Building Anti-Ableist Research Cultures (Disability History Month 2025)

This UK Disability History Month, we wanted to foreground some of our excellent colleagues from the Wellcome Anti-Ableist Research Cultures (WAARC) project in the University of Sheffield who not only have lived experiences of disability, but are actively working within the research culture space to transform how disability is recognised within the sector. Dr Emily Ennis, Research Culture Manager at Leeds, spoke to Dr Armineh Soorenian and Liz Dew to bring you their stories.

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[Emily]

Hi both. Before we get started, I thought I’d give a bit of detail on my own experiences of disability in HE before moving on to your backgrounds too.

I’ve lived with chronic illness and mental health challenges since my teens. University initially felt exciting and a welcome distraction, but during my PhD, managing disability became overwhelming. I became much sicker, had no funded sick leave, and conferences felt inaccessible to me. By my postdoc, I was exhausted and developed a serious mental illness requiring weekly treatment. Around then, I learned I was autistic: a relief, but also confirmation that much of what came with academia (the conferences, travel, willingness to work through pain and fatigue) wouldn’t match my needs. I now live with more chronic illness than ever before (!!!), but working in professional services offers better balance. As a plus, working in research culture has also given me purpose and drive to make sure what happened to me doesn’t happen again to other talented and capable researchers. I come to this with a social justice model of change. But that doesn’t mean that the overall culture of HE doesn’t still impact me…

I was wondering if you could each give me a bit of background on your own experience of disability in higher education and provide some examples of the systemic challenges/issues that make being disabled in HE difficult?

[Armineh]

I completed an MA and a PhD at the Centre for Disability Studies at the University of Leeds, having been through home schooling, special college and a less accessible university environment for my undergraduate degree. It was in Leeds that I was introduced to the social model of disability, I finally found my community and came to the realisation that I was Disabled by society and not because of my multiple impairments.

However, I still faced barriers, including waiting for weeks for the written text to be converted to accessible formats so that my screen-reader was able to read it out, this meant precious time was taken away from my PhD studies. As an International student, I experienced delays due to many access barriers. I was not in receipt of Disabled Students’ Allowance because of my International status. I therefore had only a few hours of Personal Assistant support for a heavy PhD programme. My nationality status meant that I had to spend a huge amount of time writing to countless numbers of charities and educational organisations to raise funds for a high International tuition fee and my disability access expenses. All this left me exhausted and burnt out, worried if another extension on my student visa would be approved. I felt the implications of multiple injustices and the consequences most keenly.

Due to ableist recruitment processes in academia, I could not secure a post in the HE sector (Soorenian, 2019).[1] Experiences of fatigue and mental health issues, brought on by ableist practices, affected my self-confidence for many years post PhD. With opportunity in HE being denied to me, either for potentially ableist reasons or otherwise, I had no choice but to look elsewhere. For the following few years I worked in the third and public sector doing disability research. Although I gained invaluable experiences working outside academia, my heart was always in academia.

I was therefore delighted when the postdoc position was advertised for the WAARC project. Here I found myself in a supportive team, although there were still structural barriers, for example, long delays in receiving Access to Work continued to exist, however the team has been committed to make the work practices accessible and inclusive. Working in WAARC team, I realise that like elsewhere, in academia creating a community of care needs to be an intentional effort. With a fierce inter-dependency, recognising ableism requires using minor adjustments and thinking outside the box. The process of removing barriers has to be a generative, collaborative and sensitively managed practice. We innovated around accessibility and used disability as a tool for reimagining ableist systems, and as opportunities to reflect on alternative research cultures.

With my current contract coming to an end in Spring 2026, in an environment where job insecurity and precarious contracts are rife, I do worry if I will be successful in securing another post, if the next team I work in will be as accommodating and understanding as my current team, and if I will need to navigate new structural barriers. As a Disabled academic, I only hope continuing my dream of staying in academia is not going to become untenable.

