Chantal Spencer is a first year PhD student in the School of Architecture, Technology and Engineering at the University of Brighton. She identifies as a disabled feminist academic, working in the subject areas of design justice, disability justice and mobilities. Chantal considers herself to be a maker, designer, artist and disability rights activist. Below is her reflection on her PhD project that explores legacies of oppression that exist within traditional participatory design and research methodologies (The header artwork is by Abi Chapman- Accessify).

My PhD research focuses on the legacies of oppression embedded within participatory practices and their role in perpetuating the subjugation and discrimination of marginalised communities. Grounded in disability justice and design justice principles, I aim to build on the idea that “we would not think of disability as separate from class, age, race, queerness, family, children, violence, but we would understand it as intimately connected” (Mingus 2010). Therefore, although my research explicitly examines the lived experiences of disabled people, it is also inherently connected to the struggles of other marginalised groups and those who experience intersecting forms of oppression. This study explores how these oppressions manifest as (im)mobilities in people’s lives, aligning with principles of mobility justice.

Figure 2 artwork by author

The goal of my research is to develop new methodological approaches to participatory practice, aim to erode the oppressive constraints of what feminist scholar Patricia Hill Collins calls the “matrix of domination” (Collins 1990) that exists within our neoliberal capitalist society. Instead, I focus on actively dismantling these entrenched power structures.

Figure 3 artwork by author

I’m currently at the beginning of my PhD journey, having completed my first year of part-time study. Throughout this time, two key events have significantly shaped the direction of my research. I wanted to focus on these experiences in this blog post, as they offer a great way to demonstrate how research not only evolves but also informs and redefines itself along the way.

Live experience of disability as a participatory practitioner roundtable:

Following feminist standpoint methodologies, I felt it was crucial to embed the perspectives of individuals with lived experience in participatory practice into the foundation of my study. This led me to organise a roundtable workshop with a group of disabled participatory practitioners, where we discussed various aspects of their work and shared personal experiences.

The roundtable was rich and insightful, but it also challenged some of my core assumptions and a key premise of my study. One concept I had developed the study around was the idea of the “minimising burden of change on the shoulders of the oppressed”(Spencer 2022) .This manifested as a decision to ensure that participants in my research would not be required to recount their personal stories, as disabled individuals are often asked to share their experiences to access healthcare, benefits, or support. This storytelling is laborious, and I didn’t want to design a methodology that relied on it. If it did, I aimed to focus on the positive aspects of being disabled.

However, during the roundtable, participants expressed how being able to speak openly about these issues in a safe space with other disabled people felt nurturing and far from extractive. They emphasised that it was, in fact, labour to always focus on the positive aspects of disability, and they valued the opportunity to speak freely and honestly. This has had a profound impact on how I will approach my next research event. While the labour of sharing stories still exists, I now recognise it is only part of the issue, and I can mitigate this by giving participants the freedom to explore positive, negative, and neutral experiences.

My next step is to conduct a collaborative autoethnographic study, where my collaborators and I will collectively explore and document ideas around what I call “the labour of participation” (Spencer 2023) from a disabled person’s perspective.

Disability Culture Research Group

Early in my PhD journey, I recognised the importance of building a support network focused on disability culture and intersectional perspectives. This led me to create the Disability Culture Research Group, which has become an essential part of my academic community. The group has grown to include disabled academics and disability ally academic PGRs at the University of Brighton, as well as academics from across the UK and one researcher from Aotearoa (New Zealand).

Figure 4 Artwork by Abi Chapman – Accessify

In June, we held our inaugural symposium, which was a truly inspiring event. (Link to padlet) The symposium helped me see how my work diverges from mainstream disability studies. Rather than focusing solely on rigid disability models, the event explored disability culture through a lens of plurality. This realisation has empowered me to feel more confident in my own approach, which embraces diverse perspectives on disability. The symposium also exposed me to new insights about how other cultures view disability. For example, in Māori culture, there is no word for disability, in fact the concept was created by neo- liberal capitalism in order to segregate and justify the denial of access and resources.

These principles of disability culture are shaping the trajectory of my research. I aim to align not only with Eurocentric interpretations of disability justice but also with global South ideologies that view bodily differences as natural rather than something to fear, pity, or control.

Looking ahead:

In conclusion, my research now centres around three critical areas. First, I am exploring the history of participatory practice, investigating the origins of oppressive structures and understanding how they continue to shape and influence contemporary participatory frameworks. Second, my collaborative fieldwork focuses on the labour of participation, examining the emotional and cognitive demands placed on individuals involved in these processes. Lastly, I am working to develop methodologies that move beyond paternalistic approaches, challenging neoliberal capitalist systems in favour of participatory practices that foster genuine and equitable engagement.

What has been particularly rewarding is allowing the research itself to guide the direction of my work. Rather than imposing a fixed framework, I’ve found value in being responsive to insights that emerge along the way, enabling my research to evolve in a more meaningful and dynamic way. This approach allows me to better engage with both the historical context and lived experiences of those affected by participatory practices, while shaping new methodologies that move beyond “inclusion” and focus on mutual mobilities of all the people involved.

Figure 5 artwork by author

 

 

 

 

 

 

 

 

Collins, Patricia Hill. 1990. “Black feminist thought in the matrix of domination.” Black feminist thought: Knowledge, consciousness, and the politics of empowerment 138 (1990): 221-238.

Mingus, Mia. 2010. “Reflections from Detroit: Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit.” guest post (blog), Incite! 19/07/22. https://incite-national.org/2010/08/23/reflections-from-detroit-reflections-on-an-opening-disability-justice-and-creating-collective-access-in-detroit/.

Spencer, Chantal. 2022. “Rethinking Participatory Design Research Methodologies.” https://rsdsymposium.org/rethinking-participatory-design-research-methodologies/.

—. 2023. “Pressure Points in the System: Ontological Perspectives on the Labour of Changemaking.” Relating Systems Thinking and Design 12.