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To cite this work: Jones, D. P. (2025). Thoughts toward Tourettic Studies. Disability Dialogues. ��«Ӱҵ: iHuman, University of ��«Ӱҵ. 

Daniel P. Jones is a disability scholar and creative practitioner working in interdisciplinary and collaborative ways onTourette Syndrome and disabled-neurodivergent embodied experiences more broadly. His work has also covered creative methodological interventions and themes of inclusivity, access, and pedagogy in Higher Education spaces internationally. He is currently one of the Research Associates on the Wellcome Anti-Ableist Research Cultures project, leading the Development strand of the project, which focuses on accessible academic events and inclusive research methodologies. 

Tourette Syndrome is something that is increasingly on the radars of people. Over the last decade, particular interest has been taken by medical professionals, social science researchers, and popular/broadcasting media. As a result, many of us have at least heard about Tourette Syndrome, regardless of how well we understand it. As a Tourettic researcher of Tourette Syndrome myself, I have written about my own experiences of engaging in TS research spaces, as well as my experiences of TS more generally speaking (Jones & Phoenix-Kane, 2025; Jones, 2024). Ultimately, my engagement in and around a wide variety of Tourette Syndrome spaces has left me asking questions of what next? TS continues to be stigmatised across academic and public spaces. This is something that as a Tourettic researcher of Tourette Syndrome myself I have engaged with criticising, whether pushing back against the witch hunt for the cause of supposed spreading of tics (Conelea et al., 2022), the documentary programmes that incite fear and worry surrounding Tourette Syndrome (Jones, 2022) or the appropriation of tics in new choreography and contemporary dance (Nurmukhametova et al., 2022a, 2022b, 2023). 

However, there is much more to be done as researchers and community members like myself continue to push back against stigmatising approaches to Tourette Syndrome that plague TS discourse currently. The constant fighting leaves me wondering what it might mean to move beyond the standard practice of being required to start every piece of writing I do about Tourette Syndrome with one variation or another of ‘Tourette Syndrome is a neurological disability or disorder that is characterised by tics - impulsive vocalisations or movements such as coughs, grunts and twitches alongside more complex words and series of actions’? What would it mean to go to a conference and be acknowledged not only as a lived experience community member but as a researcher and Tourette Syndrome scholar as well? What is the future of Tourette Syndrome research? What is next for the study of Tourette Syndrome and the people it most impacts (Tourettic people them/ourselves)? 

In TS research, there is a hesitancy surrounding the term Tourettic (cf. Ne’eman, 2023; Jones, 2023) but what if the future of TS research included a shift to, or at least dedicated space for, not the study of Tourette Syndrome but rather the Tourettic? Imagining a future for TS discourse, I hope for a future of centering the most affected rather than non-Tourettic stakeholders in Tourette Syndrome such as the parents, carers, siblings or partners of Tourettic people. What for a shift away from studying ‘syndrome’, and towards Tourettic culture, people, places, experiences, joys, woes, politics? I’d like to imagine a future whereby it’s not considered ‘too controversial’ to publish criticism about wearable tech that delivers electric shocks in an attempt to minimise tics and encourage compliance with societal bodily norms, and perhaps even one where compliance and erasure was not the goal; where genetic testing was not done in order to allow the elimination of Tourettic people; a future where global majority ethnic, trans, and other multiply minoritised experiences of Tourette Syndrome are sought out and represented in order to allow for better inclusion in community support spaces. There are many desires for the future of TS research that I have, all of which boil down to a person centred approach in line with Bervoets et al.’s person-focused approach (2023) that considers Tourettic bodies, politics, culture and so on. This is a direction I see for Tourette Syndrome research - a Tourettic studies, of sorts, that offers space for the consideration of all things Tourettic with interdisciplinarity in mind; a space for medical science, social science, the arts, and the humanities to come together with the Tourettic community and collaborate on priorities for the future of TS discourse. 

References

Bervoets, J., Beljaars, D. & De Jaegher, H. (2023). Letting Tourette’s be: The importance of understanding lived experience in research and the clinic. Developmental Medicine & Child Neurology, 65(11), 1422-1428. 

Conelea, C. Bervoets, J., Davies, E. B., Varner, K., Malli, M., Jones, D. P., Beljaars, D., Nash, B., & Capriotti, M. R. (2022). A Call for Caution: “Stop That” Sentiments Threaten Progress in Tic Disorder Science, Healthcare, and Advocacy, Brain, 145(4), e18-e20. 

Jones, D. P. & Phoenix-Kane, D. (Forthcoming). Tourettic research of Tourette Syndrome: some reflections, Neurodiversity. 

Jones, D. P. (2023). Tourette Syndrome and cautious neurodiversity-disability categorisation, Developmental Medicine & Child Neurology, 66, 816-817.

Jones, D. P. (2022). A call for solidarity-focused programming: Channel 4’s disability code and the representation of Tourette Syndrome in “Scarlett Moffatt Investigates: Britain’s Tourette’s Mystery”, ViewFinder, 121. Available at: . 

Ne’eman, A. (2023). Tourette syndrome and Tourettic persons: Internationalizing neurodiversity across diagnostic borders. Developmental Medicine & Child Neurology, 65, 1417-1417.

Nurmukhametova, E., Mellon, M. & Jones, D. P. (2022a). KLAZO, Resolution Festival, The Place London. Performance video available at:  

Nurmukhametova, E., Mellon, M. & Jones, D. P. (2022b). KLAZO, Emergency 22 Festival, Contact Theatre Manchester. 

Nurmukhametova, E., Mellon, M. & Jones, D. P. (2023). KLAZO, Social Model & More Festival, Theatre Deli London.