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Tourette Syndrome Exploration

Sam Jury in collaboration with Rob Godman, Amanda Ludlow and Danni Phoenix-Kane: 2024 - Current

The Tourette Syndrome Exploration Project is a multi-faceted undertaking by a collaborative partnership of Creative Arts and Psychology, with the common goal of showcasing how Tourette Syndrome is experienced sonically and experientially.

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).

The project encapsulates several key outputs namely:

Everyday Tics

In 2024, a group of collaborators bringing together lived experience, the arts and psychology came together to explore the shared question – what does a typical day, for an adult living with Tourette’s, look and sound like? The resulting film, Everyday Tics, aims (to counter the more sensationalist representations of Tourette’s) by showing the complex and often nuanced expressions of tics as experienced during an average day. Filmed by a group of eight focus group members with lived experience, the film also details the some of the lesser-known challenges of living with the condition. While there is a significant body of research focusing on paediatric and early adolescent cases, less is known about the expression of tics and how their impact on everyday life in adulthood. This project provides the seed research to address this gap.

Funded by a University of Hertfordshire AHRC Impact Accelerator Award.

Doctor! Doctor! Lets Talk About Tourette's

As part of the Art Sci Biennial Plus Symposium of 2025 entitled Mind + Matter: Locating Co-creation, Sam Jury and Danni Phoenix-Kane (a passionate Tourette PhD researcher with lived experiences of the condition), started the journey of tic representation through art. The symposium showcased several artistic pieces including:

  • Extracts of a letter exchange by Sam and Danni, who through Doctor personas, attempted to described the evolution tourettic presentation within a fictitious individual, with calligraphy from Mark L'Argent
  • A film reel demonstrating the complex nosology surrounding disorders impacting motor function and controlled movement
  • Seed filmwork capturing concepts of tic performance
A written letter
A written letter
A written letter
A written letter
A written letter

Mistaken Malady

(2024 – ongoing works in progress) Sam Jury / Danni Phoenix-Kane

Mistaken Malady is a project that asks if the forms of film, sound, dance and installation can embody the complexity of Tourette’s Syndrome.  This is a collaborative project between artist Sam Jury and psychologist Danni Phoenix-Kane, who was formally diagnosed with the syndrome in her early 30s. The project is inspired by the broader AHRC Funded research project ‘Everyday Tics – Reframing Tourette’s in the Public Domain’ led by Rob Godman (Music) and Dr Amanda Ludlow (Psychology).

For over a year, Jury and Phoenix-Kane have been corresponding with each other, in a Victorian-style of letter writing, deploying alter-ego personas of medics in the context of early psychiatry.  This semi-fictional, semi-autobiographical approach serves to depersonalise a very personal and traumatic subject – the onset or reemergence of observable Tourette’s – giving creative space to be able to ask the most obvious questions and in exchange, offer nuances and honest responses.

The project has grown around this and in development will incorporate choreographed movement (dance and calligraphy), motion capture animation, contemporary prose and monologues from people with lived experience.

Mistaken Malady is scheduled for completion late 2026.

A hand written letter

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