When is ‘Nothing About Us Without Us’ going to reach academia?

“Nothing about us, without us” is a core principle of the disability rights movement. It is a phrase you will often read in the work of disability scholars, yet the reality is still a work in progress. 

Disability studies in Aotearoa is a small field, with few programmes spread across the country, mostly led by a single staff member in each institution. If that single person is non-disabled, can we truly say we are living up to the mantra “nothing about us, without us”?

This question arose for the authors of this article after we saw a local posting for a disability studies lecturer position. As two academics with PhDs in disability studies topics – the first author disabled, the second author non-disabled - we started thinking about how many non-disabled people lead disability studies programmes, the roles of disabled and non-disabled people in that context, and how to bring about greater balance.

The impact of who leads

Who holds academic leadership matters. Lecturers and professors shape what knowledge is legitimised, whose voices are heard, what questions are asked, and how research is conducted. When non-disabled people dominate disability studies, it can reinforce the very power structures the field seeks to dismantle.

This is particularly important in a field where, historically, disabled people have been denied control over how disability was defined, studied and taught. This shaped the field in ways that were – and sometimes still are – actively harmful to disabled people’s rights and lived realities. Disability studies exists, in part, to challenge these power imbalances.

The leadership issue also affects students. We asked for people’s perspectives in a few online spaces, and some disabled students told us they wouldn't enrol in disability studies programs run exclusively by non-disabled academics. This can be about feeling safe to explore disability-related concepts with someone who understands lived experience.

While we have both experienced working with non-disabled lecturers who did an amazing job creating inclusive spaces, we have also experienced those who did not do this. Many disabled people have experiences of being silenced and invalidated by non-disabled “experts” who make decisions about our/their lives. Given the barriers disabled people already face in higher education, the underrepresentation of disabled lecturers shouldn’t be yet another hurdle.

Ableism in academic roles

A major barrier to increasing disabled leadership in disability studies is the academic job market itself. Most university postings are full-time, which excludes many disabled people. The highly competitive nature of academia further reinforces inaccessibility. And then there’s the issue of disclosure—many disabled academics don’t feel safe being open about their identities due to workplace discrimination, entrenched ableism, and the precarious nature of academic employment.

Yet visibility matters. Imagine a world where students didn’t have to read between the lines to figure out whether their disability studies lecturer has lived experience. Where disclosure wasn’t a risk, but an asset. Where allies—non-disabled academics working in the field—were clear about their own positioning instead of leaving students to guess.

The role of non-disabled academics

There is, of course, a valid place for non-disabled scholars in disability studies. Ingrid is non-disabled and has had many disabled people tell her she’s helped them better understand and validate their experiences. Non-disabled researchers can contribute valuable knowledge on disabled/non-disabled dynamics from non-disabled perspectives.

As a comparable anecdote, Nicolina is a Pākehā who did her Master’s in Māori and Pacific Development on the topic of Pākehā working towards implementing Te Tiriti o Waitangi in Pākehā-led not-for-profit organisations. She describes that research as ‘Pākehā studies’ and believes ‘non-disability studies’ could be another useful area of study.

Ingrid knows firsthand that without disabled colleagues, she wouldn’t be as effective in her work. There are things she simply wouldn’t think to ask or notice. Recently, while considering booking a new office space for her team, she thought the area was highly accessible—until her boss, who is a wheelchair user, pointed out that the camber of the road and footpath made it extremely difficult to navigate. Even the most well-intentioned allies have gaps in awareness. That's why disabled leadership isn't just ideal - it's essential. 

Beyond representation: Good allyship in disability studies

All disability studies lecturers should be good allies, whether they are disabled people supporting colleagues from other impairment groups or non-disabled people working in partnership with disabled scholars.

This means recognising power imbalances, centring disabled voices, ensuring disabled people are leading research on disability, and integrating course materials authored by disabled scholars with diverse intersectional perspectives. It also means understanding that some groups—such as Deaf people and people with learning disabilities—face even greater barriers to academic leadership, and working to remove those barriers.

A call for change

One way to improve disabled representation in academic leadership is through job-sharing. When we saw the posting for a disability studies lead, we asked about applying together. For Nicolina, a job share would make the role more accessible. For Ingrid, it would make the role more ethical. Structuring academic jobs differently—through flexible contracts, co-leadership, and job-sharing—could open doors for more disabled scholars to take on leadership positions. We argue that institutions such as universities must take active steps to address power imbalances and foster true partnership through their hiring practices. 

In other fields such as Māori, Pasifika, and queer studies, academic leadership by those with lived experience is expected. So why is disability studies different? Of course, lived-experience alone is not sufficient for a role such as a lecturer – candidates must have the skills and experience required for the role. However, when lived experience is paired with the necessary skills, disabled disability scholars bring knowledge and perspectives that improve teaching, research, and student experience. If universities genuinely want to create a more inclusive environment, promoting reasonable accommodations for disabled academics in disability studies should be a priority.

We look forward to a future where universities are more accessible workplaces, where lived experience is valued alongside academic expertise, and where disability studies truly reflect the principle of “nothing about us, without us.”

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