Who cares in the University? Re-imagining research cultures through research with and by disabled and chronically ill academics

‘Who Cares’? Everyone.

‘Who Cares’! No one.

‘Who cares in the University? Re-imagining Research Cultures through research with and by disabled and chronically ill academics’ is a Wellcome Trust-funded Inframe Culture Catalyst award that brings together an interdisciplinary team across the University of Edinburgh, from SPS, HiSS and ECA. Most of us have experiences of disability and chronic illness as well as caring responsibilities. The motivation behind ‘Who Cares?’ was to understand how disabled and chronically ill academics conduct and experience research in environments that have been described as ‘unkind and aggressive’, with over half of academics surveyed by a study conducted on behalf of the Wellcome Trust suggesting that they had needed to seek professional help for depression and anxiety (Wellcome Trust 2020).

Whilst the number of students declaring a disability is reported to be increasing, the number of academic staff with a disability in Scottish higher education decreased between 2021/2022 (2175) to 2022/23 (1190) (HESA, 2025). This decline can be attributed to various factors. In part, it may be due to disabled and chronically ill academics leaving academia, either by choice or because they are no longer able to remain. These numbers may also reflect non-disclosure due to concerns, especially among early career academics, that revealing a disability or illness in competitive research cultures may result in loss of employment (Brown and Leigh, 2018).  

From a ‘social model of disability’ perspective, ‘disablism’ is akin to racism and sexism, with different sources of discrimination and oppression operating through and reinforced by the surrounding environment and social structures, as well as individual attitudes. Taking this as our starting point, we seek to explore how university research cultures can produce disability through requiring staff to adhere to ideals of an academic who cognitively over-performs, who can work long hours and produce a high number of outputs (Sang, Calvard & Remnant, 2022). This recognises that research cultures are shaped by higher education systems (precarious contracts, labour-intensive funding processes, quantified performance metrics) but also, we want to explore how academics create alternative spaces and cultures that are mutually supportive and care-full (Brannelly & Barnes, 2022). At the same time, it is important to consider the potential burden this kind of ‘care’ work can place on individuals.

Since Carol Gilligan’s articulation of an ‘ethic of care’ (Gilligan, 1982), numerous feminist scholars have explored different aspects of care. In their expansive and often quoted definition, Tronto and Fisher (1990) frame care as ‘everything that we do to maintain, continue and repair our world’ (p. 40). One element of this interrogation of care is exploring whether it is possible to develop a ‘web of care’ approach to our interdisciplinary research team’s dynamics, which means caring for each other as a collective responsibility, rather than as an ‘individual chore’ (Piepzna-Samarasinha, 2019: x). Thus, by ‘taking care’ we also turn ourselves into research participants asking what ‘taking care means to, and in, the team.’

Identifying ableist and disablist discourses and practices obviously benefits marginalised groups, whose vulnerabilities are amplified through the various ways that discrimination intersects with gender, sexuality, class, age and race. At the same time, informed by work on universal design, one of the founding principles of the project is a belief that the lived experiences and expertise of disabled and chronically ill academics can be used to improve research cultures for everyone working in higher education institutions. 

‘Who Cares?’ has three work packages:

WP 1, led by Claire Graf  analyses University of Edinburgh policies, procedures and processes (e.g., reasonable adjustment, grievance, absence, redundancy and maternity leave policies) that affect disabled and chronically ill academics, who often bear the ‘labour of inclusion’ that is in part, a response to the ‘implementation gap’ that exists between policy and practice. 

WP 2, led by Paula Jacobs  is based on interviews conducted with academics who self-identify as disabled, chronically ill or neurodivergent. Here, we seek to understand the enablers and challenges they experience in their research, experiences of support and ‘care’. We are inspired by the five key elements of an 'ethics of care research manifesto': we ‘take care’ (both as an action and application) that emphasise strategies such as transparency, reflection, and inclusive practices, ensuring that the research process and outcomes align with principles of equity. 

WP 3, led by Gill Haddow, but with contributions from all of the team, explores the substantive issues around ‘taking care’ and ‘slow scholarship’. The latter is a form of resistance to the need for speed in academic work, which argues for a more intentional, considered, conscientious approach to academic work (Berg and Seeber 2016: x). The benefits are numerous. It allows individuals to be more care-full (Brannelly & Barnes, 2022), as they no longer feel pressured to produce more and can therefore focus on less. We seek to reclaim time, through experimenting, when possible, with ‘deliberation over acceleration’ (Berg and Seeber 2016: x) with working ‘slow and fast’ and seeking opportunities to slow down (at different speeds and times, that include small behavior changes to radical overhauls of funding systems). 

Yet, our experiments with slow scholarship will offer insights about how realistic it is. For example, those who have precarious contracts or are at an early stage in their career may be most at risk of ‘the need for speed’. We recognize that working within a neoliberal academe requires us to be clear about the things we can and we cannot do, recognizing our own positions and power within the institute, and making visible when we become complicit.

How will care and slow scholarship sit together now and in the future? In an era of austerity, taking back time to work with care will be challenging, and experimenting with slow scholarship, in a culture that focusses upon the fast production of knowledge to index success, is at odds with the current climate. This, we argue, makes it more important as an endeavor, not less.

Author biogs:

Claire Graf is a linguist with many years experience of Trade Union activism, is current co-chair of the UoE staff disability network as well as leading workshops in inclusivity and diversity.

Gill Haddow is a sociologist of medicine and technology with expertise in the social and ethical consequences of biomedical science and technoscientific innovations. 

Paula Jacobs has come to Disability Studies theory and an Ethics of Care through previous work with people with Intellectual Disability and people living with dementia.

Fadhila Mazanderani is a medical sociologist and STS scholar with expertise in chronic illness, digital technologies and care practices.

Ileana L. Selejan is an art historian and visual anthropologist and is deeply interested in decolonial and intersectional approaches to disability studies. 

Bibliography:

Brannelly, T., & Barnes, M. (2022). Researching with care: Applying feminist care ethics to research practice. Policy Press.

Brown, N., & Leigh, J. (2020) Ableism in academia: where are the disabled and ill academics? Disability and Society 33(6) 958-989.

Gilligan, C. (1982). In a Different Voice: Psychological Theory and Women’s Development. Harvard University Press.

HESA (2025). Higher Education Staff Statistics (accessed November 2025)  https://www.hesa.ac.uk/news/16-01-2024/sb267-higher-education-staff-statistics

Piepzna-Samarasinha, Leah Lakhmi (2019) Care Work Dreaming Disability Justice, Arsenal Pulp Press.

Sang, Katherine and Calvard, Thomas and Remnant, Jennifer (2021) Disability and academic careers: using the social relational model to reveal the role of human resources management practices in creating disability, Work, Employment and Society, 36(4) 722-740  https://doi-org.eux.idm.oclc.org/10.1177/0950017021993737 

Tronto, J. ., & Fisher C, B. (1990) Toward a Feminist Theory of Caring. In E. Abel. & M. Nelson (Eds) Circles of Care (pp. 36-54) SUNY Press. 

Wellcome Trust (2020) What researchers think about the culture they work in accessed November 2025 https://wellcome.org/insights/reports/what-researchers-think-about-research-culture