Lived experience knowledge honoured in inclusive research

Dr Ellen Fraser-Barbour Policy and Research Leader - I bring an embodied approach to knowledge given my combination of lived, academic and professional experience. I am passionate about work to do with preventing and confronting discrimination and harm against people with disability.  Research can be a valuable social justice tool, offering ways for disabled people to be critical thinkers and heard and listened to.  

For the video recording of this presentation, please see the online symposia page.

[Slide: Acknowledgement]

I would like to begin by acknowledging the traditional custodians of the land on which I am on today, which is the lands of the Kaurna people in Adelaide – South Australia. 

I’d like to take a reflective approach in my talk today and leave you with a call to action for you to consider in your own quest to ‘do’ inclusive research well and meaningfully. 

[Slide: Lived experience as central to inclusive research]

Inclusive research methodologies are fundamentally about centering the lived experiences of people with disabilities, not just as participants but as key thinkers, analysts, and communicators in the research process. Lived experience-led research is essential to social justice movements because it disrupts the status quo by shifting the focus to those who have direct, personal insight. Inclusive research methodologies will often include words like co-research, co-design, or co-production.  

Inclusive research is fundamentally concerned with the idea that people with lived experience are not merely collaborators or contributors supporting the ideas that able bodied researchers and politicians have – but instead, have actual authority and leadership in the framing, questioning and analysis.

[Slide: Why Lived Experience Leadership Matters in Academia]

I am always questioning how we make sure inclusive research is led by people with lived experience.  How do we make sure that those most affected by injustice, are in control of the narratives, the framing, our understanding of words and how we communicate this to people who can effect change? 

People with lived experience have an understanding of social issues, grounded in the lived realities that go beyond what can be gleaned from books or allyship. For lived experience researchers - the personal is indeed political. 

Inclusive research is not a single method – but rather a heap of different methodologies. Often it means co-research, co-design, or co-production. But I struggle with the idea of ‘co’ doing research when it is abled bodied researchers setting the agenda and bringing lived experience in second.  Power inequities persist.   

For me, good knowledge requires that we are not just collaborators or contributors to non-disabled peoples ways of thinking about the issues that affect our community.  

[Slide: Academia: Oppression and Social Progress]

We must acknowledge that academia has roots in colonialism and has historically been a site of violence and oppression against marginalized communities. Much like how men historically produced research about women, disability research is still often conducted by those without lived experience. This has caused significant harm, and we must recognize this history as we navigate our work today.

Conversely, academia also has the potential to be a space for social justice, progression, and learning. There are extraordinary scholars who deeply consider how to move toward a future where marginalized communities can live free from oppression and harm. Connecting with such scholars has been crucial in sustaining my own academic journey, and it reinforces the idea that academia can indeed be a force for good.

[Slide: Whose Viewpoints Are Heard in Disability Research?]

As researchers, whether we have lived experience or not, we operate within a hierarchical system that often positions us as outsiders looking in—gathering, theorizing, and reporting on the experiences of others. But for those of us with lived experience, we are both the observer and the observed. We are often the people who are ‘mined’ for information and we often willingly provide – because we desperately want change and social progress.  But there is also the risk of feeling that our input feels tokenistic or dismissed   

While we can’t wave our magic wands and eradicate oppression or discrimination tomorrow – I think we can as researchers, can be mindful of power and privilege.  

[Slide: Tensions for lived experience researchers working in inclusive research spaces]

If we truly want to support lived experience leadership in inclusive research, we need to be aware of some of the tensions that exist for our colleagues who have lived experience:

1. Exploitation: There is a real risk that the work of lived experience researchers is used to advance the agendas of those who do not fully understand or appreciate the complexities of disability. This exploitation is often tied to power inequities within institutions.
2. Privileging Voices: Historically, research has pathologized human diversity, using deficit-based language that views differences as problems to be fixed. Although our understanding of ethical research has evolved, harmful stereotypes and stigmas persist, often in subtle ways. Lived experience researchers are on the front lines, constantly working to counteract these entrenched biases.
3. Emotional Labor: The demands of emotional labor are significant for lived experience researchers. We constantly navigate microaggressions, inaccessible environments, and the pressure to conform to ableist norms. This work is not just emotionally taxing; it can lead to burnout, as we are unable to disengage from the issues we study and advocate for.

