International Stuttering Awareness Day: Consumers and Professionals Working Together

About the presenter: Judy Kuster, M.S. in speech-language pathology and M.S. in counseling, is a professor of Communication Disorders at Minnesota State University, Mankato. She is well-published in Internet resources and has presented at state, national and international conferences. She is the webmaster of the Stuttering Home Page as well as the coordinator of this online conference. She holds Specialty Recognition in Stuttering and is a member of the Division #4 Fluency and Fluency Disorders. She is a member of the National Stuttering Association, the International Fluency Association and the International Stuttering Association and was recently named to the National Stuttering Association Hall of Fame.

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. Named to the Stutterers Hall of Fame. Currently, Chair of International Fluency Association's Support Group and Consumer Affairs Committee. He writes: Thirty-two years I have enjoyed the company with adults/teens and children who stutter. I have had many memorable moments - one was to witness integration of children/teens who stutter and parents at a National Stuttering Association conference during 1990's. Awesome!

International Stuttering Awareness Day: Consumers and Professionals Working Together

by Judith Kuster, Minnesota, USA and Michael Sugarman, California, USA

Introduction

Different countries and cultures use different words to describe stuttering -- "Stammering" as the British call it, "begainment" as the French call it, the Zulu call it "amalimi", Hawaiians use "uu uus," it is called "yutamten" in the Arabic community and "Tid Aug" in Thailand. Whatever the word we use, stuttering is a unifying experience that brings together people from all parts of the world.

The impetus for International Stuttering Awareness Day (ISAD) originated in the "consumer community" with support from the "professional community." 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 International Fluency Association (IFA) conference in San Francisco, CA, USA, in August 1997, Friday was designated as "consumer day," a day set aside for the professional members of the IFA to learn from those who stutter and to recognize the alliance of professionals and consumers. On that Friday another step was taken when it was again suggested that there should be an international day for stuttering awareness to recognize the alliance of consumers and professionals in helping people who stutter. By May 1998 the IFA Board of Directors had approved an International Stuttering Awareness Day and gave Michael Sugarman responsibility for it. In July 1998, the ISA designated Sugarman as chair of the ISAD committee, and he became the primary organizer of International Stuttering Awareness Day. The date was established as October 22, 1998.

The stated purpose of International Stuttering Awareness Day is "to promote awareness and understanding and to show appreciation for people who stutter and the speech language professionals who work with them." When one considers the accomplishments of the first International Stuttering Awareness Day, pulled together in about one year's time, it is amazing to witness the dedication, creativity, and determination of the world-wide community of people affected by stuttering either personally and/or professionally working to accomplish that stated purpose.

The first ISAD was successfully launched in 1998. Since then, professionals and consumers around the world have worked together to bring information and support to persons who stutter, their families, and the professionals who serve them.

A special 5 minute slide presentation, documenting several ISAD events as well as other International Stuttering events was created for the 2006 International Fluency Association Conference.

You are invited to view this presentation here:

Summaries of Additional Sample ISAD Events

For over a decade the stuttering community has joined together to educate persons living with stuttering, their families and professionals and to change the attitudes of the general public toward stuttering.

World wide International Stuttering Awareness Day (ISAD), October 22nd activities are held from Seoul, South Korea to Beijing, China, from London, England to Jerusalem, Israel, and from Doula, Cameroon to Oakland, California to look how to change the personal effects of stuttering and alleviate ignorance about and discrimination against PWS.

Successful events have taken place throughout the world, including important advances in supporting people who stutter in many countries where there had previously been no therapy or appropriate information about stuttering. Below are several examples of ISAD events.

