When people with disabilities drive research

15 March 2016

I was recently fortunate enough to be leading the facilitation of a workshop in Uganda for our Market Based Solutions for the Extreme Poor project, an initiative which is exploring which market-based solutions can work for people who face marginalisation due to multiple factors such as caste, ethnicity, gender and HIV-status, and has a particular focus on disability.  As a result, I gained some valuable insight into making participatory workshops more inclusive, which I wanted to share and discuss. 

This photo shows a peer researcher and a research assistant doing a real life practice run of collecting a story as part of the Uganda workshop activities for the Market Based Solutions for the Extreme Poor project.
This photo shows a peer researcher and a research assistant doing a real life practice run of collecting a story as part of the workshop activities, behind which there was an ethos ‘learning by doing’. 

A key aim of this project is to develop a deeper understanding of the barriers and opportunities for those with physical and sensory disabilities   in order to build sustainable livelihoods through market-based solutions. To achieve this our starting point needs to be listening to people’s life stories, in their own words, language and context.

We decided that a peer-research approach  to collecting these life stories was deemed much more appropriate for laying the foundations on which the participatory research strand of the project will move forward in the coming months. Ultimately, those with disabilities from the same community can relate much closer to other people living similar circumstances.

The workshop welcomed 40 persons from Kawempe and Gulu districts who came together to learn about the possibilities life-stories bring to a research process. This aim was to understand the power and depth that stories bring in contrast to other less personal data collection tools, such as surveys. A key objective was to convey the importance of trust and connection as a basis for generating a rich story in which emotions are expressed and reflected throughout the narrative and cause-effect dynamics surfaced.  The relevance of letting life stories to emerge not shaped by predetermined questions, and which allow people to put emphasis on what they deemed more relevant.

For me, it was a deeply personal and professional learning journey in many ways. However, in this blog I reflect on features of this workshop which opened the doors to a diverse group of people, with a range of impairments.

My reflections on how to make participatory workshops more inclusive

When thinking about how to do this there were many elements to factor in. For example, participatory workshops often rely on scoring, card-sorting, colour coding, diagrams, socio-dramas, and games or dancing, amongst other activities.

Questions like this, lingered in my mind:

  • What are the sets of skills, the backgrounds, and the shared or conflicting identities which participants bring into a participatory process?
  • How best to strike the right balance of activities when a high proportion of the participants don’t read nor write, a few are visually impaired, others have hearing and speech impairments, and the great majority have mobility impairments?
  • Moreover, how should we enable a process which engages both men and women, with an age range of 20 to 55 years?

Knowing specific requirements of every individual at the workshop

I must emphasise that this workshop was only possible due to the skilled leadership of the national and regional Disabled Peoples Organisations (DPOs) in Uganda and the ADD International and Uganda programme colleagues.

The leaders of DPOs, knowing their members very well, shared with the organisers the requirements for each and every one of them. As the great majority of participants had never heard about ADD before, the mere presence of focal points throughout the workshop provided that confidence and a sense of being in a safe space. Staff from ADD took the time to listen, respond to the requirements and go beyond the ‘extra mile’.

Using an appropriate venue

Finding a venue with the accessibility requirements was the first challenge, but the colleagues certainly nailed it as participants were moving around the space with minimum constraints, and activities could be carried out appropriately. The hotel was accommodating in many way, its setting was not an alienating environment for the participants, and one of ADD’s staff  members was attentive to them throughout the whole week in case of any sort of confusion.

Making provisions for (serious) care

Another great feature was hiring nannies for the young mothers. Not only were the mums able to come to the workshop, the fact that their babies were happy and well cared for allowed them to meaningfully participate and concentrate on the learning process. There was also openness to pay the costs for those people who had to come with their own full-time carer.

Facilitators Fred and Simon went beyond the task of translating and were truly effective communicators and co-facilitators of the process. As for me, I just had to keep reminding myself to ‘let go’, reflect and adapt the plan according to the circumstances each day; I learnt so much by leaving space for the unpredictable.

Implications for Agenda 2030 and the implementation of the SDGs

The 2030 Agenda for Sustainable Development outcome document recognises the value of participatory processes, and calls for “all people” to participate in the implementation and review of the Sustainable Development Goals (p. 2). As development actors start to put the agenda into practice, it will be important for them to question how far their plans are aiming for meaningful inclusion of all people, and what actions are being taken to tackle the barriers that exclude some groups.

So far, our experience goes some way to showing how simple but ingenious adjustments can open up participatory processes to a much more diverse group of people.

Consequently, they engender a richer range of insights on the realities of extreme poverty and marginalisation: insights which are essential for development that is more tangible, less bureaucratic, and more human-centred.

Image credit: Veronica Vennah Kagona

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