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Reimaginations and Experimentations through Participatory, Decolonial and Creative Praxis

1. Introduction: Rethinking Disability, Health, and Knowledge

Phase 2 of the Disability Matters programme builds on the urgent call to re-examine how knowledge about disability and health is created, valued, and applied. Colonial patterns persist in how knowledge is defined and who gets to be recognised as a “knower.” This phase responds to these injustices by:

• Centring disabled people as researchers and co-creators of knowledge
• Rejecting epistemic violence and extractive research
• Embracing cross-fertilisation between local, spiritual, and cultural ways of knowing

Grounded in Critical Disability Studies, Southern epistemologies, and decolonial epistemologies, this phase critiques the coloniality of knowledge that privileges western, medicalised, and positivist frameworks over indigenous, embodied, and community-rooted ways of knowing. It seeks to challenge dominant euro-american research paradigms that have historically excluded or marginalised disabled voices—particularly from the Geopolitical South.

This phase further confronts epistemic injustice by shifting away from extractive, top-down models of research. Instead, it embraces Participatory Action Research (PAR) and creative storytelling to centre disabled people as knowledge co-creators of health in their own lives and communities. It positions India as a key site of resistance and knowledge creation in the programme—placing South-to-North knowledge flows at the heart of the research.

2. Core Focus and Questions

Working across India, Singapore, the UK, Australia, and Canada, this phase critically explores how disabled people conceptualise, experience, and imagine health. It asks:

• How do disabled people define and experience health, care, and wellbeing?
• What social, cultural, and political forces shape these experiences?
• How can we co-create new understandings and priorities for health with, for and by disabled people?
• Who sets health priorities, and whose needs and voices are centred or excluded?
• What are disabled people’s aspirations for health justice and livable futures?

3. Methodology: Participatory Action Research Meets Storytelling & Creative Praxis

This phase uses a participatory action research (PAR) methodology that resists linear, institutionalised notions of research and policy. It focuses on relationship-building, co-production, and cultural responsiveness through a creative praxis. 

Participatory Action Research (PAR)
Rooted in the principle of “no research on us without us”, PAR is central to the methodology. It:

• Prioritises collaboration with marginalised communities
• Disrupts top-down research hierarchies
• Promotes collective ownership, co-analysis, and action
• Values embodied, emotional, and relational knowledge

Creative and Arts-Based Approaches
Arts-based methods allow for non-verbal, symbolic, and multimodal storytelling that challenges traditional academic norms. They:

• Enable expression of complex, intersectional experiences
• Include poetry, drawing, video, collage, photography, letter writing, captioning, etc.
• Foster trust, joy, playfulness, and care in research spaces

Key Participatory Activities (Methods):

Criptopia Workshops

• Explore disabled people’s dreams, hopes, and imaginings of inclusive health futures.
• A political act of reclaiming agency and imagining a world where disability is not only included but celebrated as we envisage transformative futures grounded in joy, justice, and care.
• Confront the historical erasure of disabled people from futurist narratives by asserting that disabled lives belong not just in the present, but in the future.

Community Story Circles

• Spaces for disabled people to share personal and collective stories of health and wellbeing through multimodal expression (e.g., drawing, poetry, audio, film).
• Embrace Indigenous, non-linear, culturally specific storytelling traditions.
• Create ethical storytelling environments for reflection, healing, and collective meaning-making.

Policy Mapping Workshops

• Use a “lived policy” and sensing policy framework to examine how disabled people experience policy in their daily lives, not just how it’s written, asking ‘how are policy decisions lived’?.
• Combines critical analysis with creative mapping to challenge exclusionary health policies and envisage more responsive frameworks.
• Speaking back at policy processes to uncover gaps, exclusions, and possibilities marking a shift away from linear and technocratic avenues of policy development to a more iterative and dialogical policy approach.

4. The Role of India: Centring the Geopolitical South

India serves as the anchoring site for this phase, with a deliberate focus on local knowledge(s), community priorities, and intersectionality where disability connects with gender, class, race, caste, place and sexuality.

Collaborations with Disabled People’s Organisations (DPOs) in Delhi: AADI and Bhubaneswar: Swabhiman to include diverse voices, including urban, rural, and marginalised disabled populations.

Knowledge generated in India will inspire the engagements in the UK, Canada, Singapore, and Australia ensuring that the knowledge travels from the South outward, rather than being imposed from above or outside—reversing typical North-South knowledge flows. 

