Wellcome Anti-Ableist Research Cultures (WAARC) and the expertise of lived experience disabled researchers

Quinn Clark is an author and poet based in Newcastle, and the Research Assistant within the Research Team at the Pathfinders Neuromuscular Alliance. Their work often focuses on disability, neurodivergence and trauma, and they have been published with Summersdale Publishing ('365 Days of Healing') and Unbound ('No One Talks About This Stuff'). Quinn works with a number of disabled-led charities such as CRIPtic Arts, and provides access support to disabled/neurodivergent artists seeking arts funding.

When you work at a charity run by and for disabled people, the promises of accessible and inclusive working environments from other institutions are constant. However, more often than not those promises fall flat. Time and again people report back with poor understanding of access requirements and what it really means to accommodate disabled audiences, participants, and employees.

That isn’t to say these other organisations are unaware of this gap. In fact, the staff at Pathfinders Neuromuscular Alliance—the neuromuscular charity I work for—are often asked to provide their expertise across a variety of events and projects, educating everyone from journalists to medical professionals. There is a growing understanding that a lived experience perspective of disability is crucial to conducting good research. However, often disabled individuals are expected to provide that knowledge without compensation: as unpaid, volunteer consultants. This is one of the many ways that ableism (discrimination against disabled people) creeps into the ways those with disabilities are treated in academic and research environments.

This understanding is what led to the development of the Wellcome Anti-Ableist Research Culture project, also known as WAARC. Spearheaded by the University of Sheffield and funded by the Wellcome Trust, WAARC looks to address how disabled researchers are discriminated against in the workplace, and create meaningful guidelines to help prevent this treatment. Pathfinders were invited to be part of this project due to our experience in providing advice, support, advocacy, and other crucial information to individuals with muscle-weakening conditions. Our specific involvement involved addressing materials about the under-recruitment of disabled researchers and research support staff.

I joined the project in late 2025 following a big shift at Pathfinders, following the departure of our former CEO and a shake-up to many of our teams, including my joining the Research Team as a Research Assistant. My colleague and head of the Research Team, Dr Suzanne Glover, had been working closely with the University of Sheffield’s Dr Armineh Soorenian (WAARC Research Associate) and Dr Kirsty Liddiard (Co-Director of the Wellcome Discovery Research Hub) for some time before said shake-up. It is difficult to capture the full scope of a project after entering at such a late stage, but it was clear that a tremendous amount of thought and care had been put into the research. 

Dr Soorenian collected a staggering amount of information from interviews conducted with employees and researchers at the University of Sheffield. These interviews asked subjects their thoughts on an array of disability, employment and research-related subjects, including accessible working environments, disclosure, and recruitment packs, throughout their careers. The breadth of responses was enormous, and a clear pattern emerged regardless of disability and even prior work experience. Responders were unhappy with access, provisions, and understanding of disability in research environments. Commitment to Equality, Diversity and Inclusion was meaningless when access is not developed in consultation with the disabled people it is designed to support. 

It is ironic that the prejudices which keep us out of work are also the ones which prevent us from helping develop the tools we need to thrive in the workplace. Throughout the interview responses ran an undercurrent of understandable frustration, brought on by years of misunderstanding, mistreatment, and constant exposure to ableism. No matter one’s condition, diagnosis, label or symptoms, the invisibility, infantilisation and exclusion which comes with being disabled in the workplace was reported back across all subjects. Many responses described a type of ‘mental load’ not often considered by non-disabled researchers and employees: weighing up the pros and cons of disclosing one’s disability, and anticipating discrimination which could affect their career prospects and livelihood. 

At Pathfinders, we were not surprised by these results. We are a disabled-led organisation, meaning that the majority of our staff are people with lived experience of being disabled, and our Advocacy service often advises individuals with muscle-weakening conditions on employment-related issues. While we are not unique, disabled-led charities are far less common. I do not have a muscle-weakening condition myself, BUT I am disabled, and the difference in work environment and support at a disabled-led charity is like night and day compared to my previous working experiences. I wrote an article about The Revolution of Disabled-Led Flexibility in the Workplace when I first joined WAARC, and the sentiments expressed therein take on a new dimension in the context of the WAARC research. Time and again, we see that disabled people in the workplace benefit from the input of other disabled people.

Pathfinders operates from the perspective that disabled individuals should be treated as experts on their own conditions due to their lived experience. This idea is the spirit of WAARC: that disabled researchers are presently done a disservice in employment. The valuable insights expressed in the interview data resoundingly support this conclusion. While the WAARC team is exploring potential outputs for this information, the plan is to disseminate the data in a way which makes meaningful changes to work environments for disabled researchers. 

We are confident that if these guidelines are implemented, the persistent alienation and mistreatment of disabled researchers will be lessened.