Structural ableism: How disabled people’s lived experiences can shape inclusive research practices in a post-COVID-19 academy

Stuart Read and Anne Parfitt

How can the post-pandemic academy be rebuilt in ways that are more inclusive for all? As academics in Education and Disability Studies, we argue that disabled people’s voices must be heard in such discussions. Disability is a unique characteristic in that all other minority groups are contained within it. Simply put, disability does not exist in a vacuum and is interconnected with other characteristics such as gender, race, sexuality, socio-economic status etc. Hence, understanding and mobilising the experiences of disabled people will in turn, advance equality and representation for all in the post-pandemic academy. 

To understand the experiences of disabled people in the contemporary academy, we focus on the concept of ‘ableism’, which refers to the societal value that is afforded to the existing privilege of being ‘able-bodied’, thereby denying the ‘disabled body’. The academy perpetuates ableism throughout its structures and systems. These academic processes create normative cultures and ways of working that become entrenched, taken for granted, and subsequently, above and beyond change. In this regard, Merchant et al. revealed how disabled staff experience ableism, leading to them feeling as though they are burdens rather than contributors to the academy. Disabled staff in their study spoke of difficulties in accessing and navigating university buildings and car parks, as well as reporting that they had to invest additional time and energy in trying to overcome rigid university practices that prevented them from working effectively and to their optimal capacity.

Already during the pandemic, we have seen that customary practices and processes in the academy, some of which were previously thought of as immutable, have morphed overnight to embrace ways of thinking and doing that were once the terrain of disabled colleagues. Going forward, the Coronavirus pandemic presents a unique opportunity to learn from the lived experiences of disabled people. To do this requires that disabled people are afforded the opportunity to engage in an academy that is inclusive for them. Challenging the ableism within research is where the change must start, for research activity, arguably, constitutes the rationale for the academy.

Inclusive research: what is it and what are the challenges?

Inclusive research is a broad umbrella term used to describe a research process that reframes the roles of disabled people from participant to researchers with valuable lived experiences. Other terms are commonly used to describe research practices that are designed promote inclusion, such as emancipatory or participatory research. Terminologies alone do not make research inclusive. If research is to be ‘inclusive’, a first challenge that is put to researchers, and the wider academy, is to reshape traditional ableist practices and structures, so that they work for disabled people. For instance, people with learning disabilities can experience barriers to participating in academic research due to a lack of understanding and flexibility within academic systems, such as in regards to assumptions of vulnerabilities in ethics applications, and lack of access to payment. In other words, the challenge for the academy is to work out how it can equip itself to respond flexibly and effectively to the needs of disabled people without endorsing existing ableist narratives of disabled people as ‘less human’ than other individuals.

Aside from academic systems, the academy invariably places researchers into positions of power and ableist privilege, reinforcing inequality through conventional research processes. Through this power, researchers can turn to investigating a particular disability topic with a “pre-determined agenda” that may work against the needs of disabled people involved, such as involving disabled people in a tokenistic way. Disabled people are wary of this ableist privilege afforded to researchers, or as Williams et al. described, “where academics have a role, there is often suspicion that projects … are initiated and steered by them.” The academy has to face up to the challenge of building and maintaining relationships with disabled people that are founded on principles of equality and value. Relations must be rooted in recognising their contributions to research: not only during its execution but also in honouring its true purpose. 

A third crucial requirement to enacting inclusive research is ensuring that disabled people’s voices are not excluded from discussions, but are instead very much seen as assets. They bring to the table fresh perspectives gained through their lived experience of intersectionality, and from their skills gained by working to navigate longstanding ableist barriers. Their knowledge can be deployed in conversations leading to positive change throughout the academy. For example, while the lockdown period has caused considerable challenges for disabled students, there has also been evidence of positive change through increased mainstream acceptance of virtual learning, and some disabled students reporting reduced stress and less fatigue. The pandemic has shown us that socio-technical systems that were hitherto marginalised as disability-related accommodations are now being embraced across the wider academy. Disabled people’s experiences must not be cast aside and dismissed as unimportant. To do so would mean that valuable insights and knowledge are wasted in a time of fundamental realignment for the higher education sector.

How can research become more inclusive in a post-pandemic academy?

Research, academic practices and socio-technical systems can be used in ways that are inclusive for all, but for this to happen, the pervasive ableism which prevents authentic participation of disabled people must be overturned. This requires the entire membership of the academy to be open and willing to critique and reform their own exclusionary and ableist mind sets as we embrace the post-pandemic world.

Photo by Robert Ruggiero on Unsplash

Stuart Read and Anne Parfitt are both Research Fellows in the School of Education, Bath Spa University.

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