International Stuttering Awareness Day: ISAD From Conception to Present Day

About the presenter: Michael Sugarman was co-founder of the National Stuttering Project (NSP) in 1977. He became the Executive Director of NSP 1978 -1981 and again in 1995 -1997. Published numerous articles on self help in academic journals and other publications. Recently, named to the Stutterers Hall of Fame. Currently, Chair of International Fluency Association's Suuport Group and Consumer Affairs Committee.

International Stuttering Awareness Day

ISAD from conception to present day

by Michael Sugarman
from California, USA

I have always seen the stuttering self help movement as part of a larger civil rights struggle. But like any struggle, it takes ideas and dedication of those of us who care, to change the way that people who stutter are viewed by themselves and the general public. Individuals, acting together, have an impact even if we don't see it right away. There is a book that I read quite some time ago entitled Chaos, Making of a New Science, 1988 and one quote stays with me. It says:

The butterfly effect is the notion that flapping of a butterfly's wing today in Peking can transform storm systems next month in New York

ISAD and IYCWS are valuable and historic efforts to transform personal and societal systems world wide for people living with stuttering.

I started stuttering when I started talking. I have lots of stories about the humiliation and struggles I experienced as a child which I am going to skip. One thing I do know is that if I did not stutter I would not have had the strength and courage that I have today. I have had the opportunity to connect with a wonderful community of people and the opportunity to witness how far we have come and to be a part of that change.

ISAD was conceived by a joint effort of people living with stuttering and professionals specializing in stuttering. The International Stuttering Association (ISA) developed a "wish list" at their conference in Linkogping, Sweden in 1995 which included an International Stuttering Awareness Day. At the 1997 International Fluency Association (IFA) conference in San Francisco, California, Friday, August 22nd was designated as "consumer day", a day set aside for professionals to learn from those who stutter and to recognize the alliance between professionals and consumers ( Kuster, J. "Reaching Out, And Around the World" keynote speech, European League of Stuttering Associations, March '99). At the closing ceremony I remarked that there should be an international day for stuttering awareness to elevate the need to examine stuttering on a global level.

In 1998, October 22nd was designated as International Stuttering Awareness Day by European League of Stuttering Associations, International Fluency Association and International Stuttering Association. ISAD provides an opportunity for building a world community that is more humane and compassionate for millions of people living with stuttering. For many, people who stutter daily verbal communications are a constant struggle. For many, verbal communication does not open doors but closes them for interpersonal, academic and professional development and fulfillment. Despite advances by clinicians and researchers many people around the world who stutter and parents of children who stutter do not have access to the services and support they desire.

The purpose of ISAD is: to change public attitudes and eliminate societal discrimination toward people who stutter; to promote the self-esteem and opportunities of people who stutter to reach goals and aspirations; and to build a community and provide opportunity to exchange ideas and strengthen the relationship among researchers, people who stutter, clinicians and parents of children who stutter.

ISAD continues to grow with more people joining in to spread its message. Some of the wonderful events that have occurred over the years include:

• The ISAD Online conference coordinated by Judy Kuster which was initiated to educate and build a world wide community of professionals, parents and people who stutter via the internet to discuss issues and research papers on stuttering.
• In Argentina, the Argentina Stuttering Association activities included translating the ISAD proclamation, making and distributing ISAD posters for children and adults and hosting a convention on October 22.
• In Israel, AMBI, the Israeli stuttering association held its first conference in Tel Aviv on October 22. AMBI is now six years old.
• In Brazil, the Communication and Disorders Dept. - Sao Paulo University organized a seminar for students in speech pathology, professionals and academic people who included many speakers and a video entitled "Stutterer's Personal Point of View."
• In Korea, Moonja Shin's speech clinic hosted a meeting of people who stutter and professionals. Ms. Shin displayed a banner along a building proclaiming ISAD. Also, the Bill of Rights and Responsibilities of People who Stutter was discussed.
• National stuttering associations around the world had press releases about stuttering for ISAD.
• In the United States, Friends sponsored a workshop "Working together: Families, Professionals and Friends for children, adults, families and clinicians."
• ISAD posters designs coordinated by Gregg Benedict have been distributed by Amy Johnson to the stuttering community energizing ISAD around the world.
• In Canada, CAPS and NSA co-hosted a one day symposium on stuttering for ISAD.
• In India, the Swar Sudhar Society initiated ISAD celebration that saw parents and children sharing their views and experience.
• Organized walks by people who stutter around cities such London, England and Seoul, So. Korea for ISAD.
• Proclamations declaring October 22nd as International Stuttering Awareness Day in communities such as Pittsburg, PA. and Buenos Aires, Argentina.
• Around the world, children have presented on ISAD and stuttering to their classes. .