Burnout in this context goes beyond fatigue—it’s the overwhelming sense of hopelessness that comes from constantly battling microaggressions and ableist structures. The personal is political for lived experience researchers, and this means we cannot simply step away from the issues we face.

[Slide: Solidarity, and allyship in inclusive research methods:]

Stella Young, a brilliant disability Australian advocate, once said, “Smiling at a flight of stairs never made them disappear.” This quote encapsulates the tension we face: the exhaustion of confronting ableism, but also the determination to keep building relationships and pushing for change. 

For me, inclusive research methods holds at it’s heart two core basic elements. First, our opportunities for relationships between colleagues and researchers with and without disability who who have a shared goal for confronting discrimination.  Second, our willingness to intentionally listen, value and amplify knowledge by those with lived experience of the issue we are researching. 

[Slide: Solidarity and what this means in inclusive research:] 

We all share the desire of wanting a better world for disabled people right – and it can be easy to feel disillusioned, discouraged and criticised for not doing enough. 

With this in mind – I’d like to  put forward some of my ideas for what  makes inclusive research meaningful.

• We can’t eradicate ableism - but we can ask questions:
  Reflect on our own privileges, our backgrounds, our values, where our ideas about productivity and success come from.  I think about my own background and the fact that I am white, middle class, I come from a well educated family – and I know that this has allowed me to complete my PhD.
  • We can all think about how easily we accessed this space today, how our voices are received, and how financial stability may shield us from some challenges. Recognizing privilege requires awkwardness and discomfort. 
     
• Nurture relationships with people who have lived experience:
  • It’s easy to focus on the task and outcomes in research.   At times that can limit time and space to build relationships with people in community who have lived experience.   If we only talk to people with lived experience for the purpose of data collection – we are doing a great disservice.
  • People with lived experience must be involved in grant writing, the thoughtful analysis of research (this is often where we frame our words and language and understanding on an issue too). We need long-term projects that allow for meaningful contributions from researchers with intellectual disabilities, for example, to challenge the notion that they cannot engage in higher-order thinking.
     
• Solidarity and support for disabled researchers:
  • Lived experience researchers draw strength and wisdom from their communities. These connections are crucial for articulating visions of social justice and for sustaining the emotional labor required in our work.
  • There will also be times though – when it is necessary to withdraw. Where rest is not a luxury—it’s a necessity for survival. We must support scholars to take their time, slow down, and acknowledge that our current productivity culture is inherently ableist.
  • Amplify Thought work by disabled people: Seek out and engage with creative works from the disability community. It’s our responsibility to be informed and to amplify these voices.

In closing, it’s up to all of us—able-bodied and embodied researchers alike—to challenge ableist norms in academia. By doing so, we can create a more inclusive, just, and vibrant research community.
 

References

Cambibatch, A Rest and resistance: sleeping as a revolutionary act | The Justice 

Hersey, T. (2022). Rest is Resistance: A Manifesto. Hachette UK. 

Hochschild, A. R. (2012). The managed heart : Commercialization of human feeling. University of California Press.

Kafai, S. (2021). Crip kinship: The disability justice and art activism of Sins Invalid. arsenal pulp press. 

Piepzna-Samarasinha, L L (2021)  "Still Dreaming Wild Disability Justice Dreams at the End of the World," Disability Visibility: First-Person Stories from the 21^st Century (Ed. Wong, A)  

Price, M. (2011). Mad at school: Rhetorics of mental disability and academic life. University of Michigan Press.