1998 ISAD events held in Canada, Belgium, Brazil, Argentina, Israel, South Africa, Korea, UK, and US are documented online. Individuals and organizations around the world helped spread the word about the new ISAD. Several examples:

ISAD posters were sent to Canada, Belgium, Argentina, Austria, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Israel, Italy, Japan, Netherlands, New Zealand, Norway, Poland, South Africa, Sweden, UK, and US.
Individuals arranged interviews on radio and TV, wrote articles for magazines, newspapers and newsletters, and approached city administrators to declare October 22 ISAD in their communities.
The first ISAD World Demonstration was organized for 12:00 NOON on OCTOBER 22 where individuals were encouraged to turn to the person next to them and start a conversation about stuttering.

1999 ISAD events. The original announcements page for the 1999 online conference was accidentally deleted but the table of contents (http://web.archive.org/web/20010509114520/134.29.30.67/isad99announcements/) documenting events held in Belgium, South Africa, Israel, Argentina, Canada, UK, Korea, Iceland, and the U.S. can still be found online listing many events such as these:

Walk and Talk Around the World in several countries.
TV appearances, conferences and workshops

2000 ISAD events held in Venezuela, France, Canada, Belgium, Netherlands, Czech Republic, Germany, Korea, Croatia, China, Austria, Argentina, and the U.S. are documented online. In keeping with the ISAD focus on children that year, several events featured outreach for children who stutter and their parents, including these:

FRIENDS Fun & Games Day in celebration of ISAD in St. Louis and New York
Conference on stuttering and school children in Germany
Individuals visited schools and informed students about stuttering.
Parent Information Sessions in Canada

2001 ISAD events held in Israel, Canada, France, Iceland, China, India, Cameroon, Croatia, Czech Republic, and the U.S. are documented online. In four years, very exciting events were scheduled in several new participating countries including these:

In India a seminar was held in Pune and an awareness rally was held in Bangalore.
In China a Chinese language web site was launched.
In Cameroon several informational events were scheduled from October 21-22.

2002 ISAD events held in Cameroon, India, Canada, Belgium, Croatia, Uganda, Argentina, Burkina Faso, Argentina, Sweden, Israel, and the U.S. are documented online. ISAD events continued to spread information about stuttering around the world, in a variety of unique ways including these:

Local media in Croatia; Cameroon, Burkina Faso, Sweden, and West Palm Beach, Florida interviewed members of support groups about stuttering or played public service announcements.
Family potlucks and pool parties, parent information sessions and workshops for adults, distributing information packets, etc.

2003 ISAD events held in Germany, Belgian, China, Canada, Israel, Spain, Chile, Croatia, France, Korea, Czech Republic, Netherlands, Nepal, and the U.S. are listed online. Children are beginning to find ways to celebrate ISAD including these:

Reports of children who did classroom presentations. One was a first grader who demonstrated smooth speech, bumpy speech, stretchy speech with a smooth jeep, bumpy mouse and stretchy rubber band. He also answered questions about stuttering and talked about famous people who stuttered.

2004 ISAD events held in Ontario, South Africa, Cameroon, Argentina, Quebec, Israel, Croatia, Nepal, Hungary, UK, and the U.S. are documented online. In keeping with the International Year of the Child Who Stutters, several events featured outreach for and by young people who stutter, including these:

Wits Student Speak Easy, a student organization at the University of the Witwatersrand along with Speak Easy South Africa launched its first International Stuttering Awareness Day.
AMBI - Israel Stuttering Association annual convention was devoted to Children who Stutter.
The Speech Foundation of Ontario presented a day-long workshop "Stuttering and the School-Aged Child: Issues and Options."

2005 ISAD events documented online were held in Brazil, Nepal, Belgium, Korea, Spain, Cameroon, Africa, Argentina, China, Japan, UK, Croatia, Germany, Austria, Czech Republic, and the U.S. Included in the announcements is evidence that the outreach arm of ISAD is continuing to have a major impact in countries where first-time events are being organized, including these:

The International Stuttering Association, ISA, in collaboration with the Speak Clear Association of Cameroon, SCAC, organized the first African conference on stuttering in Douala Cameroon from the 6th to 8th of October 2005, with more than 120 delegates from 17 different African countries attending.
The International Speech Project-Stuttering (ISP-S) was formed to integrate speech therapy and support for the formation of support groups to developing countries in the world.
The 1st Stuttering Research and Treatment Seminar of China (SRTSC) was held from October 15-16, 2005, in Beijing hosted by the Institute for Neurological Science and Study of Beijing Normal University.
The Nepal Stutters Association conducted a two-day workshop in Katmandu for strengthening the NSA Nepal.

