Jo Bervoets (UAntwerp) did research into Tourette’s from a theoretical and an ethical perspective.
“Letting Tourette’s be?”
Tourette’s is getting more and more in the news headlines, for instance when famous people like Billy Eilish open up about their diagnosis. “Tourette’s might be the new autism or ADHD,” says Jo Bervoets. “With the recognition that it is more common than initially assumed, its stereotypical portrayal can also be adjusted.” Bervoets’ doctoral research shows that acceptance of Tourette’s must replace mere focus on its suppression.
Tourette’s is named after the French neurologist Gilles de la Tourette who made the first diagnosis at the end of the 19th century. People with the ‘Gilles de la Tourette Syndrome’ (as it is officially called) have multiple tics. These are involuntary movements, such as blinking the eyes, as well as movements that cause noises, such as blowing raspberries. Jo Bervoets (Centre for Ethics, University of Antwerp) looked at current theories about Tourette’s and checked whether these were compatible with the experiences of people with Tourette’s.
Stereotypes and stigmatisation
Tourette is often and incorrectly identified with cursing. “A small percentage of people with Tourette’s do curse or act in other ways that are considered socially inappropriate or disturbing,” says Bervoets. “Whilst this is not something to sweep under the rug given it is a part of the experiences of people with Tourette’s, we should not narrow Tourette’s to this aspect only. If we do so, it quickly becomes a caricature that is too often exploited to get an easy laugh. In conversation with Touretters, as they often refer to themselves, it becomes clear that the stereotypical and stigmatising view is the main risk factor for their mental health.”
In the last decades, Tourette’s has been seen as an individual neurological problem. “This view is an advance over the moralizing ideas about tics when the diagnosis was still unknown. However, my research makes clear that reducing Tourette’s to ‘a brain condition’ does injustice to the experiences of Touretters. In these experiences the expectations of others as to what constitutes ‘normal behaviour’ take a central place. Not only do these expectations lead to social isolation, but they also increase the frequency and intensity of tics.”
Beyond the Catch-22 of Tourette’s
One of the Touretters interviewed by Bervoets strikingly catches this complexity: “Exams put me in front of an impossible choice: either to disturb others with my tics or to hinder myself by inhibiting them.”
To avoid such dilemmas, Bervoets proposes to look at Tourette’s through the lens of neurodiversity. “I am autistic myself and, thanks to the neurodiversity movement, a scientific revolution in autism research is already taking place,” says Bervoets. “Instead of focussing on what we are according to stereotypes unable or unwilling to do (like social interaction), autism is seen as a different, an atypical, way of dealing with our environment. Based on this research I propose that spontaneity, vitality, and an urge to get things ‘just-right’ (for instance: organising them in specific ways) are the basic characteristics of Tourette’s.” Does this mean that Tourette’s suddenly becomes a superpower? “No, tics are often painful and disturbing, even without an audience. But recognising that the environment plays a role in how Tourette’s comes to the surface allows us to gain a broader view on it. For instance, it helps in bringing the attention to how Tourette’s manifests differently in women or what connection it has with OCD and ADHD. And most importantly: when onlookers can let Touretters just be, then they actively contribute to their mental wellbeing.” This ‘letting be’ obviously does not mean that there is less need of diagnoses or support. On the contrary, it is only in recognizing Tourette’s in all its nuances that we can empower Touretters.
Name and contact details: Jo Bervoets, jo.bervoets@uantwerpen.be, +32476471298