A crucial factor From: Ed Feuer Date: 10/4/99 Time: 1:54:52 AM Remote Name: 216.81.25.93 Comments A crucial factor, about which I see no reference in the article, is the effect of attitudes embedded in the language. In casual useage, the terms "stuttering" and "stammering" always mean some variant of shame, failure or incompetence. Some recent examples in Associated Press stories were reference to Dan Quayle's "stuttering presidential campaign" or a foe of Senator John McCain saying that he was "stuttering and stammering on the issue of abortion." The problem arises when people who know nothing about real stuttering impose those attributes on people who really do stutter. I propose that people who stutter must come to own the terms stuttering and stammering. Language useage does change. The homosexual community now owns the word gay. That is a comparatively recent development. Advocacy of our ownership of stuttering and stammering could be part of general public awareness campaigns. English and other languages can find other terms Ñ let there be talk of stumbling presidential campaigns or that a candidate is waffling on abortion. Ñ Ed Feuer edfeuer@escape.ca Re: A crucial factor From: J. Scott Yaruss Date: 10/4/99 Time: 8:54:37 AM Remote Name: 128.147.90.204 Comments True, the word "stutter" is often used to describe something that is halting or not smooth. I'm not sure exactly what the problem is with this. When people say "the stuttering campaign" I doubt if they're trying to tap into all of the emotional anguish people who stutter experience. They mean, halting, unsure, etc. Here's an alternate perspective, rather than trying to take the term "stuttering" as meaning ONLY the types of disfluencies produced by people who stutter or the disorder exhibited by people who stutter, maybe there would be some benefit in opening the term up to everybody. This would help to REDUCE the shame people who stutter experience regarding this word, and make it a normal, everyday part of the vocabulary... By reserving the word, you To use Ed's example, many people only use the term "gay" when they specifically mean to communicate their negative feelings, not simply as a descriptive term. The gay community owns the word, but that does not change the way the word is used on the playground... FWIW, JSY A crucial factor From: Ed Feuer Date: 10/5/99 Time: 12:59:12 PM Remote Name: 216.81.6.168 Comments Scott, You said: "I doubt if they're trying to tap into all of the emotional anguish people who stutter experience. They mean, halting, unsure, etc." That's because they know little about that anguish. And rather than "halting" or "unsure", the casual conversational meaning usually implies failure, incompetence, shame. It serves no good purpose to pretend otherwise. Unfair discrimination in employment is a key example of where the difficulties arise Ñ such as when a personnel department staffer meets a job applicant who really does stutter. The only point of reference about stuttering is the casual, conversational useage Ñ leading in turn to fixed notions about what PWS *CAN'T* do. Burying our heads in the sand is counter-productive. As I've said, it's time to start claim a monopoly over "stuttering" and "stammering." Anyone who truly wants to increase public knowledge about stuttering must face this challenge. Ñ Ed Feuer edfeuer@escape.ca Re: A crucial factor From: Ken St. Louis Date: 10/7/99 Time: 10:34:50 AM Remote Name: 157.182.15.69 Comments Hello Ed, I don't mean to dodge your question (and reply to Scott), but let me reiterate that we plan to develop a questionnaire that hopefully will assess public opinions, beliefs, and attitudes toward stuttering. We have no plans to change those beliefs in this project. Of course, we support all the efforts that are ongoing which attempt to reduce some of the societal atitudinal obstacles which those who stutter must overcome if they are to reach their full potentials. But, among other things, we hope to offer one well-designed instrument that might be of use in measuring the effectiveness of such efforts. Similarly, we have no plans to try to change linguistic usage, but we do want to measure some of the nuances of its effects. And as we later grapple with the vagaries of translating such words as "stuttering," "person who stutters," etc. to other languages, I am certain that we will uncover all sorts of interesting and conflicting emotional connotations. Stay tuned for the next few years.... Ken cultural attitudes From: LaVonne Reed Date: 10/7/99 Time: 2:19:46 PM Remote Name: 134.29.22.53 Comments It is exciting to hear of the development of the CASPA as a step towards the "International Project on Attitudes Toward Stuttering." It is wonderful that when the CASPA is completed it will be a tool that others can use to assess public attitudes toward stuttering. You wrote, "accumulating evidence indicates that most nonstuttering individuals in Western society hold negative beliefs and attitudes about those who stutter." My question is, are there any countries or cultures that you are aware of that hold the opposite belief? Where the people have a positive attitude toward stuttering