2006 ISAD events documented online included announcements from Israel, Brazil, Argentina, Peru, Belgium, Croatia, Spain, India, Cameroon, and the United States, including:

In Cameroon ISAD was be observed in Douala, Buea, Limbe, Kumba, Bamenda, Kumbo, Nkambe, Yaounde and Nkongsamba.
Brazil held their own online conference about the etiology of stuttering from October 16-22 as well has organizing a day-long meeting in Sao Paulo to discuss the causes of stuttering.
In Croatia, children and adults who drew nearly 50 pictures of stuttering gathered and several TV and radio events were held.
Conferences were held in Spain and Argentina

2007 ISAD events documented online included announcements about ISAD events held in Canada, Chile, Argentina, Brazil, Swedan, South Africa, Israel, Czech Republic, China, Poland, Korea, India, Cameroon, Ireland, the UK, Croatia, Germany, Norway and the United States, including:

Substantial workshops on stuttering were hosted in Spain, Canada, Argentina, Brazil, South Africa, Poland, Korea, Ireland, and Sweden.
Croatia and India hosted public viewings of the film "Unspeakable."

2008 ISAD events documented online included announcements about ISAD events held in many cities in China, Czech Republic, France, Italy, Croatia, Uruguay, South Africa, India, Brazil and the United States, including:

Special parties were held in many cities throughout China on October 22. In Shanghai an online argument/competition between people who stutter in China was held. In Beijing, and information event at the German School and Kindergarten was held.
In New York, one individual did three presentations at a middle school, reaching 300 children, educating them about stuttering
In Brazil, more than 200 people gathered for the First Brazilian Meeting of People Who Stutter.
A full-day conference was held in BRNO, Czech Republic featuring speakers from the US, Great Britain, and local professionals.

The first eleven ISAD Online Conferences

A unique ISAD event is the International Stuttering Awareness Day Online Conference organized annually by Judith Kuster. The online conferences are designed to connect consumers and professionals from around the world in a unique forum for three weeks (from October 1-22) each fall, culminating on International Stuttering Awareness Day (October 22). The papers are written in a reader-friendly style and designed to be accessible even with limited computer access. All past conferences are archived online, linked to the Stuttering Home Page (www.stutteringhomepage.com). It can be verified that the first eleven ISAD online conferences have reached people in at least 151 different nations.

The Power of Your Voice

The first ISAD online conference held from October 1-22, 1998, featured 50 people from 15 countries who wrote 37 different papers that made up the conference. During the three weeks of the conference, the entire site had 23,585 requests for information with an average of 1025 requests daily. (183,417,872 bytes were transmitted during the summary period with an average of 7,974,690 bytes transmitted daily). Those requests came from 31 different countries. Each paper was read by an average of 175 people.

Many Languages, One Voice

The second ISAD online conference held from October 1-22, 1999, saw the first "Office Hours," staffed by eight professionals, and had 3 panels, 28 invited papers and 8 poster sessions. To make it easier for people whose first language was not English, a link to a translation service (Babelfish) was added. 63 people from 19 different countries wrote 28 full-length papers, 3 panels and 8 posters representing shorter papers. During October, the entire site had 27,143 requests for information with an average of 1180 requests daily. (22,838,801 bytes were transmitted during the summary period with an average of 9,928,209 bytes transmitted daily). Those requests came from 23 different countries. Each full-length paper was read by an average of 142 people (with a range of 85 to 371 people).

