This is a threaded discussion page for the International Stuttering Awareness Day Online Conference paper, Consumer Self-Help and Professional Associations by Charlie Diggs. Other consumer groups From: Judy Kuster Date: 10/6/98 Time: 5:23:12 PM Remote Name: 134.29.30.79 Comments Thank you for your informative article! Besides the National Stuttering Project, what other national consumer groups are active with ASHA? Is there any networking among the various consumer groups besides the opportunity available every other year at the consumer dialogues? Re: Other consumer groups From: Charlie Diggs Date: 10/14/98 Time: 3:42:04 PM Remote Name: 165.117.17.251 Comments Besides the National Stuttering Project, ASHA has worked with the Speak Easy Foundation and the National Council on Stuttering. They have regularly attended ASHA Consumer Dialogues, and ASHA has made presentations at their annual meetings. Many people who stutter belong to more than one self-help group, and the leadership of all three groups frequently attend annual meetings of the other groups consumer education From: chuck goldman Date: 10/12/98 Time: 9:01:11 AM Remote Name: 152.163.194.207 Comments In dealing with one of the oldest afflictions affecting humankind one might think that public education and professional-consumer alliances would be more firmly established? It may be the unpredictability, intermittentness, and uncontrollable nature of stuttering that frightens both consumer and professional from getting closer to the disorder. Add to this the complexity of the problem and the temptation to try to categorize and/or explain it in some simplistic way and you can see the educational challenge. It partially reminds me of the public education challenge posed by the term "dyslexia". For too many years the simplistic definition of seeing letters and words backward reigned. Re: consumer education From: Charlie Diggs Date: 10/14/98 Time: 3:49:11 PM Remote Name: 165.117.17.251 Comments I agree that stuttering is not one disability, but rather a family of disabilities, with similarities as well as differences. Unfortunately, one of the similarities is a public stereotype of people who stutter, and stereotypes die hard. Conferences like this one can go a long way in continuing to change public perceptions. Re: consumer education From: Les Anderson Date: 10/17/98 Time: 2:43:12 PM Remote Name: 209.167.123.228 Comments I think we all can appreciate that it is usually the specific group who is suffering the handicap who gets word to the public. Stuttering is unique in that to get the word out communication is involved and how many stutterers will stand on a public soapbox and shout their cause. I have been asked many times why my family does not know more about stuttering than they do. My usual response is, "frustration compounds stuttering and when I try to explain my feelings or experiences I get frustrated and the more I get frustrated the worse my stutter gets, so how do I let someone know how I feel"? We are somewhat caught in a spinning wheel with our own frustrations. Slowly however, we are getting the word out about stuttering and those who suffer with stuttering. It is the national, state, provincial and local support associations that must work on educating the public and bring attention to our cause. Also, those stutterers who have gone through a successful therapy program and have gained some proficiency in their fluency must work with the public. We are slowly coming out of our closet and approaching the public. It is also conferences like this that is helping us to learn how this can be done. Les Anderson Re: consumer education From: Charlie Diggs Date: 10/21/98 Time: 9:30:41 AM Remote Name: 165.117.17.251 Comments Les, you are right. Change takes time and occurs one step (one person?) at a time' Charlie Re: consumer education From: Ira Zimmerman Date: 10/18/98 Time: 12:36:57 PM Remote Name: 209.156.100.29 Comments Unintentionally, sometimes the fault for continuing a false stereotype of persons who stutter comes from organizations meant to help stutterers. Most of their Public Service Announcements gives the impression that stuttering can disappear with treatment. While this may be true for some, it is not true for all. Why don't they focus on the accomplishments of those who have succeeded despite continuing to have a noticeable stutter? Why don't the educate the public in their Public Service Announcments about tolerance and patience toward people who stutter or just giving them a chance to prove themselves? MEDIA TIP: I understand that ABC Nightline is working on a segment on stuttering that will focus on the three week cure for stuttering at Hollins. Is it no wonder that the public has little patience for stutterers when