The Real Tourette's

Tourette Syndrome (TS) is a disorder characterised by involuntary, repetitive and non-rhythmic motor and vocal tics. There exists a problematic representation of the disorder in the mainstream media that tends to the formulaic sensationalism portrayed by recent TV documentaries. This prevalent image of TS may have a detrimental effect on public service provisions (education, health, in the absence of NICE guidelines etc). Addressing this problem requires a multidisciplinary approach; examining the introspected subtleties of the disorder through sound and movement, led by a research agenda with stakeholders from external parties. All outputs will be produced as a result of co-created research with those outside academia.
This is a proposal for a network of practice-led researchers in art, music and psychology (UH Arts:Sci lab) with Tourette’s Action UK and people self-identifying with tic disorders. Musician, Rob Godman (author of an Impact Case Study for REF2021) will build on his research into rhythmic pattern formation found in music, vocalisations and environmental sound. Filmmaker, Sam Jury's research on suspended trauma, will provide expertise on repetitive movement in performance and moving image.
Amanda Ludlow has twelve years’ experience with publications focusing on the daily impact of living with TS. Tourette's Action will be the main non-academic partner providing expertise across the spectrum of issues facing people with TS and will facilitate focus groups with people with tic disorders.
We propose a series of structured meetings with focus groups allowing us to build relationships and establish working methods with our stakeholders. The anticipated impact will be the establishment of a co-created research agenda. Insights, problems and propositions drawn from these activities will form the basis of a collaborative, cross-disciplinary artwork. Additional funding to produce the artwork will be raised through QR and other funding streams. Longer term, the objective is to use this seed research and initial artwork to form the basis of a bigger AHRC project grant.