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.

You can post Questions/comments about the following paper to Michael Sugarman before October 22, 2004.

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:

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 on the internet www.mnsu.edu/comdis/kuster/workshop/intro.html

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.

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.

You can post Questions/comments about the above paper to Michael Sugarman before October 22, 2004.

August 2004

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