Judith Maginnis Kuster, Minnesota State University, Mankato
published in ACQ, June 2002
Stuttering is a much misunderstood speech disorder, affecting 1% of the world’s population, or 60 million children, teenagers, and adults. The Internet provides an important meeting point where professionals can share information and provide support to people who stutter (PWS), and their families. It also offers a means for students to learn and for practicing clinicians to update their information and skills in the area of stuttering.
October 22, 1998, marked the first International Stuttering Awareness Day (ISAD). Supported by the International Fluency Association (IFA), the International Stuttering Association (ISA), the European League of Stuttering Associations (ELSA) and the American Speech-Language and Hearing Association (ASHA), the stated purpose of ISAD is "to promote awareness and understanding and to show appreciation for people who stutter and the speech language professionals who work with them."
HOW DID A CHATROOM BECOME A CONFERENCE?
When the inaugural ISAD was announced, a chatroom was suggested as a way to disseminate information and raise public awareness of stuttering.
In fact, a chatroom had already been started on The Stuttering Home Page (SHP - http://www.stutteringhomepage.com) in late 1997, but at that time the technology and level of Internet connection required excluded many potential participants. Furthermore since this was to be an international effort, a chatroom, which provided the opportunity for synchronous, live discussion did not seem feasible due to time zones differences around the world. With rapid improvements in technology, access, and web savvy, these seemingly insurmountable obstacles were overcome, and the idea of a global workshop or conference, using the Internet, was born with the decision to hold an online conference beginning on October 1 and culminating on October 22, International Stuttering Awareness Day.
The freely available ISAD Conferences are composed of panel discussions (comprising several 500 — 1000 word papers written around a specific topic); invited 2000-3000 word papers written in a "reader friendly" style, appealing to both professionals and consumers; and poster sessions (up to 1500 words) with students and professionals reporting on current research projects. A special section of the conferences is "Office Hours: the professor is in" — where consumers can ask questions of professors who specialize in stuttering.
Each panel, paper, poster and office hours is linked to a "threaded discussion," an open bulletin board where participants can comment or ask questions, and authors can respond. These threaded discussions are "closed" at the end of the conference, but all conference papers as well as information posted during the conferences, remain online for anyone to access.
The title of the 1998 conference was "The Power of Your Voice."
It had three "panels" and 30 invited papers.
The 1999 conference, "Many Languages: One Voice" 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 the translation service (Babelfish) was added.
In 2000, "Reach Out To Children Who Stutter" boasted of 3 panels, 25 invited papers, 8 poster sessions, and two "Office Hours" sections with 10 professionals on tap. The second "Office Hours" was for children. They could post a message to help parents, teachers, and friends understand about stuttering. Several children's books about stuttering were included in the conference, and an art gallery with over 50 pictures of stuttering, drawn by children, invited other children to submit pictures as well. The 2000 conference was the first to include papers in languages other than English.
"Changing Perceptions: You are Not Alone" consisted of 3 panels, and rather than separating out the poster sessions, they were incorporated into the papers, totaling 30. The popular "Professor is In" featured 9 professionals who responded to questions.
Jeffrey Hundstad, the computer support person at Minnesota State University, helped collect conference statistics, displayed in Table 1. These statistics under-report the actual participation because of the way the Internet works. Many large Internet service providers (ISPs) and universities develop "proxy servers" so the first time anyone from that ISP accesses a web page, it brings a copy into the ISPs "cache." Any subsequent "hits" from anyone using the same ISP on that day, will not be reflected in the web statistics, since the participant is accessing the "cached copy" and not the actual web site. There were many proxy servers reflected in the web analysis provided by the university. The "hit counter" placed on the front page of the online conferences does not reflect the actual numbers, either. There is no way of knowing how many actual "hits" there were.
Only those who posted on the threaded discussion were calculated in the participant statistics. At times it was impossible to determine which constituent group they were from, although the nature of their questions/comments often revealed if they were clinicians, professors, students, parents of children who stutter, or PWS. The breakdown of participants included approximately 1/3 each of professionals, consumers, and students.