Those are some of the amazing events which communicated our stories about stuttering to others and invited dialogue, participation and change. For a list of events from 1998 to present go to www.stutteringhomepage.com and click ISAD online conference. Then search for ISAD events and click on it.

International Year 2004 Children who Stutter

Now I am going to turn to today ... 2004 was designated by the IFA, ISA and ELSA as the International Year 2004 Children who Stutter.

As a child who stuttered, I did not know anyone else -- peer or adult -- who stuttered. I felt alone, embarrassed. There was no one I could relate to. I was not alone in this regard. Most people living with stuttering that I talked to felt the same way. As adults who stutter, there are many of us who want to end the isolation associated with stuttering and give back to the community. To reach out to help a child who stutters.

In 1996, the National Stuttering Project now known as NSA renewed the spirit of the stuttering community by initiating a "Year of the Child who Stutters 1996." Ten workshops throughout the United States brought together over 600 parents, children and teens who stutter and leading speech language pathologists. The NSA produced a book "Organizing a Workshop." The handbook can be found here: Organizing Your Workshop.

The Challenge: More than a third of children who stutter do not outgrow it. Today, speech pathologists can identify which children are at risk for chronic stuttering and help most of them---if therapy begins at an early age. Yet many teachers, counselors and pediatricians may advise parents to defer speech therapy until it's too late to prevent chronic life long stuttering. What causes Stuttering: There's no single cause. Stuttering is influenced by psychological factors but is not an emotional problem or nervous disorder. It's not the fault of parents or child. Current research suggests a connection between stuttering and neurological coordination of the speech mechanism.

What is Stuttering: It's a complex set of behaviors that interfere with normal fluent speech. People who stutter may repeat syllables or "block" when they're trying to get a word out. Interrupted speech may be accompanied by eye rolling, blinking, head jerks or other associated behaviors. There are as many different patterns of behavior as there are people who stutter.

The campaign: the IFA, ISA, and ELSA's International Year 2004 Children who Stutters initiative seeks to inform parents, teachers and other professionals about the need for early intervention and effective treatment of childhood stuttering and to change how children who stutter are viewed by themselves and others.