and may even regard stuttering as a gift or a blessing? Re: cultural attitudes From: Ken St. Louis Date: 10/8/99 Time: 2:39:00 PM Remote Name: 157.182.15.69 Comments Hi LaVonne, Thanks for the kind words about our project. We, too, are excited about the possibilities of being able to better understand public attitudes toward stuttering. Let me say that the "CASPA" has already been renamed--we just aren't quite sure what the new name will be. But the idea has not changed. I am not aware of any society where stuttering is regarded as a blessing. There are anecdotal accounts that suggest that some groups or subcultures do not regard stuttering as negatively as we seem to in North America at least. One of my colleagues in Denmark suggested to me that it is his opinion that stuttering is less of a concern in the Scandenavian countries than it is in some other parts of Europe or the US. Once we have the instrument available, it should be possible to begin to answer the intriguing question you pose. I am curious about your orientation to public attitudes. Do you have any reason to believe that some cultures or subcultures might have clearly positive views of stuttering? If you feel inclined, let's keep the dialogue going. Ken attitudes From: Michael Sugarman Date: 10/11/99 Time: 10:48:07 PM Remote Name: 205.188.198.21 Comments Thank you for initiating this exciting project. In 1978 NSA conducted a study on the perceived employment opportunities for people living with mild, moderate or severe stutter. College students saw people living with a severe stutter restricted to positions such as a book-keeper. People living with a mild or moderate stutter were able to seek most or all speaking positions such as lawyer, professor, or medical doctor. Are u planning to ask folks about their attitudes toward people living with mild, moderate or severe stutter? kindly, michael Re: attitudes From: Ken St. Louis Date: 10/12/99 Time: 9:18:31 AM Remote Name: 157.182.15.69 Comments Hi Michael, You raise a good point about severity. We have not yet finalized the first prototype of the instrument (which will be renamed). We thought and debated about the issue you brought up. We also carefully considered the effects of age, sex, marital status, etc. of persons who stutter and how those might influence public attitudes. Currently, we do not have specific questions differentially asking about severity because we believed we would need to define what we mean by example and thereby potentially bias the results, especially since we hypothesize that many--if not most--members of the public will have very little knowledge of stuttering (though we may be wrong). Also we must keep the length and complexity of the questionnaire to a manageable level if it is to be widely used. We have decided to look more specifically at global attitudes toward stuttering inb comparison to a number of other conditions, both positive and negative as a basic research strategy. I will bring up your idea with the Task Force and see what they say. It is a very good point! I would be very interest in the NSA questionnaire and your results. You and I will be meeting at the ASHA Convention next month, so perhaps we could discuss it there. Thanks for the kind words and valuable feedback. Ken General Comments From: Jeff Shames Date: 10/16/99 Time: 10:31:33 PM Remote Name: 205.188.195.22 Comments I like the basic format of the survey, and wish you well in your work. I agree with Michael that it is useful to examine how the severity of the stuttering affects attitudes about stuttering. Of course, the attitude of the the stutterer him/herself is also very important. But this does complicate matters beyond the scope of this survey. I wonder if societies which have a strict code of behavior (Japan comes to mind) would have more severe attitudes toward pws. Re: General Comments From: Ken St. Louis Date: 10/18/99 Time: 8:36:33 AM Remote Name: 157.182.15.69 Comments Hi Jeff, Thanks for the input. It's nice to see that this on-line conference is generating so much discussion. Certainly the attitudes of those who stutter are very important. We will be trying to measure the attitudes of the general public, which will, of course, include a few stutterers. That is our over-riding purpose! In addition to that, we probably will obtain questionnaire data from stuttering self-help groups and others. This way, we can get a sense of whether or not the attitudes of the public are mirrored by those who stutter. Lots of folks who were trained in the diagnosogenic influence of Wendell Johnson would agree that societies that have high expectations for behavior of children, high standards of speech fluency, and relatively more rigid rules in general would likely have more stutterers. Of course, we won't be doing a prevalence study with the IPATS initiative. If we find that some societies have more negative attitudes toward stuttering than others, we will have to wait for *good* epidemiological data to determine whether or not attitudes are correlated with prevalence or incidence. (Take a look at Bobbie Lubker's paper in the conference.) Thanks again for your comments and question. Ken