Our Research Approach
Nothing About Us Without Us.
‘Nothing About Us Without Us’ has been the starting point and the organising framework for this project. The power of this slogan as a guiding principle of the disability rights movement comes, in Charlton’s words, ‘…from its location of the source of many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice’ (Charlton 1998: 3). This project has been developed in response to a funding call launched by the United Kingdom’s Arts and Humanities Research Council working in partnership with the UN Partnership to Promote the Rights of Persons with Disabilities Multi Partner Trust Fund. It seeks to build the evidence base about the impact of the coronavirus pandemic on persons with disabilities in Ukraine.
‘Inclusive disability research’ remains a broad concept that may, as Smith-Merry notes (2020), cover a range of approaches, from research projects with the ‘nominal’ representation of persons with disability on advisory boards or steering groups, to studies fully conceived and developed by persons with disabilities with academic researchers carrying out such studies as needed and as directed. The key objective of building the evidence base about the impact of COVID-19 on persons with disabilities in Ukraine demanded a truly collaborative approach. Our project has been designed and implemented in close partnership between persons with disabilities and social science researchers.
We are aware of the continuing debates around the issues of positionality and intersectionality: every person with disability experiences dynamic and often interlocking systems of oppression (based on their disability, gender, sexuality, ethnicity, nationality, age, location) which are unique to them and their circumstances; their response and resistance to these systems would similarly be different. However, as Charlton noted back in 1998, the key point here is that ‘people with disabilities are oppressed and resist this oppression individually and collectively in ways that are generalizable’ (Charlton 1998: 5). Participatory research offers tool to explore both individual and collective strategies and narratives of such resistance. The value of meaningful participation is also recognized by the UN Convention on the Rights of Persons with Disabilities and is further clarified in General Commend No. 7 issued by the UN Committee on the Rights of Persons ‘On the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention’.
Co-researching in dialogue.
We are aware of various approaches to describe different actors, or partners, within the context of participatory community-based research. Smith-Merry, for example, in her overview of inclusive disability research refers to ‘co-researchers’ as ‘people with a lived experience of disability engaging with research’ (Smith-Merry 2020: 1936). We saw such a delineation of ‘co-researchers’ working with (or juxtaposed against) ‘researchers’ as not fully reflective of the ethos of dialogue and togetherness (which we review below) in the context of our project. We thought of ourselves as co-researchers – all of us - notwithstanding our practitioner and/or academic backgrounds. However, we were also aware that we brought different sets of skills and experiences to the project; so, we did differentiate between academic co-researchers and disability activist co-researchers – to acknowledge our diverse contributions without creating or reinforcing any hierarchies of belonging, knowledge, expertise or experience.
Dialogue remained a key foundational principle for everyone involved in this project: we were in dialogue with ourselves (in reflecting on our own subjectivity in relation to the project, disability, and the pandemic), with each other, and with our research participants. Dialogue allowed for different stories – our own and of our participants – to come together, become entangled and spark up new thoughts; it allowed us to bring powerful and moving voices of our participants into conversations about the fundamental questions of belonging, recognition, equality, and resilience. It set the space for encounter and for response, for turning towards and not turning away. Conceptually, we placed the aspirations of the disability movement in Ukraine for equality, justice, and recognition in dialogue with our research participants’ knowledge and their lived experiences, and with the existing and emerging academic knowledge in this field (bearing in mind the dynamic research landscape in relation to the impact of the pandemic on people with disabilities).
Even though we started with the premise of this being a participatory research project through and through, from formulating research questions to developing a dissemination strategy, we were acutely aware that, in reality, ‘there is no rule book for PAR’ (Rappaport 2020: xviii, see also Aldridge 2020: 1920). The ‘rule book’ for this research project evolved over time and based on the open lines of communication, respect, dialogue, and mutual and individual reflection. We tried from the very start to cultivate and foster and take responsibility for what can be described as ‘togetherness’ - we were planning, working, revising, reflecting and (re)-planning again together. At the same time, we have been aware that our capacities (including access to funding, time, communication technologies) and responsibilities (to the project, towards each other, our research participants, and wider communities) – were complexly and differently situated in time and place. Our awareness of these differences helped us navigate a variety of divides. Our ‘situated togetherness’ set the space for new conversations and new synergies; it was another foundational principle that kept us going.
Our project has been conceived as both inclusive and emancipatory. By relying on dialogue to work together we aim to better understand how COVID-19 and pandemic responses amplified existing and generated new sets of injustices and inequalities for persons with disabilities, and how they can be challenged and resisted. The key objective is to ensure that rigorous empirical research (conducted in a very specific context of COVID-19 realities) would support existing and help develop new political strategies for the disability activism in Ukraine. We also believe that developing emplaced and local research capacity and skills is key and have therefore planned for and delivered a series of training opportunities for our disability activist co-researchers. The emancipatory orientation of our project was inspired by some of the questions posed by Rappaport in her narrative of Fals Borda’s development as one of the key activist researchers in the history of participatory research: What does it mean to create relationships of equality in research? How can serious research be coupled with progressive political objectives? How should social science be used to resolve violent conflict? (Rappaport 2020: xxii).