Dr Kirsten Harley
Dr Kirsten Harley (she/her/hers) lives on Guringai land in Sydney, and is an Honorary Lecturer in the Centre for Disability Research and Policy in the University of Sydney’s Faculty of Medicine and Health, and a Board Member of MNDNSW. In 2013, Kirsten was completing a postdoc and about to embark on an ARC-funded team project on how Australians navigate the healthcare maze when she was diagnosed with motor neurone disease. She has progressively become paralysed and lost the ability to speak and breathe, and uses a NeuroNode to communicate, a ventilator and has a team of carers providing round-the-clock care.
She has become a self-described “passive activist” for MND, including giving the opening address at the 2021 national MND Australia Conference with her teenage daughter Kimi, speaking at the Parliament House launch of MND Australia/Deloitte’s report on the economic cost of MND and the MNDNSW Day of Hope and Remembrance, being interviewed for media outlets such as the Project, ABC News, the Today Show and A Current Affair and appearing in social media campaigns including the Fading Symphony.
Writing about her decision to have a tracheotomy and laryngectomy in 2018 was the catalyst for starting her blog.
During the Covid pandemic she wrote about lockdown for the ABC and subsequently gave evidence to the Disability Royal Commission. Kirsten wrote “Living with motor neurone disease: an insider’s sociological perspective” with Karen Willis (Health Sociology Review, 2020) and contributed to MND Australia’s Guide to end of life care. She is currently collaborating on a project about inclusive videogames for people with MND with Ben O’Mara, Matt Harrison and Natasha Dwyer. She is also the author of publications including Australian Sociology: Fragility, Survival, Rivalry (with Gary Wickham, Palgrave Macmillan, 2014) and co-edited Healthcare Choice: Discourses, Perceptions, Experiences, Practices (with Jon Gabe and Michael Calnan, Current Sociology, 2015) and Teaching Sociology: Reflections on the Discipline (with Kris Natalier, Journal of Sociology, 2013).
Kirsten has previously worked in policy and audience research roles at the ABC, and in academic teaching and research, and held positions on the Australian Sociological Association (TASA) executive, and the University of Sydney’s Postgraduate Representative Association (SUPRA) and Students’ Representative Council (SRC). She received the University of Sydney’s inaugural Rita and John Cornforth Medal for PhD Achievement in 2011, a University Medal for her arts degree with honours in sociology from the University of New England, and also has a science degree from Sydney University.