About the presenter: Kenneth St. Louis is a professor at West Virginia University and a consultant on the Turkish Scientific and Exchange Organization (TUBITAK) project designed to bring self-help to Turkish speaking people who stutter He has devoted his career to better understanding and treating stuttering and has presented and published widely on stuttering and cluttering. Currently, he coordinates the International Project on Attitudes Toward Human Attributes whose primary emphasis is measuring public attitudes toward stuttering worldwide. A former Peace Corps Volunteer in Turkey, St. Louis has made international presentations in Canada, Belgium, England, Australia, Germany, France, Bulgaria, and Turkey.
About the presenter: Seyhun Topbas is a professor and chairperson of DILKOM, the Education, Research, and Training Center for Speech and Language Pathology (DILKOM) at Anadolu University in Eskisehir, Turkey. She has authored numerous textbooks, tests, and chapters in phonology and language disorders and is a founder member of the Turkish Association of Speech and Language Pathologists. She has arranged, and participated in, numerous collaborative visits involving Turkey, USA, UK, and other countries. Topbas is the principal investigator on the project designed to bring self-help to Turkish speaking people who stutter granted by The Scientific and Technological Research Council of Turkey (TUBITAK).

You can post Questions/comments about the following paper to the author before October 22, 2008.

An Online Initiative to Bring Self-Help to Turkish Speaking Stutterers

by Kenneth St. Louis, from West Virginia, USA, and Seyhun Topbas, from Turkey

ABSTRACT: The Turkish Stuttering Association (or TKB for "Türkiye Kekemelik Birlig i" in Turkish) was established as a new self-help organization for people who stutter in Turkey and other Turkish-speaking people around the world. The first step was to launch a website in both Turkish and English. In addition to providing information, the website permits discussions among stutterers and other interested persons. The next step will be to encourage face-to-face chapters of the TKB with help from the website and from annual workshops at the Education, Research, and Training Center for Speech and Language Pathology (DILKOM) at Anadolu University in Eskisehir, Turkey.

Although the self-help movement in stuttering is well established and growing internationally (Diggs, 1990; Reeves, 2006), there are numerous places around the world where it has not yet taken hold. Even where there is currently no self-help presence; however, the Internet provides the opportunity for persons to achieve some of the benefits that self-help offers. This 11th annual International Stuttering Awareness Day Online Conference is one such example, where stutterers anywhere have for a decade interacted with other stutterers, clinicians, and researchers to share personal stories, post ideas, or simply "listen" to others (Kuster, 2002). The most important limiting factor for accruing these benefits is the ability to read and write English. A few authors have written articles in other languages, but compared to English, these have been rare. Of course, translation programs exist for quick translations to other languages, but using such programs is time consuming and frequently yield translations that are so imperfect as to render them difficult to understand. This situation is also true of most of the other objective information about stuttering available on the Internet; the vast majority of it is in English.

Due to a paucity of information in Turkish, there is no systematic self-help presence for stuttering persons who speak, read, and write Turkish. A brief look at such websites as the StutteringHomePage reveals that Turkey or Turkish are notably absent in existing lists of websites, national organizations, and articles available for reading or downloads. This is somewhat surprising since Turkey is a country of about 70 million people where over 90% of the inhabitants speak Turkish (Gulcan, 2006; Turkstat, 2008). There are estimated 15 million more people in the world who speak Turkish essentially identical to that spoken in Turkey, including more than 2 million in Germany (Sohn & Ozcan, 2006) and another 3 million in Europe (Gulcan, 2006). Additionally, there are about 100 million more speakers of other Turkic languages across Europe and Asia that closely resemble Turkish (Katzner, 2002). The following Wikipedia link provides sample comparisons of Turkish with old Turkish and nine other Turkic languages: (http://en.wikipedia.org/wiki/Turkic_languages#Vocabulary_comparison)

A growing number of Turkish-speaking, educated people have learned English, but most of the population cannot effectively read English well enough to access sufficient information about stuttering from the large number of resources available on the Internet. Obviously, therefore, an urgent need exists to provide information about stuttering in Turkish to Turkish literate people throughout the world.

Stuttering ("kekemelik" or "kekeme" in Turkish) does have a significant presence on the internet, however. Most of the 103,000 hits on a Google search of the word, "kekemelik" along with the Turkish words for "speech disorder," relate to a plethora of commercial schools and courses designed to cure stuttering. These "therapies" are frequently carried out by psychologists, psychiatrists, special educators, and others. (Currently, there are fewer than 50 Turkish trained speech-language pathologists in the country. Topbas, 2006.) Very few websites relate to simply providing current and accurate information about stuttering, and virtually none relate to self-help.

To alleviate this need, a project has been initiated through a grant allocated by the Scientific and Technological Research Council of Turkey (TUBITAK)*. One of the aims of the project is to establish the Turkish Stuttering Association (or Türkiye Kekemelik Birlig i, in Turkish). The TKB is a volunteer, not-for-profit organization whose objectives are to: (a) provide accurate and scientific information about stuttering in Turkish and English to anyone who stutters or who is interested in the problem of stuttering; (b) provide a forum for Turkish-speaking people who stutter to share information, experiences, and stories; (c) foster self-help activities and groups for people who stutter in Turkey and other Turkish-speaking regions; (d) partner with speech-language pathologists in Turkey and other Turkish-speaking regions to help children and adults who stutter-- and their families -- to find information and help for their stuttering; (e) interact with international organizations or initiatives designed to foster improved self-help and professional help for people who stutter; and (f) provide assistance to other volunteer, not-for-profit groups in other countries who strive to bring self-help and professional help to people who stutter.