Participants came from 56 different countries, and the attendance for a single session (number of times a paper was accessed) ranged from 85 (a good attendance at any conventional conference session) to 371.
The first challenge was finding the presenters for the online conference and deciding how many papers to include. Since the conferences were offered for 1.5 continuing education units (CEUs) or 1 semester credit, at least 15 "contact hours" or 15 hours of participation were required. To accomplish this goal, each conference has had 3 "panels" with 2 to 10 short papers. The number of full-length papers has ranged from 25 to 30 and for two years, there were 8 posters. There have been from 50 to 68 presenters and co-presenters involved in each conference.
Two goals of the conference have been to have international representation, and to have a balance between consumers and professionals as invited presenters. Presenters are invited by the conference convener, and only rarely have declined. Table 4 provides an indication of ISAD presenters to date.
A personal goal has been to minimize controversy, even though the conferences address very controversial subject matter — stuttering. That meant attempting to avoid papers that could be perceived as advertising products or programs, or those that strongly opposed certain products or programs. Although there have been a few unpleasant instances (including threat of a lawsuit, being accused of "censorship" and having my department chair contacted when I removed what I considered an inappropriate attack on a national organization, and rare cases of individuals "attacking" the professionals who treat stuttering or inappropriately advertising their favorite program or product in the threaded discussions) the majority of the participants in the four conferences have been courteous and participated appropriately.
Most authors have been able to meet a September 1 deadline. Inevitably, some papers were late, too short, or too long and had to be edited or re-negotiated. A few authors with limited English proficiency submitted papers that the conference coordinator translated from German, Spanish or French using an online translation service.
Unlike a print journal, where after a paper has been submitted, changes are no longer possible, changes in wording, additions and corrections in spelling or information are possible on the Internet. Several times when authors re-read their papers, they requested changes in wording or content.
My level of technical expertise has grown with each conference, in part through some of the technical challenges presented by the authors, including scanning, creating gif images, learning the html code for foreign symbols and tables, creating threaded discussions, and dealing with viruses.
At times, receiving the papers was a challenge. A template was developed for the conference, making it a simple matter to put text information into the appropriate html format to place on the Internet. However, some papers arrived in a format unreadable by my computer. In one case, the author refused to send a paper as simple email or as a word document, using an encryption format that was unreadable and unfamiliar to anyone on my campus. It took several hours with a technical specialist searching the Internet for the unusual encryption format before we were able to open it.
One contributor attempted to send a table that was formatted as three huge jpeg files, expecting that I would be able to open them and fuse them into a single jpeg. One would not open. Another sent a FAX copy of tables, expecting that I could scan them and put them online. What I finally had to do was retype the tables, take a screen dump to make a pict file, use a gif converter to convert the pict into a gif file, adjust the gif with Adobe Photoshop and finally incorporate it into the paper.
The level of technical expertise of both the presenters and participants has at times been challenging. Many mistakes in using the threaded discussions (such as multiple postings, forgetting to put in a subject line, posting incomplete or inaccurate information that the poster requested I change) have taken countless hours to "fix." All presenters are encouraged to use a practice threaded discussion (TD) prior to the conference and there is a practice TD for participants to use, as well as careful instructions on each TD page, but mistakes are frequent.
There have been instances where both presenters and participants had access only to email, and could not reach the conference web pages. Others found the cost of live online participation was prohibitive. They were still included, with the conference coordinator forwarding papers and questions/comments to them and then posting their responses. This was especially challenging for a participant in Cameroon who was eager to read as many of the papers as possible. Another participant in India found that downloading the entire conference saved him considerable expense in online time.
There were also major challenges with the threaded discussion technology. One year, there were too many participants simultaneously for the server to handle, and the entire system "froze," needing to be rebooted several times a day. The technology staff on campus spent an entire morning solving the problem. Another year the campus upgraded computer systems, making the available software necessary to create the threaded discussions, useless. A computer on campus was found that had not been updated, and the software worked, but any changes to the threaded discussions during the conference could be made only from that computer.
