What Not To Say To Parents Of Kids With Disabilities
04/29/2010 - 20:24

Parents of children with special needs have their hands full, juggling medical and thrapy appointments, often struggling to keep up with costs, and trying to give their other children the most normal life possible. When people not faced with these challenges encounter someone who is, they often feel compelled to say something.

While for the most part this instinct is well-intentioned, it can easily backfire, and there are also those who speak their mind with no regard to tact. I learned about this today from a powerful presentation by Juby Shapiro, founder of Tafkid, a support group for families like hers that care for special needs children. In one of several excercises intended to sensitize the audience, rabbinical students at Yeshivah Cochavei Torah in Riverdale, to the daily struggles of these families, Shapiro distributed cards imprinted with actual statements made to members of her organization. The challenge to the students: Come up with a good comeback.

That was difficult, because in many cases the young men, after reading the cards, sat there with their jaws dropped. The most shocking example was the statement of a clothing store manager who told the mother of a Down syndrome child that it was a shame to see such an expensive suit wasted on such a child. Another shocker: A woman in a shoe store who was asked to take her developmentally disabled child elsewhere because the child was upsetting other customers. It gets worse: One woman asked a mother "how could you bring that child home?"

But there were more innocent utterings: "It takes a special person to take care of such a child. I couldn't do it." Another was simply "Nebach," a Yiddish exclamation of pity. Shapiro divided the comments into three categories: mean, meaningless and well-meaning. The shoe store clerk and suit vendor clearly fall into the first category, while the "special person" and "nebach" utterers fall somewhere between the latter two. By saying it takes a special person, and excluding herself from that category, the commenter is looking for distance, much the way people who hear of a plane crash might console themselves by saying they rarely fly. "How do you know what you can handle until you have it?" Shapiro asked. As for nebach, pity may make you a moral person but it's meaningless and even offensive to someone weathering these struggles with dignity.

These good-natured future rabbis couldn't well conceal their indignation. One suggested as a comeback to the suit vendor "what shame in this economy to see a good job wasted on you." But Shapiro suggested that humor is always the best weapon. In response to "how could you take that child home," she offered "the hospital had a no refunds, no exchange policy."

So, what, if anything, should you say? Shapiro recalls an encounter in a doctor's waiting room when she observed a woman staring at her daughter and, in no mood, was preparing for the worst. Then, the woman asked "where did you get that velour top with the matching headband?" And a pleasant, normal conversation about shopping ensued. "She found something in common between her child and mine," said Shapiro. "That was the best thing she could have said."

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I thought the article shares important tips that the general public really doesn't know. It's like going up to an overweight woman and saying, "Congratulations on your pregnancy!" Thanks for teaching people a thing or two about class. The sad part is, the people who probably NEED to read this article, probably aren't.
Great article. I am ok with the well meaning people. I try to think what I would have said before I had my child. But really I have a child & he happens to have Down syndrome. He isn't a "down syndrome"!
Yes, a good article, but I was also disappointed to see terms like 'Down syndrome child'
Thanks for the comment. Title has been fixed.
Good article, unfortunate title. Please use "people first" language, such as children with special needs.

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