International Stuttering Association

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Re: Informing the public

From: Jaan Pill
Date: 10/10/01
Time: 10:04:43 PM
Remote Name: 154.20.71.238

Comments

Dear John,

I was very much interested to read your comments.

The advice of “letting non-stutterers know that it's not helpful to try to complete a sentence for a person who stutters” might, indeed, not be acceptable to some individuals or associations in the world.

The strategy that you have described -- that is, to advise non-stutterers to just ask a stutterer whether he of she does or does not appreciate it when the listener tries to complete a sentence for them -- merits close consideration.

I personally like the approach of not telling people to finish the sentences of people who stutter, and have given that advice in my most recent TV interview, but what works for me won’t necessarily work for others.

I would like to add some general comments (of my own, for what they may be worth).

1. First of all, it's worth noting that inaccurate and stereotyped views about stuttering are prevalent around the world, according to data that has been reviewed by many researchers. As Ken St. Louis kstlouis@wvu.edu pointed out in his keynote presentation at the Sixth World Congress for People Who Stutter, in Ghent, Belgium in July 2001, most studies that have been conducted to date indicate that the following statements summarize how the general population views stuttering:

· There's a belief that stutterers are shy, nervous, introverted, fearful, weak, etc. · There's a belief that stuttering reflects psychological difficulties. · There is uncertainty about cause. · Many people have inaccurate information about the nature of stuttering.

Ken's IPATS project (International Project on Attitudes Toward Stuttering) is aimed at getting more accurate information about precisely how stuttering is viewed in different countries. The project also seeks to develop a way of measuring changes in public attitudes in response to public education efforts aimed at changing public attitudes toward stuttering, and toward people who stutter.

Ken St. Louis believes that people who stutter themselves are the only group that consistently has an interest in changing public attitudes. In his view, speech professionals can and will help, but at least in the USA, most speech professionals pursue interests in areas other than stuttering. For example, the ASHA special interest division on fluency disorders includes less than one percent of the total membership of ASHA.

2. Ken has made two suggestions for additional areas to possibly focus on in public education efforts. He notes that the IPATS research to date indicates that most attitudes about stuttering are quite similar from country to country.

But one area that shows differences is with respect to what people believe they should do, when talking with someone who stutters. He suggests, in this context, that it might be useful to focus more on what people should "do" when dealing with a person who stutters, rather than information on cause, prevalence, and other interesting facts about stuttering. Some useful "what to do" resources include this one (and I’m keen to hear from anyone about any other resouces):

http://www.asha.org/speech/disabilities/stuttering.cfm

At the ASHA site at the above URL, we’ll find this advice:

********************

Talking to People Who Stutter · Try not to finish sentences or fill in words. No one likes words put in his or her mouth. Problems can also multiply if you guess wrong.

· Avoid suggestions such as "Slow down," "Relax," of "Take a Breath." If these suggestions worked, the person wouldn't stutter.

· Wait patiently until your conversational partner is finished speaking. Maintain eye contact and try not to look embarrassed or alarmed.

· Talk about stuttering openly. It should not be a taboo subject. Your friend or family member will appreciate your interest in the subject.

· Do not be afraid to say, "I' m sorry, I didn' t understand what you said." No matter how much of a struggle your communication partner had with stating a point or idea, it is preferable to say something rather than to guess what you think was being said.

· Talk in a relaxed, slower than normal manner.

· Try not to interrupt.

· Do not criticize or correct the speech.

******************** Of course, the viewpoints expressed by the American Speech-Language-Hearing Association are but one of the many possible viewpoints that one can encounter about stuttering.

I think that the ideal way to address this issue is to take a data-oriented approach to gathering information about which advice about what to “do” would work the best.

Asking some people what they think is one way to gather data. Another way is to conduct public education campaigns with similar audiences, and then find out (through structured, well-designed surveys) which message leads to the greatest change in public opinion.

Politicians and corporations conduct market research all the time, to see how well their messages come across. Typically, such research involves huge sums of money, sums that self-help associations may not have.

However, one of the long-term goals of the IPATS project is to develop a reliable survey instrument (for use in any language or country) that can be used to measure the effectiveness of different messages aimed at public education about stuttering. That to me is a very exciting part of the project.

In the meantime, I have no evidence to say whether the approach ASHA has described (with regard to what to tell non-stutterers to do), or the approach you have described, John, is the preferable one.

In that regard, each ISA national association that conducts a public education campaign is free to choose its own message.

3. Ken's second suggestion is for us to tell and share our stories. In this context, he has referred to the research of Thomas Klassen, a sociologist at York University in Toronto. His email address is tklassen@YorkU.CA .

Thomas has reported a study where he asked non-stutterers to rate an individual who stutters, an individual that they know personally. Such an individual was identified by each respondent in the study. This is the only study that Ken St. Louis knows of that did not find people speaking about the typical stereotypes about people who stutter being weak, shy, nervous, etc.

It follows, in Ken's view, that the best way to change public attitudes may be for non-stutterers to have personal contact with people who stutter. We can increase such contacts through telling our stories wherever we can -- to family members, school classmates, newsletter or newspaper readers, community organizations, places of worship, TV, radio, the Internet, and books. We have all been working on telling our stories in this way. It's a great thing for us to do.

Ken's recent book about stuttering offers a format that might be followed for putting together such stories, to make them more interesting to read than they otherwise might be. The book is:

Kenneth O. St. Louis (2001). Living with Stuttering: Stories, Basics, Resources, and Hope. Populore: Morgantown, West Virginia.

I have been interested to read stories by people who stutter, from a number of countries that are not yet members of ISA, in recent ISA newsletters. I believe it would be very valuable to have even more such stories, from even more countries, in future issues of One Voice, the ISA newsletter, which can be accessed at the CAPS web site http://www.webcon.net/~caps/ and the ISA web site http://www.stutterisa.org/

I also believe it would be a great idea for us to encourage individuals and groups everywhere to use newspapers, radio, and television to (a) share their stories, and (b) share information about what they think non-stutterers should "do" (however we wish to define what to “do”) when speaking with a person who stutters. Ken's suggestions may also have relevance for those of us who are involved with ISA efforts to educate the public (e.g., through International Stuttering Awareness Day event on or about October 22 of each year) about stuttering.

I would add that presentations by both Ken St. Louis and Thomas Klassen are featured on this ISAD online conference.


Last changed: September 12, 2005