A balance needs to be maintained of people posting questions and presenters posting responses. Although the statistics indicate active reading of the conference papers, many are reluctant to post comments or questions. At the same time, too many responses could over-burden the presenters. At this time, the balance appears appropriate. However, many of the participants respond to the earlier papers, which are placed alphabetically, leaving those near the end of the alphabet with fewer questions. Also, several participants finally post toward the end of the conference dates, leaving some presenters with many questions to respond to close to the conclusion of the conference.
Publicizing the Conference
Do you remember the movie "Field of Dreams," in which a voice suggests, "If you build it, they will come"? This is not necessarily true with the Internet, especially with an online conference that is open for only three weeks. Although previous conferences are now included in some of the online search engines, because of the relatively short conference duration, search engines cannot be depended upon to find them. There is always room for improvement in the area of publicity, but limitations of time and lack of staff and monetary support for advertising, have precluded more aggressive advertising.
The organizers of International Stuttering Awareness Day, Michael Sugarman and Amy Johnson, advertise the online conference in brochures and announcements sent out about ISAD.
Personal email correspondence is sent to professors (by me) late in the summer when they may be working on course syllabi for the following semester, suggesting ways they can use the online conference in their courses on stuttering. A follow-up email is sent to them again shortly before the conference opens. Personal emails are sent to many people who stutter that have requested information in the past. Stuttering support organizations throughout the world that have an Internet presence are contacted with information and a sample press release, and many link to the online conference from their web site and advertise it in their newsletters. The Minnesota State University Communication Disorders program advertises the conferences in the CEU offerings, on their department website, and in the Minnesota State Speech-Language and Hearing Association newsletter. A banner ad is placed at the top of the Stuttering Home Page, linking to the conference. Information about the online conference is placed on various mailing lists about communication disorders, and especially about stuttering, not only in the United States, but also in Europe and South America. Articles about the online conference have appeared in ASHA publications, and there have been presentations about the online conferences at the ELSA conference in Vienna, Austria, at the ISA conference in Ghent, Belgium, and at the ASHA convention in Washington, DC.
RESPONSE TO THE CONFERENCES
The online conferences have provided many rewards, including the personal satisfaction of providing a resource that others find valuable. Feedback comes in four different ways: from a "comments about this conference" page, a questionnaire that is sometimes sent out to the presenters, an evaluation of web-based learning statement from students who are participating in the online conference for credit, and from unsolicited email. At times the comments include ideas for future topics and suggestions on the format of the conference, but in general, the comments all express a highly positive degree of satisfaction. A few samples are included below:
From a professor: "I am an academic who teaches fluency disorders at this university. The conference has been excellent. I've been very impressed with the papers, the material has been extremely interesting and wide ranging." (UK).
From a clinician: "I have received more information from this than almost any other graduate level class, in-service or workshop since I started teaching." (USA)
From a student: "I am totally sad! I just finished reading my last paper of the Online Conference. I had expected to feel relief and accomplishment…instead, I find myself feeling at a loss that I have no more papers to read! I can relate it to the feeling of wanting to finish a good novel… Then when I get to that ending, I wish there were more chapters so I could continue reading." (USA)
From a researcher: "Congratulations on the successful ISAD conference! And thanks for your great work that made it possible…We got some very interesting connections from the conference for the topic of our research, so personally for us the conference was very interesting and scholarly rewarding as well." (Australia)
From a parent: "I am so grateful to the speech clinician at my son's school who gave us the brochure for your conference. I now have some real hope that we can help him out. [The article on final syllable repetition] described a patient with the exact type of dysfluency my son shows. No neurologist or speech pathologist I have talked with before has ever heard of this, and I was thrilled to [find information and have my questions answered]. (USA)
From a presenter: "Thank you so much for the wonderful work you achieved. I can hardly believe that there were so many people to join the conference and ask questions and give comments. This is the most democratic conference I ever attended!" (Belgium)
From a person who stutters: "Special Thanks. As a PWS, I should thank all people involved in making ISAD Conference happen. Many respected professors/slps give their valuable time in replying to questions posted by PWS like me." (India)
Another online conference is planned for October 1-22, 2002. Please come!