On-Line Self Help Groups: An alternative for Stuttering Attention Pedro R. Rodríguez C. Institute of Psychology Central University of Venezuela Email: firstname.lastname@example.org My experience as a stutterer and a psychologist leads me to ask, when Ithink of the attention of stutterers: What do we stutterers need?, and the first answer Ifind is : Knowing and understanding stuttering. The second question that comes to my mind is: How we do it? And I an-swer myself: Reading about the subject…but not all that is read is useful. We can alsosearch the opinions of specialists…but the opinion of “specialists” is not always useful inunderstanding what is happening to us. Then I think that a good alternative is talking toother stutterers…but, how does one go about it? At a first instance I though of interview-ing stutterers, but very few accepted. Then I thought of Focal Groups the discuss thesubject, but I did not manage organizing a group. Finally it occurred to me using Internet,and that is how TTM-L got started, and later “We Stutterers” and “I Communicate”. TTM-L gets started as a Virtual Discussion Group to allow us to know stutteringfrom the point of view of the stutterer and getting to understand it. A discussion list wascreated and stutterers and people interested in stuttering were invited to join it. At first the number of members and the messages were scarce (see Graph 1).Most people joined the list asking for “recipes to cure stuttering” and few were interestedin talking about it. As time passed and the number of members increased the requestsfor “recipes to cure stuttering” started to decrease and the number of themes discussedincreased. So, bit-by-bit, TTM-L ceased to be a Discussion Group and became a Self-Help Group with the following purposes: o To serve as a means for the interchange of experiences regarding stuttering for stutters and people interested in stuttering. o To help us mutually to: o Understand our stuttering. o To accept it. o To find tools to help us to manage it better. o To allow non-stutterers to know the problems of stutters and their implications.
Traffic in TTM-L (January - 2000 to May - 20001) 350 300 250 Number of Mails 200 150 100 50 0 Jan. Feb. Mar. April May June July Aug. Sep. Oct. Nov. Dec. Jan. Feb. Mar. April May Month At the moment TTM-L is a Virtual Community of 118 members, with active partici-pation of 25 to 30 members (the rest do not participate actively, but get passive accessto the information and opinions submitted by the active participants in the discussions).In Table 1 the Country composition of TTM-L is presented. Table No. 1: Country composition of TTM-L Country N % Argentina 16 13.9% Brasil 1 0.9% Colombia 1 0.9% Chile 2 1.7% Dinamarca 1 0.9% España 49 40.9% Guatemala 1 0.9% México 3 2.6% Perú 5 4.3% Rep. Dominicana 1 0.9% Venezuela 6 5.2% Otros (desconocido) 32 27.0% And the themes discussed are, among others:o What is stuttering for the stutterer.o Perceptions held by stutterers about their stuttering.o Positive experiences.o Traumatic experiences.o Relations of the stutterer and his social environment. External reactions and conse- quences for the stutterer.
o Search for solutions (treatments, successes, failures, frustrations).o Myths and fantasies about stuttering .o Reflexions about the “condition” of being a stutterer .o Fears experienced.o Suggestions for parents of child stutterers.o Benefits of TTM-L and the web page. What have we found up to now?o Stuttering is conceived as a unique experience that nobody, except another stutterer may understand.o One does not speak of stuttering. It is something so painful that it is better to keep silent, both on the part of the stutterer as on the part of his family.o Great resentment towards professional who treat stuttering. They do not understand, they do not give solutions.o Search for a “miracle cure”o Feeling of fear, hate and shame Fear of:o Being a stutterer.o Verbal interaction.o To be found out.o Of stuttering.o To the consequences of stuttering . o Rejection. o Being made fun of, laughs, minusvaluation, stigmatization. Hate and shame for:o Being a stutterer.o Not being able to control blockages in speech.o Having to represent false roles.o Being treated the way we are often treated.What are the results of TTM-L?o The stutterer starts to discover communalities in they life experience.o Feels supported and understood.o Begins to talk about his stuttering.o Works out his fears, hates and guilts.o Faces up to speaking situations that before he would avoid.o Starts searching for strategies that allows his to live with his problem, giving up the idea of “searching for a magic cure” to “stop being a stutterer”. The needs detected in TTM-L and the positive experience of using internet to at-tend adult stutterers, leads us to create “We Stutterers” which is a Web Page in Spanishwhere information regarding stuttering is provided, at the same time the Web Page is ameans of recruiting new members for TTM-L
The sections included at present in “We Stutterers” are:o What is stuttering.o Some useful advices for parents, teachers and doctors.o Faq about stuttering and the stutterer.o Stuttering seen by the stutterers.o Messages of stutterers for stutterers.o Did you know?o How to react to a person who stutters.o Information about our self-help groups.o Web pages and discussion groups in other languages.o Bibliography on stuttering.o Managing our stuttering.o Our gallery of members.o Documents.o Information regarding events. Recently and as a result of a petition from mothers and young stutterers “I Com-municate” was created, this like TTM-L, is a virtual space where young stutterers be-tween 10 and 15 years old communicate and interchange experiences The woks carried out until now, is perceived by the members of the group as benefi-cious, as evidenced by many communications received by TTM-L. These manifesta-tions, as well as my own experience of the process, makes us think that even thoughface-to-face communications continues to be the best therapeutic situation, Internet isan excellent and effective alternative. Besides providing a means to communicateknowledge about stuttering, it allows the users to work out emotions and feelings experi-enced by being a stutterer; and helps in the process of structuring a better way to facethe problem and to relate to others in a less traumatic and more efficient fashion.