Tourette syndrome is less about bad language and more about poor communication. Adam James reports.
It is easy to misunderstand one PhD researcher as he walks the corridors of the psychology department at Manchester Metropolitan University. Rob Evans is a stocky 32-year-old Gulf war veteran - the one with a crew cut and body piercings. He also makes strange noises and swears a lot. In fact, if you met Evans, he would probably call you a **** or a dickhead. On first impressions you might consider him a rather rude man. But you would be wrong.
Evans's expletives are the result of Tourette syndrome, a neurological condition characterised by involuntary tics, noises and swearing, which affects 29,000 people in the United Kingdom. It is a condition that Evans has successfully lived with since he was six.
Once one is aware that Evans's language is uncontrollable, it is hard to be offended by the obscenities that pepper his speech. He has tried taking the drug Ritalin to subdue the condition, but he found its sedative side-effects turned him into an emotional "mummy". Wary of becoming a "disempowered" patient, he was keen to avoid medication. "As a holistic whole being, I am happy with Tourette. There is nothing to cure," he says. "I am not going to sit in a corner and hide."
Over the years, he has had to become a master of diplomacy, learning how to cool down potential confrontations -such as pub thugs who have approached him, challenging: "Who are you calling a ****?" "I explain to them that I mean to offend no one and it is something I cannot control," Evans says. "I can stop for a while. But it is like sitting on a rocket," he says. "It would be like me asking you to stop blinking for five minutes. Cunt."
After his stint in the armed forces, Evans went to work for an insurance firm, but was sacked for affecting the company's "productivity". It was then that he consulted a counsellor, who became the first person to suggest that his behaviour resembled TS.
Feeling a need for a "life change", he turned to academia, completing an access course and enrolling to study psychology at Manchester Metropolitan University. While studying for his degree, he was introduced to traditional psychological and psychiatric medical models that defined TS - whose exact cause is unknown - as a disabling "disorder" where patients "suffer" cognitive deficit symptoms including "coprolalia" (swearing) and "copropraxia" (obscene gestures), and where medication is the treatment of choice. Generally, Evans agreed with such views.
But, while applying to do a PhD, he met critical thinkers such as Joe Whittaker of Bolton Institute's department of education and Ian Parker of Metropolitan's department of psychology. They gave him a wider political perspective, helping him to question how the pathologising of children who "make noises" risked not only turning them into long-term psychiatric patients, but condoned their exclusion from mainstream schools.
Evans is vehemently anti-exclusion. "Exclusion of any child from mainstream schooling is emotional apartheid," he says.
After further study, Evans became convinced that the aims and needs of medicine did not necessarily match those of people with TS. "Whereas psychiatry tries to stop the noises of someone with Tourette, those with the diagnosis want to change how the public understands it," he says. "What really angers people with TS the most is being mimicked and mistaken for a drunk. This is the misunderstanding we experience day in, day out. Medication cannot cure that."