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 for 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 the 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.isastutter.org – was ratified at an ISA membership meeting in July 2001 just before the Sixth World Congress of People Who Stutter in Ghent, Belgium.
The Seventh World Congress for People Who Stutter was held in Perth, Australia, in February 2004.
The ISA’s big project for 2005 was holding the first African Stuttering Conference, in Douala, Cameroon. People from 14 countries in Africa attended the October conference, as well as people who stutter and speech pathologists from outside Africa.
The ISA vision is: A world that understands stuttering.
The ISA seeks to improve the conditions of all those 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.
The ISA has developed a number of guiding principles including:
- The ISA recognizes that all national self-help organizations are independent, and are free to organize projects in their own countries.
- The ISA and national and international self-help organizations should work together and co-operate on all that is necessary.
- The 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 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 represented in the ISA:
Argentina, Australia, Austria, Belgium, Brazil, Bulgaria, Burkina Faso, Cameroon, Canada, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, India, Iran, Ireland, Israel, Japan, Kyrgyzstan, Lithuania, Luxemburg, Nepal, The Netherlands, New Zealand, Norway, Poland, South Africa, Spain, Sweden, Switzerland, the United Kingdom, and the United States of America.
The following international organizations are represented in the ISA:
The European League of Stuttering Associations (ELSA), Passing Twice (a group of gay, lesbian, bisexual and transgender people who stutter) and TTM-L (a group of Spanish speaking people who stutter).
The term “special friends” refers to individual memberships for people, from countries that are not yet members of the ISA, who wish to assist in the ISA outreach efforts in their respective countries.
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 the ISA are Jane Fraser, of the Stuttering Foundation of America, and Judith Kuster, of the Stuttering Home Page at www.stutteringhomepage.com
Members of the ISA board of directors, as well as the ISA advisory board, are listed on the ISA website here, which also provides contact information for the ISA member associations.
Current areas of interest for the 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.
Public education is a key element in many ISA projects. In that context, the ISA is a strong supporter of the IPATS project (International Project on Attitudes Toward Stuttering), initiated by Ken St Louis, of the United States of America. 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 people who stutter, 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.
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.
The webmaster group focuses on collecting content for the site, web design and implementation of the website.
The group welcomes volunteers. Please contact the webmaster at firstname.lastname@example.org for more information.
One Voice, the ISA newsletter, offers a good overview of ISA activities and of its vision for the future. Recent issues are available here.
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 the ISA. Other working groups include: The International Stuttering Awareness Day working group, the video group, the professional relations group, the employment and stuttering group, the resource group, the fund development group, the ISA website group and the One Voice newsletter group.
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 the ISA Chair if you wish to assist in the work of the International Stuttering Association or would like further information.