Centring Disability in the Academy: Research Priorities, Knowledge Exchange and Career Development by Rhea Halsey, Ankita Mishra, Christina Lee, and Dan Goodley

The slides for the presentation can be found here.

Abstract 

What new forms of thinking, practice and relationality does disability bring to a research project? We address this question with a focus on research priorities, knowledge exchange, and the career development of professional service staff members and researchers.

Reflecting on the emerging work of Disability Matters, we highlight the opportunities that arise from placing disability at the centre of research activity. Disability Matters is a pan-national programme spanning the UK, Singapore, India, Australia and Canada that aims at shifting health and science research by placing disability at the centre of inquiry. Our paper will provide four short presentations on the phases of research being led by the University of Sheffield within Disability Matters. 

We discuss the co-production and participatory action research strategies in our phase on “Health Priorities", to generate a better understanding of the common and differential health priorities of disabled people across four continents. We present our ambitious plans to transform Equality, Diversity and Inclusion through a proper engagement with disability in our phase on “Knowledge Exchange”, and outline our aims to raise the capacities of disabled and disability-positive early career health researchers in the “Development” phase. Finally, we reflect on our work with professional service colleagues and the ways we are generating opportunities for supporting and developing research that are in tune with disability politics.

Our conference paper takes the form of a conversation between members of the Disability Matters programme team based at the University of Sheffield. In choosing dialogue over a traditional academic paper format, we are deliberately cripping the convention of the conference presentation, refusing the single-authored disembodied voice that dominates conventional academic knowledge production in favour of something that is relational, situated and collaborative. 

What new forms of thinking, practice and relationality does disability bring to a research project?

Feminist scholars have recognised conversation as a way of making meaning collaboratively rather than extracting knowledge from individual subjects in research (Belenky et al., 1986). We draw on this tradition but also situate our use of conversation within critical disability studies and the practice of cripping to unsettle normative assumptions about how knowledge should be produced and presented. To crip an academic presentation is to ask how the conventions of scholarly communication, such as the polished sole-authored paper, the tightly timed panel, the abled performer at the podium, work to exclude disabled bodyminds and the relational, interdependent ways in which many of us actually do our work. 

Conversation as a method allows us to make visible what is usually rendered invisible: the collective labour behind research outputs, the distinct positionalities, expertise and labour that each member of our team brings to the programme, the care, friction and negotiation that sustains collaborative work. What follows is a transcript of our exchange in which we reflect on our roles, our achievements and our challenges of doing disability research within higher education institutions through our programme: Disability Matters. 

Dan: Can you tell me about your role and key achievements in Disability Matters?

Rhea: 
I am the Project Manager for Disability Matters and I am responsible for all things programme logistics, from planning, budget management, liaising with partners and supporting key administrative processes. Essentially, I facilitate the doing of the research. 

For me, there have been several key achievements since we started in 2023. We experimented with an inclusive approach to recruitment in hiring our two researchers in Sheffield. I am really pleased with how we’ve established a sense of team built on shared values and ways of working, which allows us to be open with each other and centre joy and care in our work.

Over the last few years I have successfully built a programme governance structure from the ground up, which included onboarding fifteen external partners and setting up regular board meetings. I am also proud of the events we have run so far and my role in supporting them. 

Ankita: 
I am the Research Associate for Health Priorities leading Phase 2 of the Disability Matters programme where we are asking: what are the health priorities of disabled people in Australia, Canada, India, Singapore and the UK?

In responding to this question, we intentionally turned to India to begin with, the only geopolitical South country context in our programme. So a significant part of my work so far has been building genuine, collaborative relationships with our partner Disabled People's Organisations in India - AADI and Swabhiman based in Delhi and Bhubaneswar, respectively. In India, we have been working closely with our co-researcher collective based at AADI and Swabhiman, and from the very beginning we co-designed the process of doing this research together. That included developing multilingual, multimodal ethics processes, since there are multiple languages at play, namely Hindi, Odia, Indian Sign Language, including how information about the project was shared, navigating ongoing consent and the like. A year-long process of relationship building and co-designing the research together translated into 6 months of intensive engagement with more than 120 disabled people in India through 23 multimodal creative workshops spanning rural, urban, Indigenous, disaster-prone, and urban poverty contexts covering 7000 miles within the country alone (and we only touched one state in the east and the National Capital Region of Delhi). 

