Depathologising research culture

• Context

• Objectives

• Methodology

• Ethics

Context

Universities are notoriously elitist places. If you are black, female, working class, queer or disabled you might often feel and think that the university has not been designed with you in mind. Over the last few decades, universities have embraced Equality, Diversity and Inclusion (EDI); and disability and neurodivergence have become increasingly recognised by universities. We are witnessing a global backlash against EDI, with many disabled/neurodivergent academics and professional services colleagues experiencing heightened anxiety, fear and exclusion. 

Too often disability and EDI are treated as bureaucratic problems to be solved by policies, training  and awareness raising. These responses are important but we believe universities are missing a trick. A growing body of research, arts and activism - critical disability studies -  recognises disability/neurodivergence as blue skies concepts in their own right; with the potential to help us rethink how we create university research cultures that are truly inclusive. Over the last three years members of our team have proposed the idea of depathologisation: a concept, method, attitude and approach that sits with disability as an opportunity to rethink the university. This project extends this idea for the first time.

We will focus on university research culture and the key people involved assisted by disabled people’s organisations and disabled creatives. We will bring together disabled and neurodivergent researchers (including early career researchers and those on fixed contracts) and professional services colleagues (ranging from HR, Occupational Health, administration, legal, contracts) to work alongside disabled people’s organisations and disabled creatives to rethink research culture together. Our inquiry will work with a novel theoretical approach - depathologisation - which reframes how we typically understand disability (as a problem or pathology) and moves us into an exciting new imagination where disability is understood as an opportunity.

Objectives

Our research team of non-disabled, disabled, neurodivergent and chronically ill researchers will address five objectives

1. To explore the ways in which disabled researchers and research professionals experience disability as de/pathology in the university 
2. To experiment with the conceptual, practical and philosophical possibilities offered by depathologisation to rethink the university
3. What work with an international group of key researchers, philosophers, theorists and research professionals to find the best methods for rethinking the university.
4. To reinvigorate debates, dialogues and relationships between disabled researchers and research professionals
5. To explore diverse media of illustration, film, gaming and music as modes of capturing the project’s ideas for depathologisation of the university.

Empirically, we will generate data in collaboration with disabled academics and professional services colleagues, disabled people’s organisations and disabled creatives ranging from stories, interviews, experimental testbeds, depictions of future universities, pieces of art, as well as film, illustration, gaming and music. We address the tendency to ignore disabled professional services in research projects about the university. We will share our research methods and data - feeding into the aims of Open Science - but will do so in ways that are in line with the aspirations of disabled people.

Methodologically, we will build new understandings of innovative online methodologies - testbeds, online cafes, focus groups, appreciative inquiry - and our creative outputs will create collaborations between the social sciences, arts and humanities. 

Theoretically, we will bring critical disability studies theorisations to the academy: applications often ignored in broader intellectual work in the Equality, Diversity and Inclusion space. Too often this space is filled with policy, process and procedure: we want to reclaim it as an exciting place to rethink the very meaning of the university.

Interdisciplinarity wise, our project includes research participants who are academics and professional services from across the social sciences, arts and humanities, science, technology, engineering, medicine and maths: disciplines represented through membership of our Research Advisory Board.

In terms of public engagement, we will produce a number of exciting, original and impactful multimedia outputs including films, song tracks, recordings of online gaming workshops and illustrations.

Methodology

In the first three months of the project we will get ethical approval for our research and review the academic literature (which will help shape the kinds of questions we ask and methods we use in the first four phases of the project). We will then move into the main programme of work conducted between August 2026 - April 2029. 

In Phase 1 we will carry out semi-structured interviews with disabled/neurodivergent colleagues from across the British university sector. We want to learn about those times when disability has been made a problem and when disability has created opportunities in the workplace. We will transcribe interviews and tease out key recurring themes. 

Phase 2 brings together international key researchers, philosophers, theorists and research professionals - who have an interest in disability - to play and experiment with the notion of depathologisation. We call these online workshops tests. We will use online platforms such as Padlet, Trello and Zoom where we will workshop sessions in order to collectively think about the ways in which disability can revolutionise the university. We will collect some of the common stories that are gathered in these testbeds and share these on our project website: inspiring, we hope, others to share their stories.

Phase 3 will get us to think more critically about the methods we can use as researchers to generate new ideas about the university with disability/neurodivergence as driving subjects of conversation. Colleagues from the US, UK, Australia, Asia and Europe will come together to join online cafes. Participants will be invited to bring their own journal entries, photographs, video/written notes, drawings, paintings, creative writing and poetry. We will share some of this artistic work on an online exhibition housed on the project website. 

Phase 4 will promote conversations between academic researchers and professional services colleagues: groups that often do not have opportunities to talk with one another. We will ask a number of disabled and/or neurodivergent professional services and academics to commit to a working group that meets for five online focus groups to work through the five stages of defining, discovering, dreaming, designing and delivering the depathologising university. 

The final Phase 5 involves us sharing the key findings from Phases 1 - 4 and working with a disabled gamer, illustrator, musician and film-maker to use their chosen medium to best represent the key project messages. 

Ethical issues

We will obtain ethical approval through our university ethics panel. All participants will be provided with information sheets/consent forms; clearly outlining their involvement.

We will collect data including interview transcripts, narratives, stories, artistic artefacts, visual and textual depictions (from our online interviews, focus groups, testbeds, online cafes) and films, music, illustrations and gaming representations (from our public engagement activities). Our Data Management Plan will ensure personal information is stored in a secure university drive and any anonymised data will be shared to conform to our university’s data storage, security, sharing and preservation guidelines. We will write a distress protocol, a safeguarding document and carry out a full risk assessment.

We are committed to Open Research/Open Data: we want to share our data, our findings, our information sheets and consent forms with other researchers. However, we will work carefully with our disabled/neurodivergent collaborators to ensure that we give context to the data and research materials we share; emphasising the ways in which disabled/neurodivergent participants are shaping understandings of depathologising the university. 

Finally, in the spirit of collaboration, we will regularly check in with our Research Advisory Group to ensure that they are kept up to date on any ethical challenges and issues raised by our research. We adopt the disabled people’s movement mantra - ‘Nothing about us, without us’ - to ensure that our research is of relevance to the lives of disabled people who work in the university.