I humbly acknowledge the diverse knowledges and sovereignty of all First Nations and displaced people and pay respects to the patients, scholars, healers, friends, and disability communities that have supported me throughout my PhD, and to elders past, present, and emerging.
To play a small part in creating a more accessible and just world, I choose to make my research accessible, open, and community-informed, and use open scholarship, and to share Kaupapa Māori research methodologies, and universal design principles wherever possible.
While academics and governments are starting to see the value in funding “lived experience” research and expertise in recent years, Kaupapa has a long history of putting community expertise and inclusion first in activism and research for both disabled and First Nations communities. Including and transcending co-design and the lived experience lens, Kaupapa Māori methodology adds an experiential aspect to knowledge generation and in essence is a combination of “nothing about us without us” and “with community, by community, and for community” and “Mō tātou, ā, mō kā uri ā muri ake nei” “for us and our children after us.”
Here are a few ways we can bring an inclusive, sustainable, equity-driven spirit to all levels of research design and development, and how it has shaped my approach to my PhD research and teaching in practice:
Inclusive education, reflexive practice, universal design — reflect on positionality, power, implicit bias, and epistemic injustice, elevate erased or silenced voices from all forms of evidence, learn how to teach well and communicate effectively for CALD and neuro-inclusion.
Clinically-representative research sample — aim to include knowledge from diverse cultures and the most severely affected and mobility-limited participants who have been arbitrarily erased or excluded from traditional on-site single-disease research studies.
Person-centred gestalt design — consider the invisible sample: “who is centred, who is represented, who gets to speak, who is silenced, missing, or erased” from medical literature, clinical studies, population health, research samples, follow-up, and knowledge sharing.
Equity-driven data collection — prioritise the accessibility needs, culture, language, and convenience of the patient community over the convenience of the institution or research team.
Co-design, co-analyse, co-produced research — radically interdisciplinary collaboration with previously silenced or erased voices, prioritising community and researchers with relevant lived experience. Ensure each stage of the research is community-guided. This include literature and involvement from disabled, BIPOC, neurodivergent, queer and intersectional authors, patient-scholars, healers, analysts, artists, students, community connectors, and data scientists.
Share accessible resources — speak like a real person, write for real people. Communicate discoveries clearly to scientists, health professionals, leaders, and intersectional patient communities. Use tools that make it effortless to read, watch, listen, remix, share, and translate.
Accessible knowledge generation, not just consumption — use approaches and tools that are open and accessible to me, and the community this research is conducted by, with, and for. Share the open approaches and tools I use, make it easy for those who want to do the same.