[Liz]

I’ve only been aware of my disability for about six years and it has taken time to think of myself as disabled. I still sometimes worry about the validity of that label. However, I experience barriers to participation in work, study, and other areas of my life so I am choosing to claim it. I have found great joy and solidarity in connecting and working with other disabled people. I am also very aware of the privilege that comes with not having a visible disability; of being able to ‘pass’ as non-disabled in everyday life and to choose whether to disclose.

Like many late-identified neurodivergent people it was through my children being identified that I came to understand myself. Due to my own internalised ableism it took time to recognise myself as autistic, and to seek formal diagnosis (another privilege afforded by my geography, my whiteness, my ability to self-advocate). By this point I was also experiencing an energy-limiting condition, and I often wonder about the link between my physical health and many years of ignoring my support needs and sensory differences; trying to fit into what others seemed to manage, and feeling intense shame for finding these supposedly ‘normal’ things so difficult.

When I reflect on my experience of disability in higher education, much of it is in hindsight. After struggling to find my place in the world of work, I eventually ended up doing temp work in higher education. I found that compared to other jobs that seemed to squash me, aspects of the HE environment really worked for me. I enjoyed working alongside academics who were passionate about their subject areas, brilliant professional services colleagues, and I loved supporting students. In my career in HE it has been the thoughtful, quirky, justice-oriented colleagues who think in non-normative ways that have made work fun and meaningful to me.

It is an ongoing challenge to notice and name the systemic issues that make being disabled in HE difficult. I have done a lot of pushing through and had to take regular annual leave to recover. I thought there was something ‘wrong’ with me that I seemed to find it so hard compared to my peers and colleagues. I have spent the past 18 months working in a team where our project is to name ableism and ableist practices and it has been transformative. My struggles are shared by others, and they are not personal, they are systemic! I knew this in theory, but I get to really feel this in my current role. I know most disabled people don’t get to experience this kind of solidarity in the workplace and I fear I will no longer be able to work in other kinds of environments when this role ends. The labour of explaining, evidencing, and pushing back against ableism is exhausting, and doing that without colleagues that ‘get it’ and have lived experience feels unsustainable.

The most overwhelming thing is the extra time and emotional labour that comes with being disabled. When you’re disabled in HE, you’re navigating not only inaccessible buildings, technologies, and processes, but also the emotional weight of knowing that the institution was built around someone else’s body, brain, energy, and life pattern. The expectation is that we bend, contort, and compensate and that we do so silently, seamlessly, and without making a fuss.

What I keep coming back to is that being disabled in higher education is not just about the barriers themselves, but about the constant negotiation of whether to keep pushing, keep explaining, keep absorbing the impact. We can’t keep treating disability in HE as a matter of individual adjustment or personal resilience. I don’t have answers, and I’m still learning what it means to take my own needs seriously. But I know now that the problem isn’t me. It never was. Knowing that doesn’t remove the barriers, but it does help me stand in my own experience with more clarity and a little less shame.

[Emily]

What’s interesting to me is how all three of us have shared just how wonderful it is to work in HE, while also recognising that like many other organisations and structures, disabled people don’t naturally “fit” and often have to perform unfair and unjust amounts of additional emotional labour.

I think all of our accounts also reflect on how easy it is to disappear. In your response, Liz, I was really struck by that inability sometimes to know what we actually need, but to still face barriers on a daily basis. That feeling, too, of needing to fit in or “pass”. Armineh, too, you have reflected on that need to push very hard to fit into the model of “student” or academic, when both your international and disability statuses were actively working against you. That idea of “normativity”, of a pre-existing system that wasn’t built for us – to reflect on what you were saying, Liz – is still clearly fundamentally broken.

As a Research Culture team at Leeds, we’ve run some positive action initiatives to support disabled researchers but have found that empowerment isn’t always possible in a disempowering system like HE. That’s why it’s important to think of systemic change. I’d like us to end perhaps on something more forward-looking and hopeful. I was wondering if you could also say something about what you think are some changes – both short- and long-term – Higher Education could make to make it more disability friendly?