5. Guiding Values

• “Nothing about us without us”
• Participatory, ethical, and community-embedded inquiry
• Long-term, trust-based relationships and connections with DPOs
• Sharing of power, reciprocity, care and nurturance
• Embracing messiness, discomfort and tensions
• Emphasis on joy, playfulness, creativity, and love as radical tools
• Respect for intersectionality, culture, and local spiritual knowledge
• Mutual accountability, transparency, and shared ownership
• Commitment to deep and intentional listening while being mindful of challenging neoliberal understandings of health

6. Our Commitments 

This phase is a commitment to shifting power, redistributing voice, and reimagining the structures that define health for disabled people. It is not just about collecting stories—it’s about reframing health through community wisdom. It seeks to reimagine policy-making, resist exclusionary futures, and highlight disabled people’s embodied knowledge as central to building more just, inclusive, and life-affirming worlds.

By centring disabled knowledge, this work restores care, joy, interdependence, and resistance as its core principles of health.

7. Our Approach to Ethics
Research ethics has long been constrained by institutional procedures that often reproduce colonial power structures and limit genuine participant engagement. Our study challenges prevailing ethical paradigms, demonstrating the necessity of decolonial, care-centered methodologies that centre participant agency, dignity, and collective knowledge production.

The landscape of research ethics is a terrain marked by complex historical negotiations, power dynamics, and ongoing tensions between institutional protocols and ethical ideals. A lot of institutional procedures tend to flatten the complex situatedness of research ethics, reducing ethical considerations to procedural rituals mediated by Institutional Review Boards (IRBs) or Research Ethics Committees (RECs). Traditional ethical procedures, rooted in positivist logics, tend to categorise people and topics, rendering communities as objects of study rather than collaborative partners in knowledge creation (Mauldin, 2017).

The dominant ethical frameworks, epitomised by Institutional Review Boards (IRBs), often:

• Prioritise institutional protection over community well-being
• Define vulnerability through deficit-based narratives
• Maintain strict boundaries between researcher and researched
• Emphasise risk mitigation over collaborative meaning-making

Institutional research ethics, as currently constituted, obscure the ways academic institutions are complicit in reproducing power relations. Key limitations include:

• Over-emphasis on protection from harm
• Risk-averse approaches that reinforce existing power systems
• Conception of risk limited to 'individual rights'
• Primary focus on institutional protection
• Defining sensitivity and vulnerability through active erasure of academia's complicity in social injustice

By examining the tensions between procedural ethics and relational accountability, we interrogate how research can move beyond "damage-centered research" (Tuck, 2009) towards approaches that celebrate community agency, interdependence and collaborative knowledge production. Feminist and Indigenous research approaches offer powerful alternatives to colonial research practices. These methodological frameworks prioritise:

• Relational accountability
• Communal knowledge production
• Reciprocity and mutual respect
• Centring community agency
• Recognising multiple ways of knowing

These approaches challenge fundamental assumptions about research by:

• Rejecting the myth of objective, detached scholarship
• Valuing embodied and emotional knowledge
• Challenging hierarchical research relationships
• Prioritising community benefits over academic career advancement

Things under consideration for our project:

• Conceptualising consent as an ongoing, dialogic process
• Maintaining transparency about institutional processes
• Providing meaningful compensation for community contributions
• Respecting participants' agency and safety
• Love as a critical ethical-political force in this research driving community solidarity, justice-oriented knowledge production, deeper relational understanding

Eve Tuck's critique of "damage-centered research" provides a crucial insight into exclusive focus on pain and loss which is why our research challenges pathologising research practices that define communities solely through experiences of oppression and aim to celebrate community creativity, Speaking With, Not For, by drawing on Alcoff's (1991) critical interrogatory practices, is a significant principle of our approach which reminds us of our accountability to the communities we are part of and are engaged in research with. Nancy Scheper-Hughes' (1995) concept of "militant anthropology" offers a framework for our approach to ethics that rejects neutrality in favour of explicit solidarity with marginalised communities. This connects to Indigenous concepts of "research as ceremony" (Wilson, 2008) where the entire research process becomes an ethical practice rather than a procedural hurdle. Haraway's (1988) "situated knowledges" challenges the myth of objectivity and argues for recognition of the researcher's embodied position, strengthening the critique of traditional ethical frameworks that pretend neutrality while reinforcing colonial power dynamics.

Traditional research ethics frames consent as a one-time event, typically at the beginning of research. In contrast, Guillemin and Gillam (2004) distinguish between "procedural ethics" (approval processes) and "ethics in practice" (everyday ethical decisions during research). They advocate for "ethical mindfulness" throughout the research process, recognising consent as an ongoing, dialogic process that requires:

• Regular check-ins with participants
• Clear mechanisms for withdrawal at any stage
• Transparency about how data will be used and represented
• Opportunities for participants to review and modify their contributions

The journey of ethical research is as important as its destination. It requires constant negotiation, deep listening, and a commitment to dismantling oppressive knowledge structures. Our approach to ethics is not a static, procedural checklist but a dynamic, relational process of mutual learning and transformation. By challenging colonial research paradigms and centring community agency, we hope to develop more just, generative approaches to knowledge production.