To launch the TKB, a new website (www.kekemelik.web.tr) is under development. The website will be in Turkish to provide needed information to Turkish speaking individuals. It will also be in English so that it can be accessed by non-Turkish speaking persons. As most objective stuttering websites do, it will provide information about the nature and treatment of stuttering. Much of the information included was adapted from a chapter entitled "Stuttering 101" in a St. Louis's (2001) book, Living With Stuttering: Stories, Basics, Resources, and Hope. Additional information will be added from other good self-help websites that has been translated to Turkish (along with links to the relevant website pages). The developers endeavored to provide noncommercial information that is both current and accurate, but at the same time comprehensible to nonprofessional readers.

To foster the sharing among stutterers and interested persons, the website features two discussion boards, in Turkish only. The discussions are accessible only through registrations whereby a discussion leader will assign usernames and passwords. The leader will monitor discussions and interact with participants as necessary to assure that posts are stuttering-related, courteous, and free of advocacy for various political or religious positions. Two discussion options will be available. The first will be an open discussion board wherein participants can post information or questions about any topic related to stuttering. For example, a person joining the discussion will likely want to write about his or her immediate concern or reason for joining. The second option will be a series of structured discussions on assigned topics by the discussion leader, e.g., "Situations or environments that make stuttering better or worse." At the end of two or three weeks of discussion, the structured discussion will be closed and then posted as an archive on the open website for anyone to read. The open discussion will be not archived nor available for non-registered users.

These discussions are patterned after the threaded discussion of this ISAD Online conference. The open discussions will be much like "The Professor Is In" sections where participants can post questions on any topic. Unlike that forum, however, the posting will not ever be available to unregistered visitors to the website. The structured discussions will be more similar to those that follow a specific presentation, such as this one. Moreover, they will be archived similarly to the archived ISAD conferences.

Another feature for registered users will be the option to provide an anonymous biographical sketch and/or personal stories related to their stuttering. No email or identifying information will be posted so that discussants will be protected from spammers and Internet predators while at the same time providing the ability to know something about other participants who wish to provide some personal profiles or experiences.

One of the TKB goals is to foster face-to-face meetings among stutterers. The website will provide written suggestions and guidelines, translated from existing self-help websites, for starting TKB chapters wherever one is interested in doing so. Additionally, to further facilitate this important step, the first of planned annual two-day workshop for interested persons who stutter is scheduled at DILKOM in Eskisehir in 2009. The workshop will be designed to permit initial face-to-face interactions among interested stutterers and to provide specific guidelines for starting or leading local chapters. These workshops will function much like similar workshops for chapter leaders of the National Stuttering Association that precede its annual convention. The workshops will also provide an introduction to speech therapy options at DILKOM and other sites in Turkey, comparing speech therapy by trained speech-language pathologists with some of the courses and workshops offered by other professions around the country.

Unlike many existing self-help organization where people who stutter have taken the lead to establish groups, this project provides the framework for that to happen secondarily. It is critical that as TKB leaders emerge, they be encouraged to take necessary steps to formalize the TKB structure in Turkey and possibly in other Turkish speaking areas. Once established with a membership and governance structure, we hope that the TKB will move to broaden its base, begin to confront negative public attitudes and actions toward stuttering, and otherwise advocate for those who stutter. Moreover, we hope that elected representatives will be chosen to relate to international organizations, such as the International Stuttering Association (ISA). This will permit sharing of challenges, successes, and unique features of the TKB experience with representatives from other self-help organizations and also foster learning from them. When this happens, if the past can predict future outcomes, these inter-organizational collaborations typically result in "win-win" interactions among various national groups.

Finally, the project has as one of its goals to foster stuttering self-help growth in other countries or language groups not currently being served. This is another reason that the TKB website is in English, notably, that interested persons in other countries can use the same concept and translate some of the same information to other languages.

*ACKNOWLEDGEMENTS: The Scientific and Technological Research Council of Turkey (TUBITAK) provided funding to Seyhun Topbas and her colleagues at the Education, Research, and Training Center for Speech and Language Pathology (DILKOM) at Anadolu University in Eskisehir, Turkey to launch the TKB website. Contributors and consultants on the project include: Ilknur Mavis, Sertan Ozdemir, Muge Tuncer, Ozlem Unal, Selcuk Guven, Oya Topbas, Asli Altinsoy, Pinar Ege, and Mert Mavis from Turkey and Kenneth St. Louis, Cheryl Prichard, and Rae Jean Sielen from the USA. Kenneth St. Louis's contributions were further funded by a Specialist Fulbright grant.


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You can post Questions/comments about the above paper to the authors before October 22, 2008.

submitted August 5, 2008
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