Alongside the India strand, I have been developing partnerships with DPOs in other country contexts and building context-responsive participatory research through ongoing collaboration and relationship building. 

And along with my brilliant colleagues Christina and Rhea, we have been contributing to community building within our Sheffield team, the international researcher team, with our partner DPOs, with disability/disability positive communities beyond the programme through online courses as well as co-curating meaningful spaces for connection, care, writing and sharing.

Christina: 
I am the Research Associate for Knowledge Exchange and the lead for Phase 7, Transforming EDI Through Disability. In this phase, we ask the question: What transformative knowledge pertaining to equity, diversity and inclusion can be generated through a focus on anti-ableist and anti-disablist practice? Or to put it simply, What exciting changes can be made in learning to make research more equal for everyone?

As part of my work for phase 7 of the programme, I lead a series of town hall events and workshops to generate knowledge exchange that informs the policy, strategy, and practice of inclusive health research. 

The town halls will disseminate key research findings from each of the phases of the programme and spotlight the disabled researchers and disabled people’s organisations. Our first online town hall was held in September 2025, which featured leading disability researchers and was attended by over 50 people, including delegates from funders like Wellcome, NIHR, and UKRI, national DPOs, EDI leads, as well as international researchers from Canada, Switzerland, Spain, Australia, and India.

The Knowledge Exchange workshops bring together delegates across sectors, from Disabled People’s Organisations, senior leaders at universities, researchers, equity, diversity, and inclusion (EDI) teams, charities/third sector organisations, health organisations, policymakers and funders at the workshops to explore key issues around disability and inclusion in health and reimagine an inclusive future of health research. They offer a space for extended discussions with stakeholders about centring disability and disabled people in EDI and research.

Our first knowledge exchange took place in March last month, organised in collaboration with colleagues from the Wellcome Anti-Ableist Research Culture (WAARC) team. The theme of the workshop was on Cripping Knowledge Exchange, looking at creative inclusive research methods and how these can make knowledge exchange more accessible to disabled people. We have a second workshop planned for the end of April, which will focus on Inclusive Research Cultures and share findings from WAARC with stakeholders.

Dan: What work was involved and challenges you faced in meeting these achievements? 

Rhea: 
A valid question to ask may be “what is a research Project Manager anyway?”. 

One challenge for me has been figuring out the possibilities of a role like mine and working to establish its importance in the wider sector of research. 
In the UK context my role is labelled as “professional services” or “non academic”, which does carry with it certain perceptions. For example, I’m quite aware that on another project I may not have been given the space in which to learn and speak alongside my colleagues here today. I believe this kind of collaborative working has potential and should be more common. 

Meeting other research professionals, both through internal and external networks, has helped me to gain a sense of my role, its value and place within the field. 

Secondly, “what does it mean to deliver a disability project in higher education right now?”. It means navigating the friction between being coveted as a positive case study in the university EDI portfolio versus the inaccessible reality of actually doing this work. 

By just existing as a disability project, we technically violate formal institutional policy on a regular basis, and the level of bureaucratic labour this generates is significant. As we know, inclusive practice can require time, money and thinking outside the normative box. However, in the current climate of financial retraction, we find ourselves having to extensively justify each cost or adjustment relating to access and disability. This is to the extent in which I feel we are having to “radically” challenge policy, even if we ourselves within the project do not consider what we are asking for as “radical”. To be a successful disability project, to do the work you want to do, is having to take on the role of “disabled killjoy”. Considering the level of work this asks of us, I would say all disability projects of a certain size would require a role like mine just to manage this workload alone. 

I still think the university is a great place to do disability research, and it’s because I care about this space, that I recognise the problems and push for the university to do better. 

