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Sunday, November 24, 2002

Alive and well


Readers challenge advice on Tourette's

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My Oct. 27 column about Tourette's syndrome inspired considerable reader comment. It was my response to a reader wondering how to handle the problem of a relative with Tourette's syndrome blurting out racial slurs at a multiracial wedding ceremony. Not everyone agreed with me.

My take on the situation was simple: If the man is a distant relative, leave him off the guest list. If he's someone wanted at the celebration, ask him to work on suppressing tics (sometimes possible) and provide information about Tourette's syndrome to other guests.

Several calls and letters chastised me for insensitivity. They argued that a true advocate for people with disabilities would put the person first and would realize that to suggest leaving someone off the guest list was to treat him as an outcast, discriminatory and exclusionary.

One reader, the mother of a 9-year-old with Tourette's syndrome, put her disapproval this way:

"The first question that I would have for the relatives that are so discomforted by this man's behaviors, would be `Do you think that he is comforted by the way he acts, and the repetition of such words that others find vulgar?'

"Please tell me for one minute, do you think that a person bearing the disease of Tourette's syndrome is at all comfortable with the tics that he or she may demonstrate? I can tell you that no they are not comfortable. The tics for them, are just as embarrassing for them to demonstrate amongst several onlookers, as they are for the onlookers."

Jean Reardon, director of the Tourette's Syndrome Association - Ohio, wrote:

"You addressed a tough situation very nicely. . . . I would have preferred that you say a child may be able to learn to suppress tics, rather than a child can learn. . . .

"Not all children (or adults) are able to suppress their tics. It is a bit misleading to say that they can suppress them.

Thanks for the good information on Tourette's Syndrome."

A Cincinnati professional who was diagnosed four years ago with Tourette's syndrome wrote:

"Your column shed some great light on a widely misunderstood condition.

"Most especially, I thank you for making the point that coprolalia (outbursts of cursing, abusive language) is actually very unusual among people who have Tourette's. Most of us just make weird noises and facial grimaces - the outbursts of cursing are indeed right out of TV and the movies. They happen, and yes, they're controllable to a degree, but they're not really the main `thing' about TS.

"I also thought you gave a very good answer to the person regarding the wedding guest with TS. Some people with Tourette's might disagree, but I agreed that for something as important as a wedding - especially if he's not a centrally important guest (e.g. a close relative) - it's probably best to just invite him to the reception, if at all."

My last word (for now) on the subject is this: My position with regard to advocating for people with disabilities is one always based in equality. Equal treatment does not always mean favorable or preferential treatment.

Certainly, there are other reasons having nothing to do with disability, that might urge a couple to leave particular individuals off the guest list. If a person is a distant nonessential relative to the ceremony, whether he or she has a disability or not, my sense is that this day belongs to the two celebrating it, and it is their prerogative to define their own guest list.

Still, as we approach our day to give thanks, I am thankful for those who challenge and make me think, thankful that we have come at least far enough as a culture that excluding someone because they have a physical or cognitive difference is no longer an automatic occurrence, and thankful that inclusion and understanding among those with and without disabilities is growing.

Contact Deborah Kendrick by phone: 673-4474; fax: 321-6430; e-mail:dkkendrick@earthlink.net.




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