Including the most marginalised people in development research and programming is crucial to achieving the compelling global call to ‘leave no-one behind’. However, this is not always straightforward or easy to achieve. Our research to date has found that there are time and resourcing needs, barriers from attitudes and power dynamics, and intrinsic tensions that must be navigated to build genuinely inclusive processes.
Additional attention is needed for ethical and effective practices when collaborating with those living in the most difficult circumstances, where partners and participants often face intersecting inequalities and high levels of discrimination. This is particularly acute in crises such as conflict-affected contexts, where the particular problems faced by the most vulnerable and marginalised people are exacerbated, and there may be breakdown of support systems.
Fieldwork on lived experiences
“Bringing persons with disabilities, with different disabilities, together, to prepare them for work ahead is a rare case. It recognises our presence as human beings who can serve the community.” (Peer Researcher)
Our recent fieldwork in Soroti, Uganda reminded us of the resourcing and relational adaptions necessary to move beyond ‘good intentions’ to practically achieving meaningful participation of the most excluded people. This research is part of the Foreign, Commonwealth and Development Office (FCDO) funded Better Assistance in Crises (BASIC) Research programme. Our research project explores the most marginalised people’s experiences when trying to access social assistance, by collaborating with local partners in Uganda and the Kurdistan Region of Iraq – contexts of long-term conflict, displacement, and recurrent climate shocks. It also aims to generate practical knowledge on how to build safer, more inclusive, dignified, and effective responses from social assistance providers. Based on our recent fieldwork in Uganda, below are four reflections to consider when conducting similar research:
1. Engaging suitable peer researchers and participants
Reaching the most marginalised participants takes extra effort. We chose our local research partners because they have a track record of participatory research and good local networks. Our main focus is on people with disabilities due to their typically precarious life circumstances. In addition, the local partners identified widows and single mothers; children heads of households or orphans; and older people without work-based pensions, especially those with children to support, as high contextual priority groups. There are many of such vulnerable people in Uganda due the ‘missing’ middle generations in the post-conflict setting, alongside high HIV/AIDS prevalence.
Six local peer researchers of mixed ages were recruited (four women and two men). Four are disabled with hearing, visual, physical and psycho-social impairments, and other marginalised groups are also represented (widows, orphans and older people). During fieldwork, we trained the local research team and peer researchers, and then, with them, facilitated a participatory research process with seven disabled participants. The local team was briefed to recruit those beyond the ‘usual suspects’ to join the research activities, which required sufficient time to identify and encourage those who generally wouldn’t take part. Although a reasonably diverse group was engaged, there was a slight majority of participants with physical impairments compared with visual and hearing impairments, and no one intellectually impaired. This reflected local assumptions about people’s capacities to participate in the project, as well as the commonly manifested hierarchy of impairment.
2. Accommodating individual needs in situ
Adequately accommodating individual needs was a crucial aspect of logistical organisation and research activities given our disability focus. As anticipated, in addition to Ateso language translators, a sign language interpreter and other personal assistants were provided as needed (e.g. for blind participants).
Unanticipated accommodations were also made. While the venue was relatively physically accessible – with ground-level meeting rooms and ramps throughout – some pathways were uneven or unpaved. One participant couldn’t get his tricycle through the door and had to crawl to his chair on arrival, which was highly undignified. When we asked if we could provide further support, he said he had a wheelchair at home. We then arranged to transport it, although this could have been organised prior to the start of research activities.
Another situational challenge was that one deaf participant did not understand sign language, so his daughter had to be called for communication support. In several cases, older children attended to support their relatives. One woman (a deaf peer researcher) had a young baby with her, which restricted her focus, so childcare was arranged in response. It is clearly important to enquire about specific needs in advance to avoid such difficulties, but accommodation should also be an ongoing concern as part of the ethics of care.
3. Realism about the costs of disability inclusion
As well as the logistics of accommodating diverse needs, an additional reflection is that disability inclusion is unavoidably costly. The local team suggested a residential workshop due to travel difficulties for those from outlying rural areas. Given the number of peer researchers and participants, and their diverse assistance requirements, this meant we had to cover accommodation, meals, drinks, and transport costs for over twenty people. These costs exceeded the local partner’s budget, possibly because facilitating participatory research with people with disabilities was a new experience. Several participants expressed appreciation for the accommodations, reporting that personal supporters were often not funded, leaving disabled people having to pay themselves or unable to join events. Sufficient resourcing is crucial to overcoming economic barriers that would otherwise make meaningful disability inclusion unachievable.
4. Establishing inclusive interactive contexts
Relational dynamics are central to participatory research. This means it is important to spend sufficient time establishing an enabling communication environment and inclusive group dynamics both for ethical relations and deeper research insights. Participatory facilitators must take an active role in generating supportive and collaborative dynamics to avoid some participants dominating the process. This can include tackling negative attitudes and behaviours within a group. For example, one women with a non-physical impairment became upset after overhearing another participant questioning her presence – impairment discrimination she had previously experienced within disability forums. Team members spent time talking it through with her, and we re-emphasised to everyone the importance of inclusion during groupwork. This contributed nuanced research insight about disability inclusion, and the kind of input needed to generate group solidarity as foundation for collective action.
Conclusion
Our fieldwork emphasised that participatory research can only be meaningfully disability inclusive if the need for additional resourcing is recognised, and the time costs and expenses are covered. Investing resources in activities that build a sense of unity, group agency and purpose is important for this kind of research. A trusting environment that accommodates individual needs is necessary for participants to feel comfortable sharing stories and collaborating with others who have had similar experiences. The process should not be rushed, especially with marginalised groups exploring sensitive issues. Inclusive, group-based, participatory methodologies (including visual, creative and narrative methods and different communication modes) can support meaningful participation. This is needed to better understand and overcome the emotional, relational and contextual barriers to disability inclusion in social protection. These reflections will continue to be embedded throughout our BASIC Research project, as we continue our fieldwork in the Kurdistan Region of Iraq and Uganda.