At last year’s Edinburgh Fringe, controversy surrounded the ‘Funniest Joke’-award presented to comedian Olaf Falafel for his pun-inspired gag about Tourette’s Syndrome.
His joke - “I keep randomly shouting out ‘broccoli’ and ‘cauliflower’ – I think I might have florets” - drew criticism from many within the Tourette’s community, including charity Tourettes Action, for the stereotypes it helped to perpetuate about a hereditary, neurological condition which affects roughly 1% of the population and is characterised by ‘tics’ – sudden, uncontrollable movements or sounds.
Now though, researchers from the universities of Bath and Oxford are turning this controversy on its head by working with comedians who themselves have Tourette’s to use their experiences to help better understand and breakdown some of the barriers that exist for others.
Drawing on their recent research, which was coordinated by the University of Kent and supported by NIHR School for Social Care Research, the social policy researchers present an analysis that there is significant unmet need in terms of social care and support for people in the UK living with Tourette’s Syndrome (TS).
This, they suggest, is in part due to the way in which the condition is typically presented both through comedy but also in the media more broadly, with programmes such as C4’s ‘Life with Tourette’s’. They argue there is a widespread, general awareness of Tourette’s, but a real lack of real understanding about the severity of the condition or its wide-ranging, long-term effects both for individuals and their families. They say people generally assume Tourette’s equates with swearing but argue that is just a small part of it and will not affect everyone with the condition.
Through their recent work, which saw Dr Melina Mali, Qualitative Social Care Researcher in the Nuffield Department of Primary Care Health Sciences, and Professor Rachel Forrester-Jones, University of Bath, conduct qualitative research drawing survey responses from 68 people with TS followed by in-depth interviews with 16, the team highlights stories of the debilitating effects tics are having on people’s lives. Among other revealing testimonies, participants told researchers about the terrible stigma and social exclusion they felt growing up:
“I was kept in the … I was hidden in the cupboards and the rooms. I was never taken out into public. I was even kept away from my own family except from my grandparents.”
On a practical level, participants pointed out that although social and emotional support was often available for children with TS and their parents, resources for adults were limited and could not be easily accessed. The study found that individuals with TS were at a high risk of failing to transition successfully to adult services and suggested that additional preparation is needed:
“At the age of 16, I was just pushed over the edge and told to get on with life. I've not had any inquiries or contact from anyone regarding it … since the age of 16. That was it. That was the end of my care as far as anyone was concerned.”
Broadly, participants felt that their social support needs were not adequately addressed and did not have access to support groups that were specifically for adults with TS.
Lead researcher, Dr Melina Malli, says: “Our findings suggest that in contrast to popular belief, people with Tourette’s may experience many difficulties in their everyday life that are not associated with compulsive swearing. The tics can be debilitating, extremely painful and everyday chores around the house, such as preparing a cup of tea, can be extremely difficult.
“Many of our participants with Tourette’s reported that they rely on their partners or family members for support as they would be too ashamed or embarrassed to ask for help for a “swearing disease”. Many talked about the loneliness linked to having a condition that renders them a joke, whilst others highlighted the lack of reasonable adjustment their employers were willing to make for them. These are all aspects of Tourette’s that have not been talked about, as the condition has been trivialised through humour and jokes.”
The study concluded that social care workers need to have specialist knowledge in relation to TS, its psychosocial consequences and underlying nature to be able to respond more holistically to people’s needs.
This work has spurred a new project which will help inform an upcoming book - ‘Tourette’s Syndrome, Stigma and Society’. Humour will form part of this work, with chapters focusing on the role of comedy in perpetuating but also challenging some of the stigma which persists.
Professor Rachel Forrester-Jones, Director of the Centre for the Analysis of Social Policy at the University of Bath explains: “For many with Tourette’s Syndrome we find that the stigma they experience is as a direct result of feeling that people are laughing at them. Over the years jokes about Tourette’s have resonated and have shaped what people think about the condition, yet in a very narrow and specific way. This matters and has tangible impacts on people’s lives because, partly as a consequence, we’ve too often downplayed the severity of Tourette’s and the support people need.
“This new work is a recognition that comedy is a powerful tool. But by turning this issue on its head and by talking with comedians who themselves have Tourette’s we want to give them ownership of the issue, empowering them to shape the debates and discourse which influence attitudes towards Tourette’s.
The researchers are working with a number of comedians with TS based both in the UK and abroad, including Gerald Harris, Dan Zerin and Yaïra van Nielen.