Protesting against the exploitation of Tourette Syndrome (TS) for laughs in the media, the Tourette Syndrome Association (TSA) is mounting a vigorous campaign to halt distortions of this much misunderstood neurological disorder. Actress Neve Campbell, whose younger brother, Damien, has Tourette Syndrome, is joining in the Association’s new awareness efforts.
“By reducing the stigma and misunderstanding associated to Tourette Syndrome, and educating people about its more common symptoms, this campaign will help foster acceptance and hopefully bring an end to discrimination for those living with TS,” said Campbell.
A print public service announcement, “It Ain’t Funny & It Ain’t True; Exploiting Tourette Syndrome for Laughs” has already appeared in Variety and The Hollywood Reporter, and is now being provided to thousands of national newspapers, magazines and entertainment industry publications. Outreach to professional organizations of film and television producers as well as entertainment writers is also a high priority.
“Growing public awareness of a formerly little known condition has brought about a number of recent films and television program references which sensationalize and distort symptoms, said Judit Ungar, President, TSA. “These hurtful references and films are created to grab audience attention, and not to portray the disorder as it really is.”
As for the potential damage of highly inaccurate, negative references to the disorder, the association charges that these encourage a climate of discrimination in such vital areas as employment, education and social acceptance.
On the positive side, Ungar notes that the entertainment industry deserves credit for spreading the word about the very existence of TS. Many a youngster and adult has been troubled by its symptoms without even being able to name the cause. In fact it has been said that more cases have been diagnosed by viewing or reading information from the media than in a doctor’s office.
Neve is currently developing and producing a film, “A Private War,” from a screenplay written by her friend, stuntman Peter Antico about his own struggle with Tourette Syndrome.
“I am truly excited about being able to make a movie that will depict Tourette Syndrome in a realistic and compelling way and really open people’s eyes about what TS is and what it isn’t,” said Neve.
Numbering some 40 in states around the country, local TSA chapters are being enlisted to bring the program to scores of locales across the country. Of the many thousands of Americas with TS, demographic studies show that fully 85 to 90 percent are not prone to outbursts of involuntary obscene language, a symptom known as coprolalia, and yet that is the symptom most often seized upon to exploit when developing characters or referring to people with TS.
“The vast majority of the TS population has mild symptoms, and they lead productive lives as teachers, technicians, surgeons and athletes,” said Ungar.
TSA hopes this campaign will reach those who are uneducated about TS and its symptoms and thus lead to tolerance and improved understanding of those with TS in the work place, in schools and in public places.
Marked by involuntary twitching and vocal tics, TS is an inherited, neurobiological disorder frequently misunderstood and misdiagnosed, affecting more than 200,000 Americans. TSA is a national voluntary organization that directs a network of 45 chapters and more than 300 support groups across the country. For more information on TS, call 1-888-4-touret or visit http://tsa- usa.org.
Revision date: June 18, 2011
Last revised: by Andrew G. Epstein, M.D.