International Stuttering Association
About the presenters: Jaan Pill is an elementary school teacher in Mississauga, Canada. He is founder of the Stuttering Association of Toronto (1988), and a co-founder of the Canadian Association for People Who Stutter (1991) and the International Stuttering Association (1995).
Benny Ravid is a software engineer. He is the chair and founder of AMBI, the Israel Stuttering Association. He is also ISA board member, head of the webmaster group of the ISA website and webmaster of AMBI website.
Stefan Hoffmann, 33, joined the self-help movement in Cologne, Germany in 1991. He became an ISA board member in 1998, dealing mainly with outreach matters in Latin America and Asia. He is currently located in Beijing, China.
Mark Irwin - is a dentist in private practice in Adelaide Australia. He is a past president of the Australian Speak Easy Association (1995 -7) and has been a board member of the ISA since 1998. He currently serves as ISA chairman.
Martine De Vloed is an employee at a company in Ghent, Belgium. She is a co-founder and the past vice chair of the Belgian Stuttering Association, vzw BEST. She is also the past vice chair of the ISA (1998-2001) and is currently an ISA board member.
Mel Hoffman: Retired. Certified Public Accountant. Formerly director of taxes at Ampex Corporation. Member of the board of directors of the National Stuttering Association from 1983-1994, serving some of these years as either secretary or treasurer. Member of the ISA management committee, 1995-1998. Member of the ISA board of directors, 1998-2001, also serving as treasurer. Continuing as ISA treasurer until about December 31, 2001.
Thomas Krall is a teacher of mathematics, sports and music at a comprehensive school. He is currently on a sabbatical. Chair of a stuttering self-help group in Duesseldorf, Germany, 1989-1991. Chair of the German stuttering > association, 1992-1993. Member of ISA management committee,1995-1998. Chair of ISA board of directors, 1998-2001.
This paper is also available in Hebrew.
International Stuttering Association
by Jaan Pill (Canada), jpill@interlog.com Benny Ravid (Israel), bravid@runbox.com Mark Irwin (Australia), mirwin@cobweb.com.au Stefan Hoffmann (China), sthoff160@gmx.net Martine De Vloed (Belgium), mart.devloed@belgacom.net Thomas Krall (Germany) ThomasKrall@compuserve.com and Mel Hoffman (California, USA) Melhoffman@aol.com
History
Founded in 1995, the International Stuttering Association (ISA) is a not-for-profit, international umbrella association made up primarily of national self-help associations for people who stutter. This association seeks to provide a means whereby the voices of people who stutter can be heard at the international level.
Representatives of several national self-help associations had talked about setting up such an organization at a meeting in San Francisco in 1992 at the Third World Congress of People Who Stutter. Previous World Congresses were held in Kyoto, Japan in 1986 and in Cologne, Germany in 1989.
Discussions among national self-help associations in 1993 and a worldwide survey in 1994 led to creation of a draft version of the ISA constitution. This constitution was refined and ratified at the first ISA membership meeting in Link�ping, Sweden in July 1995, a day before the Fourth World Congress of People Who Stutter.
Further changes in the structure of ISA were agreed to at an ISA membership meeting at the Fifth World Congress in South Africa in July 1998.
The most recent version of the ISA constitution -- which you can find on the ISA website at www.stutterisa.org/ -- was ratified at an ISA membership meeting in July 2001 just before the Sixth World Congress of People Who Stutter in Ghent, Belgium.
Vision
The ISA vision is a world that understands stuttering.
