A Message from the NDRP Chair – A Tribute to Dr Ellen Fraser-Barbour

The National Disability Research Partnership (NDRP) Board, Research Committee, and staff were deeply saddened to learn of the sudden death of Dr Ellen Fraser‑Barbour last weekend.

Ellen was a vital and deeply respected member of the NDRP Working Party and played a critical role in shaping the vision and strategic foundations of the organisation. An early career researcher who completed her PhD at Flinders University, Ellen was also a qualified Disability Developmental Educator (allied health professional) and brought both professional expertise and lived experience of disability to everything she did. Her work was grounded in a deep commitment to justice, inclusion, and the leadership of people with disability in research, policy, and practice.

Ellen was a passionate advocate for disabled researchers. Her academic and professional focus centred on recognising and preventing discrimination, violence, harm, and neglect experienced by people with disability. Ellen bought to the Working Party thoughtful discussion, clear ideas, a willingness to challenge the status quo, and a strong commitment to ensuring that research genuinely reflected the priorities of people with disability. She helped establish the NDRP Guiding Principles that continue to shape and inspire the work of the NDRP today.

In a 2021 NDRP blog co‑authored by Ellen and her then PhD supervisor, Professor Sally Robinson (now an NDRP Research Committee member), they called for the sector to “encourage significant investment in the career development of disabled scholars and researchers and to build a ‘third wave’ of inclusive research—where leadership is by disabled people, above and beyond our contribution to research practice (valuable as this is).”

NDRP Board Member Professor Anne Kavanagh, who chaired the NDRP Working Party, reflected on Ellen’s contribution, saying:

“Ellen brought enthusiasm, creativity, vision and wisdom to the Working Party that pushed me and others to move out of our comfort zones. She was completing her own PhD at the time, and her experiences were critical to imagining an NDRP that enabled many more disabled researchers like Ellen to flourish. She lived and breathed genuine disability-led research, and I loved working with her. She was funny, an ‘out of the box’ thinker, and down to earth.  While we will miss out Ellen’s own research and policy contributions, her legacy will continue in the work of the NDRP.”

“On a personal note, I held Ellen with the highest regard for her scholarship, activism and generosity, I often thought of her and just wish we had had that boogie board we talked about.

"We loved working with Ellen. Her presence made every conversation richer. The NDRP would not be where it is today without her insight and her commitment to disability‑led research. She made a significant contribution, and we are so grateful to have worked alongside her.”

NDRP Board Chair Clare Gibellini said:

“This is an incredibly sad time for the disability community, with the loss of one of the bright lights in disability research. We are all better for having experienced Ellen’s leadership, advocacy, and generosity of spirit, and it has left an enduring mark on our organisation and the broader sector. Whenever I was fortunate enough to share space with Ellen, I was always struck by her passion and determination to make lasting, measurable change for people with disability. I know her legacy will be felt for generations to come. We extend our heartfelt sympathies to her family, friends, colleagues, and all who knew and loved Ellen during this time of great grief and loss.”

Read a selection of Ellen's work on the APO database.

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