Ponencia presentada en el Congreso de ISA en el 2001

1. On-Line Self Help Groups: An alternative for Stuttering Attention
Pedro R. Rodríguez C.
Institute of Psychology
Central University of Venezuela
Email: prodriguez@reacciun.ve
My experience as a stutterer and a psychologist leads me to ask, when I
think of the attention of stutterers: What do we stutterers need?, and the first answer I
find 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 also
search the opinions of specialists…but the opinion of “specialists” is not always useful in
understanding what is happening to us. Then I think that a good alternative is talking to
other 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 the
subject, 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 stuttering
from the point of view of the stutterer and getting to understand it. A discussion list was
created 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 interested
in talking about it. As time passed and the number of members increased the requests
for “recipes to cure stuttering” started to decrease and the number of themes discussed
increased. 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.

2. 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 access
to 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.

3. 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 Spanish
where information regarding stuttering is provided, at the same time the Web Page is a
means of recruiting new members for TTM-L

4. 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 though
face-to-face communications continues to be the best therapeutic situation, Internet is
an excellent and effective alternative. Besides providing a means to communicate
knowledge 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 face
the problem and to relate to others in a less traumatic and more efficient fashion.