for targeted interventions that address their unique challenges and aspirations.
Background
An estimated 1.5 million people are engaged in waste work in India, and yet, there has been no large-scale data driven study or evidence around the H&WB of waste workers on a national or state scale. However, many governance actors tend to demand quantifiable data for decision-making when waste workers approach them for interventions and/or grievance redressal.
Through ARISE, the research team at TGI identified the global and local gaps in the data pertaining to waste workers, and this was confirmed by local partner organisations and waste workers living in Delhi and Andhra Pradesh.
Waste workers in these informal settlements highlighted the importance of having data on their own health and wellbeing, and they wanted to have the numbers and statistics ready so that they could, “Speak the language of the governance actors in their conversations and negotiations with the governance actors.”
To help address this lack of data, between 2021 and 2022 the ARISE team began work with partner organisations and community members to create a simple survey questionnaire and develop the appropriate data collection methods to collect quantitative data around the H&WB of respondents in Delhi and Andhra Pradesh.
Starting in February 2023, researchers held regular training and reflection sessions with enumerators. Using a participatory action research (PAR) approach, these sessions aimed to ensure that enumerators understood how to conduct surveys with marginalised communities and to be respectful and sensitive to waste workers when conducting the surveys.
Between March and July 2023, preliminary data collection took place across eleven districts of Delhi and Andhra Pradesh. During the regular reflection sessions, the survey tool was continually refined to incorporate feedback from enumerators during the first phase of the survey.
For improved survey results, Enumerators were trained on social determinants of health using participatory research methods and regular presentations. The figure above depicts one such training sessions with enumerators using the “Power Walk” method.
Impact
The H&WB survey resulted in a set of comprehensive data from a diverse sample of 10,000 waste workers (4,200 women and 5,800 men), which has improved understanding of the dynamics of these waste worker communities who were otherwise not reflected in any national-level or state-level data.
The process of developing the survey and training enumerators from the waste worker community, as well as having access to precise evidence from the quantified data, has helped to empower community members and partner organisations and has strengthened their capabilities to influence policies and advocate for targeted interventions that address their unique challenges and aspirations.
On-going community action and advocacy with governance providers is taking place using the evidence gathered in the H&WB surveys. In Delhi, one of the enumerators told us about how the initial results from the survey have been used for action in their area:
“There are two primary concerns we have identified through the survey process: first is the need for Anganwadis (early childhood learning centres). For this we have also met the local Anganwadi Officer who will be visiting Bhalaswa Village (in Delhi). Through this, women and children will be able to avail health check-ups and nutritious meals, vaccinations and maternity scheme cards.
Second, is that we have demanded identity cards for waste picker friends in Yamuna Vihar in Delhi. Through this, waste pickers will be able to secure a space for waste segregation and pull-carts.”
The H&WBS was designed to illuminate the living and working conditions of informal waste workers. In the figure, a surveyor administers the survey outside the household premises of a waste working family
Lessons learned
For the H&WB survey process, we adopted a census-style approach, that included a broad range of data on, for example, demographics, education, occupational details, household assets, conditions and social participation, health status, menstrual health, water, sanitation, and hygiene (WASH), utilisation of health services, mental health, substance use, recreation, and perceptions of the social environment. This helped to ensure that diverse voices within communities were heard and represented.
The research team factored in contingencies such as periods of rain, extreme heat and/or heat waves, regional and religious in gauging access to communities. Timelines were adjusted according to these delays, and enumerators were given considerable flexibility to work without undue pressure.
For the research team, the H&WB survey has been an entry point into learning and working with quantitative data. The team has been working towards better data monitoring, cleaning and analysis in the process.
What next
Seeing the results of the H&WB surveys in these areas, other organisations and waste worker communities have expressed interest in replicating the survey in their own communities. For example, waste workers living in Shimla (one of our ARISE action sites) have reached out to TGI researchers to request a similar survey in their area.
The research team is finalising the H&WB survey report and planning ways to disseminate the findings with the community members and other stakeholders.
Acknowledgements
Thank you to Sweta Dash, Louise Clark, Kate Hawkins, Nazia Islam, Jiban Karki, Leah Murphy, Anthony Mwaniki, Hayley Stewart, Joe Taylor and Sia Tengbe for developing and editing this output.
Relevant resources:
Lakshmi J.K. et al. (2020) Planning the India health and well-being survey, ARISE Consortium,
Authors: The George Institute, India with the ARISE Consortium
Since 2019, ARISE researchers from The George Institute (TGI), India have worked with partner organisations and waste pickers in the informal settlements in Vijayawada-Guntur of Andhra Pradesh to identify and address priority areas to improve their health and wellbeing. During priority-setting activities in 2021, community members highlighted an urgent need for secure housing and set about identifying actions to address this. The process resulted in allocation of secure housing or land ownership to some community members and has helped establish better relationships between the community and governance actors.
Background
For waste workers in informal urban settlements of Vijayawada-Guntur, Andhra Pradesh, India, secure housing is not just a roof over one’s head but embodies dignity and security. While waste workers have historically faced threats of repeated displacement, this threat became much worse during and after the Covid-19 pandemic.
“Somehow get us housing, we can manage everything else” – Female waste picker, Vijayawada
“When I die, I do not want to be considered an unidentified body. I want to be taken to my own place and get my last rites done.” – Female waste picker, Dump yard in Guntur, Andhra Pradesh
As part of ARISE, TGI worked with waste pickers from Krishna Lanka and Vaddeswaram informal settlements, using the community-based participatory research (CBPR) approach, to understand and address the priorities of the waster worker communities. Between 2019 and 2021, ARISE TGI researchers held community meetings, interviews and focus group discussions with community members.