Reach Out To Children Who Stutter

The third ISAD online conference held from October 1-22, 2000, featured over 65 individuals representing 13 countries who wrote 3 panel discussion papers, 8 posters, and 25 invited full-length papers. During October, the entire site had 36,951 requests for information. (451,391,435 bytes were transmitted during the summary period with an average of 18,807,976 bytes transmitted daily). Those requests came from 42 different countries. During the conference period, each paper was read by an average of 185 people.

YOU ARE NOT ALONE: Transforming Perceptions

The fourth ISAD online conference held from October 1-22, 2001, featured 62 individuals representing 16 countries who wrote 3 panel discussion papers, and 30 invited full-length papers. During the month of October the entire site had 36,495 requests for information. (251,587,000 bytes were transmitted during the summary period). Those requests came from a documented 36 different countries. Each paper was read by an average of 206 people.

Don't Let Stuttering Stop You

The fifth ISAD online conference was held from October 1-22, 2002, and featured 72 people representing 16 countries, who wrote 5 panel discussions (several shorter papers around a single topic), and 30 invited full-length papers. 42 of the presenters (58.2 percent) were people who stutter, 22 (30.5 percent) do not themselves stutter and it was not determined if the remaining 8 (11.1 percent) stutter or not. During October the entire site had 78,314 requests for information. (941,589 bytes were transmitted during the summary period). Those requests came from 51 countries that I can document. Each paper was read by an average of 291.6 people with a range of 133-545.

"INTERNATIONAL STUTTERING AWARENESS" is every day. . . We just celebrate it on October 22!"

The sixth ISAD online conference was held from October 1-22, 2003, featured 60 individuals representing 15 countries. Several professionals served as experts for the "Professor is In." The conference also consisted of 4 panel discussions (several shorter papers around a single topic), and 33 invited full-length papers. 42 of the presenters (58.3 percent) were people who stutter, 27 (37.7 percent) do not themselves stutter and it was not determined if the remaining 3 (4 percent) stutter or not. For the month of October the entire site had 86,648 requests for information. (1,403,332 bytes were transmitted during the summary period). Those requests came from 56 countries that I can document. The papers were read by a range of 215-566 people.

"International Year of the Child Who Stutters"

The seventh ISAD online conference was held from October 1-22, 2004, and featured 110 individuals representing 17 countries. Several professionals served as experts for the "Professor is In" and a new feature, the "Researcher is In," was added. The conference featured a section "Especially for Kids and Teens Who Stutter" and another section had 30 full-length "Invited Papers - Especially for the Adults and Teens." Other features added this year included access to powerpoints and several audio files. 52 of the presenters (46.8 percent) were people who stutter. 51 (46.4 percent) do not themselves stutter although several have family members who do, and it was not determined if the remaining 8 (7.2 percent) stutter or not. Statistics for the month of the conference indicate the entire site had 637,652 requests for information. (2,745,644,553 bytes were transmitted during the summary period.) I can document that people in 66 countries checked in during the three weeks of the conference. The papers were read by a range of 131-563 people.

"Community Vision for Global Action"

The eighth ISAD online conference was held from October 1-22, 2005, and featured 101 individuals representing 19 countries. Several professionals served as experts for the "Professor is In" and the "Researcher is In." The conference was divided into sections: People Who Stutter tell their own stories (16 papers), Support group activities (2 papers), Research about stuttering (7 papers), Treatment information and issues (9 papers), and Programs and Powerpoints (6 papers). Special features included powerpoints, downloadable software programs, and an audio file. Statistics for the month of the conference indicate the entire site had 571,218 requests for information. (2,724,830,591 bytes were transmitted during the summary period.) I can document that people in 75 countries checked in during the three weeks of the conference. The papers were read by an average of 385.22 people with a range of 189-644. One paper was translated into Spanish (200 hits) and Italian (149 hits) which was not included in the summary of how often a single paper was read.