• Launched International Year 2004 Children who Stutters at ELSA conference in Strasbourg, France, Summer '03 organized by ELSA and the AVB where raising awareness of stuttering within the framework of the European Year of People with Disabilities 2003 was discussed. Distributed IYCWS and ISAD posters and buttons to participants from 22 countries representing stuttering associations.
• The British Stammering Association on October 22nd, 2003 launched a CD Rom on stuttering to be sent to every school in Britain. Also, BSA launched a- "When the words won't come" -- a unique collection of poems, stories and drawings about how it feels to stammer.
• Korea celebrated its sixth annual ISAD on November 8, 2003 at EWHA Women's University. One hundred and sixty clinicians, students, and parents attended "Stuttering Children's Therapy Workshop." The program was as follows: Ms. EJ Lee presented characteristics and evaluation of stuttering children. Dr. MJ Shin presented on parent education program. JW Shin and JH Park talked about parent-child interactions. A panel discussion followed by KA Park, KJ Lee, JH Park, HJ Cheon and JW Byan on two clinical studies and research findings on children's stuttering. This was followed by Professor HS Shim from Ewha Woman's University commentary. The third part "Walking Together" all participants had the opportunity to converse with one another and share their experiences in a relaxed atmosphere on (Love, Love interview). The day's activities concluded with a recital by all present of ten statements on stuttering and the Bill of Rights and Responsibilities for those who Stutter.
• The ISA released a CD ROM at the 2004 World Congress for People who Stutter in Perth, Australia Feb. '04 on teasing and bullying to national stuttering associations to distribute to teachers around the world. Around 350 delegates participated from all around the world. The Bill of Rights and Responsibilities for People who Stutter poster and brochure and IYCWS poster was available to participants.
• 4,000 IYCWS and ISAD buttons were distributed to national stuttering associations around the world.
• 2,500 IYCWS posters were distributed to national stuttering associations around the world.
• Initiated discussion of an international group for parents of children and young adults living with stuttering.
• AMBI convention in Jerusalem, Israel was held March, '04. Dr. Sara Melechson, head of Communication Dept. of Hadassah Academic Institute presented the Bill of Rights and Responsibilities for People who Stutter to 60 participants.
• April '04 IYCWS Workshop in Nepal: Nepal Stutters' Association conducted a one day people awareness workshop in occasion of IYCWS '04 on the theme "IYCWS Year 2004" on 1st April '04 at Western Regional Hospital, Pokhara. The program was held with an important Chief guest Mrs. Hanne Tranberg, representative of DSI - Denmark. Other guests were Mr. Bent Lassen (rep. of DSI-Denmark and Mrs. Renu Lohani (Coordinator of DSI-Nepal). 75 people participated in the program. The program was held on chair of President Mr. Indra Lal Shrestha. Two papers were presented. One paper was presented by Mr. Kabiraj Khanal (Speech Pathologist & Audiologist) about speech therapy for stutterers of different ages and the second paper was presented by Mrs. Amala Amatya member of NSA about the introduction of Nepal Stutters' Association. Nepal Stuttering Association coordinated efforts with District Education Office to mail a pamphlet on the workshop to every school in the district for children/youths who stutter to attend.
• Upland, California held a workshop for Youths who Stutter and their Families April, '04. Sponsored by California Association of Speech and Language Association, District 10. The Bill of Rights and Responsibilities for People who Stutter poster and brochure and IYCWS poster was available to participants.
• Pasadena, California held a workshop for Children who Stutter and their Families May, '04. Gail Wilson- Lew coordinated the activities. The Bill of Rights and Responsibilities for People who Stutter poster and brochure and IYCWS poster was available to participants.
• Plans are underway for the First African Stuttering Conference to be held in Cameroon October '05. The Bill of Rights and Responsibilities for People who Stutter poster and brochure was mailed to Cameroon to distribute to conference participants.
• Discussion of a project initiated by International Stuttering Association to help support developing countries with speech therapy specializing in stuttering called "International Speech Project- Stuttering". Professionals who specialize in stuttering and people living with stuttering with experience in self help groups will travel to developing countries to provide valuable information on treatment and self help models.
• The National Stuttering Association in Baltimore, Maryland, USA June '04, Bill of Rights and Responsibilities for People who Stutter poster and brochure and IYCWS materials were made available to 500 conference participants.
• Italy: An excursion to Modena was planned by the Italian National Association "Libera la parola" July, '04. The program was to see the sights of the city and provide a pleasant opportunity to exchange experiences having to do with stuttering- 1) being together; 2) playing games concerning stuttering or not and 3) having fun.
• Hungary: On its 10th birthday the Foundation for Stutterers (Budapest) had requested "stone donations" of its supporters and well-wishers. The stones submitted by July 31st will be put on display in September '04. The senders of the finest pieces will get a prize on ISAD. There will be an auction, a fair and a gala programme when prizes are awarded. The venue will be at the International Business School 16th of October '04.