In September 2021, after Covid-19 restrictions had eased to a certain extent, researchers from TGI and our local partner organisation Dalit Bahujan Resource Centre (DBRC) undertook prioritisation exercises with the community members. The aim was to seek and centre the community members’ inputs for decision-making and accountability-seeking. From a range of identified priorities, housing emerged as the highly ranked issue for the community members.
Community members also highlighted the linkages between housing rights and health and well-being. The threat of repeated displacement greatly increased after the Covid-19 pandemic. In 2022, the waste workers in these informal settlements faced aggressive threats to their housing rights. Residents of Krishna Lanka were unfairly blamed as being carriers of the Coronavirus and were subsequently evicted from the area. Community members also repeatedly expressed how women, particularly young girls, were very vulnerable to sexual harassment due to lack of proper housing and sanitation.
The team realised that securing housing for the community members was the most crucial task at that moment. Researchers and DBRC worked towards better understanding processes for housing allocation, be it through engagements with the local secretariat office or through various housing entitlement schemes. DBRC also played a crucial role in facilitating dialogue between the community and governance actors throughout 2022 and 2023.They engaged in consistent follow-up, supporting the community to advocate for their and needs.
To further address this identified need, actions were identified and allocated to community members, researchers, and DBRC. Community members took steps to get their identification documentation completed, DBRC worked with the local secretariat office to get housing allocated, and the research team looked at the various schemes under which housing could be made available for the communities.
After numerous petitions and persistent efforts, the government responded by launching a mass drive to issue identity cards to community members. This was a significant step towards addressing their immediate housing needs, marking a pivotal moment in their struggle for stability and recognition.
Communities in Vaddeswaram showing their land ownership documents. Communities were allotted plots and government will be building houses for them.
Impact
In October – November 2022, 12 families from Krishna Lanka were allotted housing in Rajarajeswari peta, a neighbourhood in the city of Vijayawada, and 35 families are in the process of being allotted housing. And in 2023, 11 families living in Vaddeswaram were allotted plots in Amaravati, the capital city of Andhra Pradesh. However, 25 families are still waiting for housing due to bureaucratic delays and the requirement for mandatory identity cards. Whilst this has caused a great deal of distress for the community, TGI researchers and DBRC are supporting community members to obtain identity cards. However, the 2024 change in government has unfortunately halted the process as the new administration has yet to revisit and address this pressing issue.
The team and community members have encountered situations that required collective problem-solving. After allotment of houses in Krishna Lanka, the community was unexpectedly asked to pay INR 60,000 to the municipal corporation. While this was the subsidised rate decided by the authorities, it was a major setback for community members considering the myriad forms of deprivation and insecurities they were already regularly facing. The most viable solution was to rely on the Scheduled caste and Scheduled Tribe Sub-Plan (SCSP/TCP) for a ‘Direct Benefit Transfer’ (DBT) to community members. After several meetings with Tribal Welfare Department officials, multiple visits, and petitions by the community members, a one-time DBT was provided to all the people who were allotted housing, and they were finally able to move to their houses.
This process – from the identification of housing as a priority to working together to get governance actors to allocate housing – has helped ARISE TGI researchers to solidify relationships with the community, establish our commitment to the embeddedness of research and action, and strengthen trust with the community.
The process also improved access to information, enabling waste workers to navigate the bureaucratic processes involved in obtaining housing or any other benefits from governments in future.
Importantly, it has established pathways for relationships between the community and governance actors. Community members have realised that there are ways to voice their grievances, demand their rights, and get action from the governance actors.
Observing the community’s persistence, government officials started paying more attention to their issues and have even sought their involvement in various government activities, including introducing new initiatives, awareness campaigns, and community meetings.
Communities from Krishna Lanka receiving the one-time amount disbursed from the tribal department for housing allotment.
Lessons
Through this process, ARISE researchers, community members and governance actors learned the following lessons:
Recognising housing as a priority, and improved understanding of linking housing rights to health and well-being.
Improved access to information, enabling waste pickers to navigate the bureaucratic processes involved in obtaining housing or any other benefits from governments in future.
Secure housing can provide women with a sense of ownership and control over their living space. It also gives them a sense of permanency and gives them the confidence that they are leaving some asset behind for the next generation.
What next
The connections established with governance actors during this process have been maintained by community members, who regularly visit government offices to address their ongoing concerns, including:
Addressing unintended consequences: In certain cases, the allotted housing was suboptimal and lacked thorough consideration. Community members had little choice about the location and type of housing they received. Some homes had water issues and security risks; others were in locations further away from people’s livelihoods, affecting their ability to get to work. The team is working towards ameliorating these issues and understanding scope for further developments in this area.
Securing utilities: The community has come together to take collective action in securing reliable access to clean water and electricity, resources that were not assured by the local authorities or utility providers when their housing was allocated.
Enhancing advocacy: Building on their past successes, the community is refining its strategies to tackle other systemic issues and assert their rights. Community-led meetings are proving to be invaluable for sharing information and planning future actions.
Sustaining support: DBRC and the ARIISE TGI research team continue to support the community to navigate emerging challenges and to facilitate deeper engagement with governance actors.
Acknowledgements
Thank you to Sweta Dash, Louise Clark, Kate Hawkins, Nazia Islam, Jiban Karki, Leah Murphy, Anthony Mwaniki, Hayley Stewart, Joe Taylor and Sia Tengbe for developing and editing this output.