"Don't Talk ABOUT us. . . Talk WITH us!"

The ninth ISAD on-line conference was held from October 1-22, 2006. The conference and featured 60 individuals representing 22 different countries. Several professionals served as experts for the 'Professor is In' and the 'Researcher is In.' The conference was divided into sections: The Experts (PWS) Speak For Themselves (10 full-length papers, interviews with 17 individuals, and reports from 13 African nations), Support group activities (2 papers), Research about stuttering (7 papers), and Stuttering: Information and Issues (12 full-length papers, 12 "clinical nuggets: treatment treasures and activities, a 5-minute QuickTime movie, and three short papers about three pioneers in stuttering). Statistics for the month of the conference indicate the entire site had 723,276 requests for information. (7,751,710,596 bytes were transmitted during the summary period with an average of 250,055,181 bytes transmitted daily.) I can document that people in 95 countries checked into the conference. The papers were read by an average of 452.12 people with a range of 244-936.

Stuttering Awareness: Global Community, Local Activity

The tenth ISAD on-line conference was held from October 1-22, 2007. The conference and featured 90 individuals representing 29 different countries. Several professionals served as experts for the 'Professor is In.' The conference was divided into sections: Research about stuttering (8 papers), The Experts (PWS) Speak For Themselves (10 full-length papers and 9 shorter papers of messages for teens about living with stuttering), a section on Internet Technologies (20 three-minute videos from individuals from 20 different nations describing self-help in their countries, a short podcast, and a skype meeting) , and Stuttering: Information and Issues (7 full-length papers, 13 "clinical nuggets: treatment treasures and activities, and two Stuttering Foundation brochures translated into 17 modern languages). Statistics for the month of the conference indicate the entire site had 612,695 requests for information. 2424680414 bytes were transmitted during the summary period with an average of 109,758,201 bytes transmitted daily.) I can document that people in 94 countries checked into the conference. The papers were read by an average of 344.73 people with a range of 161-635.

Don't Be Afraid of Stuttering

The eleventh ISAD on-line conference was held from October 1-22, 2008. The conference and featured 60 individuals representing 14 different countries. Several professionals served as experts for the 'Professor is In.' The conference was divided into sections: Stuttering: Information and Issues (17 full-length papers and 11 "clinical nuggets: treatment treasures and activities), The Experts (PWS) Speak For Themselves (8 full-length papers and 4 shorter papers addressing a signal topic), and 3 full-length submissions especially for children who stutter. Statistics for the month of the conference indicate the entire site had 597,619 requests for information. 5,669,578,343 bytes were transmitted during the summary period with an average of 182,889,624 bytes transmitted daily. I can document that people in 82 countries checked into the conference. The papers were read by an average of 488.45 people with a range of 203-1198 people.

The total "hits" for any of the conferences or individual papers is not adequately reflected in the above statistics. A person from India downloaded all of the papers and produced a single file (both .exe and .zip) which could be downloaded and read off-line for those, as is true in his country, who have expensive internet connections. The files were placed on the website and download by several people in foreign countries which means that many read papers off-line rather than returning to the conference site. Also, some ISP providers (such as AOL) "cache" a site once/day which means anyone accessing the conference through that provider is actually accessing the "cache" rather than the actual conference site, which means those "hits" are not recorded.

Conclusion

In the past eleven years, International Stuttering Awareness Days that have been celebrated in communities and countries around the world have helped raise awareness of stuttering and connected people locally with information and support. The International Stuttering Awareness Day online conferences have been instrumental in connecting people around the world, including being the impetus for some exciting research about stuttering. In the years to come, ISAD will continue to fulfill its purpose of changing public attitudes and eliminating discrimination toward people who stutter, promoting self-esteem and opportunities for people who stutter, and building a community to exchange ideas and strengthen the relationship among researchers, people who stutter, clinicians, and parents of children who stutter.

DATE SUBMITTED: September 1, 2009