How can universities support the needs of neurodivergent students, and how are neurodivergent students acting as changemakers and creating more accessible educational environments? In this article I summarise the research paper: Neurodiversity and the Accessible University: Exploring Organizational Barriers, Access Labor and Opportunities for Change that I wrote with co-authors Andrew Begel (Carnegie Mellon University) and Pernille Bjørn (University of Copenhagen).
The work of creating accessible environments has historically been done by people with disabilities and their allies. Our new research explores the experience of neurodivergent students in three Danish universities, and how they actively create new ways to make change in an environment still rife with barriers to access. We have specifically focused on the experience of students with autism, dyslexia, ADHD, cyclothymia, and neurological conditions that developed as a result of illness, trauma or injury (like fibromyalgia, complex PTSD (CPTSD) or post-concussion syndrome).
The study foregrounds the invisible access labor of students: the practices of negotiating and seeking equitable access to organizational services, technologies and resources. We found that the current Danish system frames accessibility mostly as an individualized issue: neurodivergent students who might need support are expected to seek accommodations within a fragmented ecosystem spread across many units in and outside the university — while institutions are generally not equipped to anticipate and address their needs. We found that teaching staff lacks literacy on neurodiversity and disability; data on disability is largely siloed within disability units — often due to local protocols around GDPR — while universities do not prioritize accessibility in their current strategies.
We mapped the structural and attitudinal barriers encountered by students across three main categories: assistive technology, cognitive and physical access and social access. The availability of disability support is not equal. All these barriers are intensified by intersecting social dimensions such as gender, nationality/immigrant status, co-occurrence with mental health conditions and multiple diagnoses. For instance, gender, socio-economic status and ethnicity often translate into different diagnostic patterns, differential access to mental health care, and differences in existing networks of care and support. We also found that care networks and the invisible labor of other access partners (like family members) are not taken into account in the design of socio-technical systems of support.
All this means that neurodivergent students encounter systems and organizational practices that require considerable access labor on their behalf, negatively shaping the efforts of articulation work. Access labor is always cooperative — and a multiplicity of bodies with a spectrum of needs exist in every cooperative engagement. However, CSCW research has traditionally assumed a normative embodiment when designing and conceptualizing cooperative engagements, downplaying how social norms and power dynamics — combined with disability — shape how socio-technical systems are designed and enacted. This paper pushes towards a broadening of core CSCW conceptual work by proposing access labor as an extension and nuancing of articulation work.
What can universities do to center the needs and skills of neurodivergent students, creating neuroinclusive environments? To find the answer to this question we looked at the everyday micro-interventions created by neurodivergent students and their allies — the many ways in which they create collective access — for instance creating community, educating staff, counteracting stereotypes with practical activist work and caring for each other. The illustration below sums up the types of micro-interventions we documented: spoon theory in practice, remixing technology, scaffolding and workflow hacking, accessibility in the classroom, carving new connections, creating neurodiversity awareness, supporting belonging and trust in peer mentorship.
Illustration by Valeria Borsotti
We distilled some of the principles and values infused in these micro-interventions and propose access grafting as a strategy to artfully integrate and support bottom-up, activist and transformative approaches by neurodivergent students and their allies. This strategic approach builds on the following principles: collaboration, intersectionality, situatedness, multiplicity and cripping the classroom.
For instance, redesigning systems around collaboration means shifting towards practices that emphasize sharing datasets and knowledge, rather than upholding siloed structures. This also means designing disability support systems that consider how key access partners like parents can interact with services and interfaces, supporting the work of existing care networks. By centering intersectionality, we can design socio-technical systems that take into account the extra burden of access labor shouldered by neurodivergent students with marginalized identities, students with multiple disabilities, and students from less privileged backgrounds. We hope that this research will inspire new interventions and strategic work for neuroinclusivity in higher-education.