Dr Daniel P. Jones from our Institute for Medical Humanities and Department of Sociology has been awarded a prestigious Wellcome Early-Career Award to transform understandings of Tourette Syndrome.
Tourette Syndrome – a disability characterised by uncontrollable movements and vocalisations known as tics – affects an estimated 1-2% of the global population.
Recent research and public discussions of the condition are dominated by biomedical and deficit-focused approaches.
Dr Jones’s five-year project will move beyond these frameworks, exploring Tourette Syndrome as a lived, cultural and political experience shaped by identity, community and digital technologies.
Dr Jones’s project will centre the knowledge and experiences of Tourettic people, especially those that have historically been underrepresented in Tourette research including global majority ethnic, queer and trans communities.
Through interviews, ethnography, zine-making and movement workshops, it will explore how digital technologies like online therapy, wearable devices and social media are affecting their experiences of diagnosis, treatment, stigma, community building and self-understanding.
The findings will highlight new possibilities for the future of research into Tourette Syndrome, public understandings, healthcare practice and policy.
Tourette Syndrome is more visible than ever before, yet many discussions remain focused on diagnosis, symptoms and cure. This project creates space to ask different questions about culture, identity, creativity and community, while foregrounding the lived experience and expertise of Tourettic people themselves. I am delighted that Wellcome has recognised the importance of this work
The project is a partnership with organisations, researchers and Tourettic communities across four countries, including TIC Hull and Yorkshire, Tourette Association of Canada, Tourette Association of Malaysia and the Tourette Association of New Zealand.
This award is a tremendous achievement. Bringing together sociology, creative methods, critical disability scholarship and international academic and charity partners, Dr Jones’s project will evidence the value of medical humanities approaches to health research and establish Durham as a leading centre for the study of Tourette Syndrome.
Our Department of Sociology is recognised internationally for its leading collaborative and community-led research on health, health activism and social justice. Dr Jones’s innovative project is an exciting opportunity to build upon this work.
Towards Tourettic Futures will run from September 2026 until 2031, hosted by our Institute for Medical Humanities and Department of Sociology.
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