they think with a little bit of therapy they won't have to stutter? Re: consumer education From: Les Anderson Date: 10/19/98 Time: 7:50:26 PM Remote Name: 209.167.123.227 Comments Ira, I couldn't agree more with your comments. The stutterer's self help groups still have a long way to go and are still in the learning curve. And yes, we stutterers can be our own worst enemies. Even those who stutter still beleive myths and fallacies about themselves and their stutter that have been around for hundreds of years. We not only have to educate the public, we have to educate ourselves about our own affliction. Another point that we have to remember, the knowledge and viable treatment of stuttering, when we consider the human speech time span, is still in its infancy. The researchers, SLPs and stutterers a like still have an awfully big hill to climb. Les Anderson Re: consumer education From: Charlie Diggs Date: 10/21/98 Time: 9:35:28 AM Remote Name: 165.117.17.251 Comments ASHA, in its media work, certainly tries to present to reporters the viewpoint that there is no miracle cure. As you know, reporters do not always listen. Perhaps that is their disability. Charlie Re: consumer education From: Les Anderson Date: 10/22/98 Time: 6:32:44 PM Remote Name: 209.167.123.229 Comments I think part of the problem with reporters, and the general public as well, have already made up their own conclusions about stuttering those who stutter. As I stated before, it is going to be a long road; however, most pioneers in any field have to over come many barriers of doubt. Untrained Stutterers Treating Stutterers From: Ira Zimmerman Date: 10/12/98 Time: 4:32:12 PM Remote Name: 209.156.100.10 Comments Last year, the NBC-TV Dateline news magazine program gave wide publicity to a self-help program for stutterers called "The David McGuire Program". This treatment program is run by a stutterer who has no academic training or degrees in speech language pathology. While ASHA responded quickly to a recent letter printed in the Ann Landers column on an old treatment for stuttering, why did ASHA remain silent after the NBC Dateline broadcast of the McGuire treatment program. Is there something to Costal Diaphragm training that can help stutterers? What do you think of self-help groups taking stuttering treatment matters in their own hands and away from traditional speech therapy? Re: Untrained Stutterers Treating Stutterers From: Charlie Diggs Date: 10/14/98 Time: 4:13:57 PM Remote Name: 207.86.138.200 Comments It is the position of ASHA that the needs of people who stutter are best met by qualified ASHA-certified speech-language pathologists. Some people with problematic medical conditions choose to seek non-traditional, non-medical options of treatment. Consumers, ultimately responsible for their own health decisions, have this choice. I am sure all who read this reply can think of at least one individual story that claims success with some non-traditional approach. However, such a success does not mean that that approach should be tried by everyone. As for Costal Diaphragm breathing, I am unaware of scientific evidence that supports the efficacy (short-term or long-term) of such an approach. Thank you for your acknowledgement of ASHA's response to Ann Landers. I know that you are also aware of ASHA's John Hancock campaign referred to in my article and ASHA's many other media efforts on behalf of people who stutter. Stuttering and SLP From: Amy Wendelboe-Hanson and Beth Hebert Date: 10/18/98 Time: 10:40:00 PM Remote Name: 134.29.22.39 Comments I feel that forums such as this and the International Stuttering Awareness Day are important steps in educating the public, professionals, and students in SLP alike. I am in a graduate seminar on stuttering currently, and completed an undergrad class in stuttering last term. I feel that if I had taken only one or only had it mentioned in some overviewed form, neither I nor my future fluency clients would have benefitted. Through these past few months, I have gotten to know the thoughts, dreams, feelings, and fears of PWS and I feel confident in being able to determine the right path of therapy for each individual client. I feel every SLP student should have this opportunity to learn about stuttering, in every program in the nation (and beyond). Is there any new developments in establishment of a specialized degree in stuttering? Re: Stuttering and SLP From: Charlie Diggs Date: 10/19/98 Time: 11:36:29 AM Remote Name: 207.86.138.200 Comments Walt Manning's paper for this conference (Is there anything new in stuttering or are you still doing the same old things?) talks about specialty recognition as do the follow-up discussion from Judy Kuster and Andy Floyd (see re: specialty recognition) Charlie