• This year's campaign is to help speech language pathologists to have a child to speak to his or her class on ISAD, IYCWS and stuttering.
• Friends Conference was held July '04. The city of San Mateo declared Friends Stuttering Awareness Day, July 23rd, '04. The Bill of Rights and Responsibilities for People who Stutter poster and brochure and IYCWS poster and buttons were made available to 250 + participants.
• On Saturday, April 17th, '04 ACB in Burkina Faso (West Africa) organized a workshop with teachers. The workshop was the first one of a series of workshops within both IYCWS and a project: children with speech disorder support project. 56 teachers attended from elementary and kindergarten schools. The workshop aim was to explain what stuttering is, what to do with a child who stutters in the classroom. The program consisted of two presentations: Roseline GIndre /Zongo a French slp and Dr. Moussa spoke about what teachers can do to help children who stutter in the classroom. Also, a parent of a child who stutters presented his testimony.
• The 10th British Stammering Association conference was held in Stirling, Scotland, 3rd - 5th September '04. Lee Reeves from NSA will be a keynote speaker. IYCWS and ISAD materials were made available to anticipated 180 conference participants.
• Nordic seminar which consists of participants from Iceland, Norway, Denmark, Sweden, Finland and Faso was held in Iceland 10th through to 14th September '04. IYCWS and ISAD were discussed.
• Bundesvereinigung Stotterer Selbsthilfe (German Stuttering Association) will be celebrating its 25th anniversary (BVSS) Oct. 7 -10th, '04. 220 conference participants are anticipated to attend.
• ISAD in Czech Republic will be on 22nd October 2004 in the boardroom of Regional board of South Moravia district. Invites will be mailed to all people who stutter who were in treatment with OS Logo. The Bill of Rights and Responsibilities for People who Stutter brochure and poster and IYCWS poster and buttons were mailed to Czech Republic.
• (WSSE) is a student club at the university of Witwatersrand will be working closely with Speak Easy South Africa in launching the first ISAD on Friday 22 Oct. 2004 at WITS University Johannesburg. One of the speakers will be deputy vice chancellor. The local television plans to cover the event.
• Mailed IYCWS poster and button and Bill of Rights and Responsibilities for People who Stutter poster and brochure to twenty five slp's in the United States.
• Will advertise the online conference via internet.
• New Jersey, USA Dept. of Education asked if they can refer to Bill of Rights and Responsibilities for People who Stutter as a technical assistance document for school speech language specialists.
• 1,200 Bill of Rights and Responsibilities for People who Stutter brochures disseminated to Canadians.
• This online conference is dedicated to IYCWS 2004.
• List your IYCWS on the online conference event page.
• To celebrate IYCWS we would like to invite all children who stutter to help create a mosaic of images and metaphors they use to describe stuttering, which will help adults and other children understand what it is like to stutter. This mosaic was inspired by "Stutter House" created by Sander, a 10 year old from Belgium to symbolize his stuttering. Sander used Lego blocks. All children are invited to send their ideas and images, either digitally to (Judith.kuster@mnsu.edu) or mail to J. Kuster, Communication Disorders, 103 Armstrong, MSU, and Mankato, MN 56001, USA. Their work will be displayed as an online exhibition on this year's 2004 ISAD/IYCWS online conference.
• A first grader completed his class presentation on stuttering. His parents were able to go as well. It was a great success. He demonstrated smooth speech, bumpy speech and stretchy speech. The class asked questions about stuttering and he talked about famous people who stuttered. His parents were amazed at how calm he was speaking in front of an audience. He distributed 20 IYCWS and ISAD buttons to his classmates (Nov. '03).
• Bulgarian Stuttering Association (SIZ) initiated different activities during the first two months of 2004 in relation to IYCWS. SIZ started a contest for paintings, poems, short stories, essays focused on stuttering. Presented the movie "To Speak in a School", inviting the media. SIZ plans to organize and camp for stuttering children as well as to create leaflets and posters for IYCWS. SIZ plans to publish a book at the end of the year.

The purpose of IYCWS is to carry out our mission -- to connect with others who stutter around the world. I would urge you to keep flapping your butterfly wings -- join with other members of your community to get involved. Sponsor a workshop, talk at your local school, or post the Bill of Rights and Responsibility of People who Stutter poster up at your speech therapist office or room. In closing, all of us, from different countries and cultures use different words to describe stuttering -- "stammering" as the British call it, "begaiment" as the French call it, "amalimi" as the Zulu call it, "uu uus"as the Hawaiians call it or "yutamten" as the Arabs call it or 'tid aug" as the Thai call it. But whatever word we use, stuttering is a unifying experience that brings us together from all parts of the world. It is that common bond that we can use to fight ignorance and discrimination and replace it with a storm of acceptance, civil rights and self determination.

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August 2004