Mission
ISA seeks to improve the conditions of all whose lives are affected by stuttering in all countries by among other things:
- Sharing concepts and experiences in stuttering self-help and therapies
- Helping to develop the self-help movement in countries around the world
- Assisting in communication among people who stutter, parents of children who stutter, and therapists and researchers from all disciplines
- Educating the general public about stuttering
- Promoting co-operation between national and international organizations of people who stutter such as the European League of Stuttering Associations (ELSA) and other international organizations such as the International Fluency Association (IFA)
- Publishing a newsletter at least once a year and maintaining a website
ISA has developed a number of guiding principles including the following:
- ISA recognizes that all national self-help organizations are independent, and are free to organize projects in their own countries
- ISA and national and international self-help organizations should work together and co-operate on all that is necessary
- ISA should encourage expression of varying points of view, on theoretical or debatable issues related to self-help, prevention, diagnosis and treatment of stuttering, rather than strive for consensus among ISA members on such issues
Membership
Membership in ISA is possible only for national or international self-help organizations of people who stutter, not for individual persons with the exception of non-voting special categories such as Special Friends and Honorary Members. The following countries are currently represented in ISA:
- Argentina, Australia, Austria, Belgium, Bulgaria, Canada, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, India, Iran, Ireland, Israel, Japan, Kyrgyzstan, Lithuania, Luxemburg, The Netherlands, New Zealand, Norway, Poland, South Africa, Spain, Sweden, Switzerland, United Kingdom, U.S.A
The term Special Friends refers to individual memberships for people, from countries that are not yet members of ISA, who wish to assist in ISA outreach efforts in their respective countries. Among countries represented by ISA Special Friends are:
- Algeria, Brazil, China, Czech Republic, Peru, Slovakia, South Korea, Venezuela
The other category is that of Honorary Members. The term Honorary Members refers to individuals who have been given special membership in recognition of their work on behalf of people who stutter. The first honorary lifetime members of ISA are Jane Fraser of the Stuttering Foundation of America, and Judith Kuster of the Stuttering Home Page.
Members of the ISA board of directors, as well as the ISA advisory board, are listed on the ISA website, which also provides contact information for the ISA member associations. The chair of the ISA board of directors is Mark Irwin mirwin@cobweb.com.au of Australia. The immediate past chair is Thomas Krall of Germany (who will have a new email address soon).
Current Projects
As Mark Irwin has recently outlined in a message on the ISA website, current areas of interest for ISA include:
- Outreach to people around the world
- Maintenance of a website
- Publishing a biannual newsletter
- Development of positive relationships with speech professionals
- Achievement of recognition from the World Health Organization
- Raising funds for scholarships for attendance at World Congresses for People Who Stutter
- Supporting the annual International Stuttering Awareness Day (ISAD) held on or about October 22 of each year
Specific plans of the ISA are to:
- Hold an International Year of the Child Who Stutters in 2004
- Assist national associations to develop CD-ROMs with information for children who stutter, their parents, teachers, and fluent classmates
- Influence governments and educational institutions to ensure such CD-ROMs are distributed as effectively as possible
- Support the Seventh World Congress of People Who Stutter in Perth Australia in 2004
Public Education
Public education is a key element in many ISA projects. In that context, ISA is a strong supporter of the IPATS project (International Project on Attitudes Toward Stuttering) initiated by Ken St. Louis of the USA. The project seeks to find out if there are differences in how stuttering is perceived in countries around the world. It also seeks to develop a survey instrument that will help us to find out whether public education campaigns are effective in changing public attitudes about stuttering.
Ken St. Louis has suggested it may be more effective to educate the public about what to "do" when speaking with stutterers, rather than focusing on just providing general information. For example, it's important to let non-stutterers know that it's not helpful to try to complete a sentence for a person who stutters. He also has suggested that having stutterers share their individual "stories" is another highly effective way to provide valuable public education about stuttering. A recent book by Ken St. Louis, Living with Stuttering, underlines the value of such stories.
ISA website
At a meeting in August 2000 in Nyborg, Denmark during the Third World Congress on Fluency Disorders organized by the International Fluency Association (IFA), the ISA board of directors decided to update the original ISA website. ISA owes thanks to Eddy Orlowsky of the Netherlands, who created the original ISA website following the ISA founding meeting in Sweden in 1995.
The goal of the new site, at www.stutterisa.org/, is to create a global self-help network for people who stutter and a meeting point for stuttering on the Internet.
Looking at the above goal and at the same time looking at our world, the ISA board concluded that the ISA website is in fact a place of dreams. For that reason, the ISA website features sky blue and white colors to give an impression of being in clouds or in a world of dreams.
