Our collaboration began as so many fieldwork relationships do: serendipitously. We first met at a book discussion — an event unrelated to the research. At the time, Shajeela had just arrived in Bangalore to begin her PhD on the experiences and care trajectories of people with spinal cord injuries. Lakshmi, who had been living with quadriplegia for seventeen years after an accident, was attending the event as well. Our initial conversation led to another meeting, and soon we became friends. This friendship naturally evolved into a researcher–research participant relationship. When Shajeela began her ethnographic fieldwork, Lakshmi agreed to join her as a research assistant.

Socializing Through Bodily Care

Some of our experiences will be recognizable to many or all who engage in collaborative ethnography. A few are more specific to working together with disability. For us, bodily care, touch, and physical accessibility and mobility were crucial to doing research together. As we grew closer, physical interactions, such as Shajeela assisting with Lakshmi’s care, became a natural extension of our relationship.

Lifting Lakshmi to adjust her position and transferring her to the wheelchair required physical strength, and Lakshmi noticed how Shajeela hit the gym with renewed dedication, ensuring she was fit enough to support her. Similarly, during interviews, Lakshmi’s subtle cues — flushed cheeks, forehead sweat — signaled the need for a break. These unspoken understandings wove physical care into the rhythm of our fieldwork. We communicated a lot about what this physical care entailed, and it was through this care and communication that we built trust.

One thing we discussed from quite early on was the concept of ‘skin hunger’, noticing how touch is crucial as it folds into socializing and feeling thought of, included, cared for, and valued. As Lakshmi could only sense touch above her shoulders, Shajeela would touch her face, squeeze her shoulder, kiss her forehead or hold her face. Though such interactions might feel daunting in other contexts, they became a meaningful way for us to connect, especially when saying goodbye. These interactions weren’t just practical; they were social and emotional, built on understanding each other’s needs.

Mutual Learning

We were both insiders and outsiders in this research. Shajeela brought academic preparation and ethnographic methods; Lakshmi brought lived experience with spinal cord injury. This dynamic meant we were constantly learning from each other.

Ethnographers in the field are often training research assistants in doing ethnography, including conducting and analyzing interviews. We found that in semi-structured interviews, the “semi” part wasn’t just about flexibility in questioning — it was also about who we were and how we approached each conversation. Lakshmi brought her own insights and ways of engaging, shaped by her experience.

Our collaboration was an iterative process: explaining, reflecting, and adjusting. We discussed sensitive moments, like how to respond when participants became emotional. These conversations refined our approach and deepened our understanding. We found that working on this project together was a process of mutual learning.

Navigating the Relationship

Balancing friendship and professional roles required ongoing communication. Sometimes, switching between friend and research assistant felt awkward — though the comfort and joy in our friendship built early on through socialization through bodily care helped us navigate this balance.

We made space to be awkward and acknowledged the power dynamics that are present. As we navigated between different roles, open discussions helped us to continuously build trust. The relationship became more intricate because Lakshmi was not only a research assistant but also a research participant. For Shajeela, analyzing emerging patterns from interviews often intersected with her observations of Lakshmi’s daily life, leading to a deeper understanding of other participants. Any number of conversations we were having could become fieldnotes. While Lakshmi regularly expressed that all of this could become part of the research, we also kept discussing this and checking in to what extent that was still alright. Regular check-ins ensured we stayed aligned and respected each other’s boundaries.

Fieldwork On and With Disability

Involving someone with a disability in a research project, particularly when they are from the community you are studying, has broader implications for methodology and ethics in social science research. First and foremost, it challenges the traditional power dynamics between researcher and participant. By collaborating closely with someone who has lived experience, the research process becomes more inclusive and reflective of the community’s needs and perspectives. In our case, this collaboration transformed the project, offering deeper insights into the daily realities of living with spinal cord injuries.

This approach also introduces a participatory research model, where those who are typically subjects of the research are given agency in shaping its direction. Through our collaboration, we were able to incorporate Lakshmi’s experiential expertise into the research, ensuring that accessibility concerns, emotional wellbeing, and community needs were not only represented but prioritized. It also allowed us to question and address societal structures that often exclude people with disabilities from academic and professional spaces.

Moreover, this collaboration helped balance the scales in terms of who has access to knowledge production. Typically, research subjects contribute to the data but are not involved in the analysis or conclusions. But Lakshmi straddled both worlds as a participant and a contributor, and through our iterative reflections we ensured the research remained grounded in the real-world experiences of those it sought to represent.

Collaborative fieldwork on and with disability, we have found, makes research more inclusive and participatory: not something done to a community but with it. And ultimately, this leads to richer, more nuanced outcomes that reflect the true complexity of the lives being studied.

This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 851437)