[Both Armineh & Liz]

This is a HUGE question, and we are mindful that many, many disabled people before us will have shouted into the void about this. How can we really influence and make change? Here are some thoughts:

A radically accessible university must treat disability as generative, not peripheral. Disabled people need to be centred in governance because our experiences reveal how the institution actually works – what it values, where it fails, and what could be reimagined. Disabled staff networks already hold this insight but are too often sidelined from decision-making, limiting the university’s capacity to learn from them. Universities must build genuinely collaborative ways of working that acknowledge disabled people’s expertise without placing the burden of change on us.

Universities must welcome and encourage Disabled staff to disclose their impairments/disabilities and be open about their access needs. Disabled staff must be trusted as experts and knowers of their lived experience without being interrogated or questioned about what they may need and why. When disabled people raise problems, these should be understood as opportunities for redesign rather than complaints to manage. Without safety to disclose and speak openly, universities lose the very knowledge needed to transform.

Flexible arrangements and reasonable adjustments should be readily offered without a need for justification and the emotional labour of explaining and disclosing repeatedly. As a university community we need to respond collectively and intentionally to each other’s access needs, making structural changes to accommodate different needs. Support needs to be seen as a relational, reciprocal, mutual, and an ongoing process benefiting both the provider and the receiver.

[Emily]

Thank you both for your honest contributions. It’s very clear from your responses that disabled people in HE navigate not only inaccessible buildings, technologies, and processes, but also the emotional weight of knowing the institution was built around someone else’s life pattern. We can’t keep treating disability as a matter of personal resilience. The problem isn’t us and it never was. Knowing that doesn’t remove the barriers, but I think it can help us build communities and work collectively to call for radical change.

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Liz Dew is a Project Coordinator for the Wellcome Anti-Ableist Research Cultures project, and as such finds meaning in work rooted in social justice. She's driven by a desire to question conventional wisdom and dismantle normative assumptions that shape our workplaces and the wider world. Liz's varied career in Higher Education began in widening participation at the University of Salford, leading to involvement in diverse outreach and social justice initiatives across the sector,  as well as time in central services and student support. Before joining the University of Sheffield, Liz was project manager at the Refugee Rights Hub — a project dedicated to reuniting refugees with their family members.

Dr Armineh Soorenian is a Research Associate with iHuman and the School of Education at the University of Sheffield. She is working on the Environment strand of Wellcome Anti-ableist Research Culture project funded by the Wellcome Trust, which will be using Recruitment Case Studies of previous, current and future research posts as well as qualitative research methods to review and promote equitable and inclusive forms of employment for disabled researchers. Her research focus has been in the fields of Disability Studies and Education, starting with her PhD at University of Leeds, Centre for Disability Studies, which investigated the inclusivity of British universities for disabled international students and the accessibility of internationalisation of higher education. Armineh has since worked in examining Accessibility Plans in secondary schools and their effectiveness in developing inclusive education settings for disabled children and young people, while working in a Disabled People’s Organisation, and developed research interests in disability policy when working in Disability Unit, Equality Hub, Cabinet Office. She commissioned and managed specific policy projects based on disabled people’s lived experiences in the UK in such areas as Employment, Social Care and Support, and Public Perceptions and Attitudes towards disabled people. Working across departments and arms-length bodies in the government, Armineh has been involved in research projects on disabled people’s experiences of Cost of Living, gathering qualitative and quantitative evidence to inform and influence policy. Her other research interests and writings include disabled academics, disabled women, intersectionality, disability arts and representations, disability hate crime, and inclusive research methods. She has also research interests in the implementation of UNCRPD in domestic context.

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[1] Soorenian, A. (2019). At the margins of academia – on the outside, looking in: refusing, challenging and dismantling the material and ideological bases of academia’. In Berghs, M., Chataika, T. and El-Lahib, Y. (eds.). The Routledge Handbook of Disability Activism. Routledge. https://doi.org/10.4324/9781351165082