The site is based on development guidelines which specify that it:
- Be a reflection of the ISA mission
- Be the official voice of ISA along with One Voice
- Provide a forum in which ISA member associations can express their opinions and desires
The ISA board also specified that the site should include an emphasized link to the Stuttering Home Page. Accordingly, there is a link to the latter site on the upper left corner on each page of the ISA website.
By way of meeting operational requirements
- The ISA website will be maintained and updated by a webmaster group
- The webmaster group will be a group of people and not a single individual, to eliminate dependency on just one person
- The site will be built in a way that it can be easily modified or updated, and not necessarily by the originator
Currently the website features:
- A home page with ISA news and calendar
- ISA mission page including the ISA mission statement, ISA messages, and a Bill of Rights and Responsibilities for People Who Stutter
- ISA organizational page including:
- General information about ISA
- ISA board of directors, and ISA advisory board
- ISA constitution
- Listing of ISA member associations and links to their websites
- Stuttering page including: General information about stuttering, and accounts of experiences with varied therapies
- Publications page including: Newsletters page, which enables downloading of the ISA newsletter and several newsletters of ISA member associations, and features a link to the ELSA newsletter
- Articles about Dreams / Ideas
Two additional pages are in development:
- Self-help page devoted to promotion of the stuttering self-help movement, including:
- Contact information for self-help groups around the world
- Means for online meetings to assist in founding of new self-help groups
- Information on how to organize and run a self-help group
- Links to stuttering chat rooms and discussion groups
- A discussion group, built in collaboration with the Stuttering Home Page, focusing on topics related to stuttering.
- Outreach page promoting the founding of stuttering associations worldwide and including:
- Articles by ISA Special Friends about plans and the problems in their countries
- Means to send messages to Special Friends by people who stutter in their respective countries
The webmaster group will focus on collecting content for the site, web design, and implementation of the website. Currently three persons serve as volunteers on the webmaster group: Benny Ravid from Israel (Head of webmaster group), Zvika Hernik from Israel, and Mario D'hont from Belgium
The group welcomes additional volunteers. Please contact Benny Ravid bravid@runbox.com for more information.
One Voice
One Voice, the ISA newsletter, offers a good overview of ISA activities -- and of its vision for the future. Recent issues are available on the ISA website.
Working groups
ISA working groups are active in several areas. For example, the ISA outreach working group seeks to establish contacts with people who stutter in countries of the world that are not yet members of ISA. The chair of this working group, Stefan Hoffmann sthoff160@gmx.net, has a particular interest in furthering contacts in these areas:
- Latin America, Africa, Southern and Eastern Europe, East and South East Asia, Arabian Language Countries
Here is a list of the chairs of the ISA's working groups:
Michael Sugarman MSugarman1@aol.com of the USA is chair of the International Stuttering Awareness Day working group.
Gert Reunes of Belgium vzw.best@skynet.be is chair of the video working group.
Beatriz Biain De Touzet beatriztouzet@interar.com.ar of Argentina is chair of the professional relations working group.
Andrew Harding ah@stammering.org of Australia (currently working in Great Britain) is chair of the employment and stuttering working group.
Annie Bradberry Abradberry@aol.com of the USA is chair of the resource working group, and of the fund development working group.
Stefan Hoffmann sthoff160@gmx.net of Germany (currently working in China) is chair of the outreach working group.
Gert Reunes vzw.best@skynet.be of Belgium and Martine De Vloed Mart.devloed@belgacom.net of Belgium are co-chairs of the WHO (World Health Organization) working group.
Benny Ravid bravid@runbox.com of Israel is webmaster of the ISA website. Mario D'hont mario.dhont@skynet along with Zvika Hernik are working with Benny. As well, Martine De Vloed is the ISA website email contact person.
Stefan Hoffmann and Annie Bradberry will co-chair the ISA Logo working group.
Martine De Vloed is coordinator of the One Voice newsletter.
By way of summary, we at ISA believe that as people who stutter, we all have a lot to learn from each other, no matter what language we may speak, and no matter where in the world we may live. Please contact Mark Irwin mirwin@cobweb.com.au if you wish to assist in the work of the International Stuttering Association or would like further information.
September 14, 2001