Ankita: 
Doing research that is genuinely participatory, relational, feminist, decolonial, anti-ableist and anti-racist within a colonial neoliberal ableist institution is work I deeply care about. But I think we owe it to the communities we work with to be honest about behind-the-scenes labour of polished outputs that institutions celebrate as impact. 

A significant challenge is ‘systemic and bureaucratic violence’. Risk assessments, ethics processes, collaboration agreements are often framed as neutral administrative procedures. But for those of us at the intersections of race, immigration status, gender, disability, neurodivergence, chronic illness, they function as sites of institutional surveillance. They scrutinise us and wear us out. After a year of deep relational work with our partners, for them to then receive a collaboration agreement written in hostile legal language and taking about 8 months to get signed, that dissonance is real. 

The existing systems are ill-equipped for collaborative participatory research and while navigating them I think of myself as being ‘administratively disabled’ alongside being a chronically ill/disabled woman of colour in an institution that was never designed for researchers like us or the communities we work with and come from; not least because many of us doing this work are among the most precariously employed within the very institutions we critique.

Then there is also the question of time. Institutional time and community time are not the same, nor is my crip time. Translating between these temporalities, between languages, between epistemologies, between ways of being. That translation work is largely invisible and exhausting as is managing access needs, navigating accommodations, all while trying to do the actual work.

There’s also the weight of being an in-betweener, constantly questioning whether the work truly serves our communities or whether despite our best intentions, it still primarily benefits academic careers. Living with that complicity means holding a genuine commitment to decolonial, participatory, anti racist, anti ableist, feminist ethics, while simultaneously being dependent on funding structures and institutional timelines that don’t always reflect those values. Can the master’s tools ever dismantle the master’s house? 

This is where humility and refusal as ethical commitments become essential, staying with not knowing and recognising when to stop. That also means learning to sit with witnessing ongoing harm while holding on to the hope that change is possible, through our communities, colleagues and co-conspirators committed to doing this work differently.

Christina:
While it is always a joy to meet and hear about the wonderful work that disabled researchers and disability advocates are doing, a lot of unseen “backstage” labour goes into organising events, whether online, in-person or hybrid. Behind every seemingly smooth online event is months of preparation and hours of admin: From writing out a proposal, and sending out email invitations and following up emails to confirm attendance, to preparing a script for the event, setting up event pages and promoting the event on social media. These small, administrative tasks can stack up quickly and become overwhelming, especially when you are a disabled person organising multiple events and juggling other writing commitments and deadlines at the same time. So I would like to take a moment to express gratitude for the immense work that the organisers of the Leeds conference have put into making this event possible and bringing us together today.

As a programme, we are committed to making our events as accessible as possible. This includes providing British sign language interpreters, preparing accessible easy read formats of event materials, and offering honoraria to guest speakers for their contributions and labour. However, this can mean going against institutional structures and the bureaucratic hurdles that come with them. University processes for setting up vendors and processing payment can take time and cause delays. Our programme manager Rhea’s support has been vital in navigating the endless forms and processes involved. Working with a team that understands disability means that there is no need to explain or justify why we need certain access accommodations for our events or our colleagues. The access intimacy and shared understanding about access across the whole international team have been incredible and key to making our work possible. The hidden disabled expertise and knowledge behind research outputs and successful engagement events highlight once again why we need to think about inclusion and research culture more broadly as a system including colleagues across different academic and non-academic roles and ensure that everyone is valued and supported.

Concluding thoughts (Dan)

Working as PI of this project is a pleasure. There is a real sense of togetherness and community which makes our work feel interdependent, alive and always hopeful. It is worth acknowledging the challenges of landing creative methods, emancipatory disability research and collaboration with DPOs in the University.  I would suggest it is not about hacking university bureaucracy: it's about appropriating, rolling with, charming, smoothing and mainly labouring with it - working alongside excellent researchers and equally excellent professional services colleagues from finance, contracts, HR, research support, procurement, public engagement and so on. A highlight of the work we are doing relates to the development of the careers not only of our researchers but also our Programme Manager (see slide 20). And critical disability studies offers the potentially perfect interdisciplinary space for rethinking how we build research culture in our universities that puts disabled people as colleagues as the centre of this work.