CONTENTS

This is a threaded discussion page for the International Stuttering Awareness Day
Online Conference Self Help Group Panel. 

The presenter of the primary paper in this panel has consented to have a personal email address posted here
if you wish raise further questions and/or comments. 

Norbert Leickfeldt - mail@stammer.demon.co.uk 

The other panel members can also be reached through the web page of their organization, listed at
http://www.mnsu.edu/comdis/kuster/support.html 

Fluency Skills and Avoidance Reduction

From: Jaan Pill
Date: 10/3/98
Time: 1:27:41 PM
Remote Name: 134.29.30.79

Comments

I am interested in knowing how other people on the panel got started in their involvement with the self-help
movement. 

In my case I attended a treatment program in Edmonton, Canada (Institute for Stuttering Treatment and
Research) that focused on specified fluency skills and reduction in the avoidance of speaking situations. I
found it quite a challenge to make a psychological adjustment to the fact that, as a result of learning these
particular fluency skills, and a lot of practice in applying those skills, I could now make consistently fluent
presentations to large audiences. That felt strange. I wanted to talk with other people who stutter about the
process of adjusting to fluency in such situations. That's how I became involved with self-help groups. 

Jaan Pill Coordinator, Canadian Association for People who Stutter and ... Chair, Outreach Working Group
of the International Stuttering Association


Re: Fluency Skills and Avoidance Reduction

From: Martine De Vloed
Date: 10/5/98
Time: 1:28:18 PM
Remote Name: 134.29.30.79

Comments

Hi Jaan, 

In 1993 I attended with some other Belgian stutterers a very succesful treatment program in the Netherlands.
The weeks after the treatment we were very euforic. We could almost speak fluently. But as time passed we
began to stutter again. We really needed to come together, to share experience and to practice the method.
That's how the first self-help group in Belgian is founded. Nowadays we come together every 3 weeks and
thank to these meetings I can almost speak fluently and I got a lot of friends. 

Warmly. 

Martine. 

Re: Fluency Skills and Avoidance Reduction

From: Jaan Pill
Date: 10/5/98
Time: 1:28:46 PM
Remote Name: 134.29.30.79

Comments

Hi Martine, 

It is interesting to know of how the self-help in Belgium came to be formed. I am reminded of Marty Jezer's
discussion in his book, Stuttering: A Life Bound Up in Words (BasicBooks: New York, 1997). He talks
about how groups have been formed and how they have evolved. He describes, for example, how the Speak
Easy International group, with chapters in New Jersey, New York City, and parts of New England was
formed. A number of people in New Jersey had been in a program involving "airflow therapy." They broke
away from the program because they wanted to explore wider issues, including attitudes, relationships, and
job issues. 

It's fascinating how different groups get started. It's equally interesting how self-help groups evolve and
change over time. 

All the best, 

Jaan

Re: Fluency Skills and Avoidance Reduction

From: Martine De Vloed
Date: 10/8/98
Time: 1:29:23 PM
Remote Name: 134.29.30.79

Comments

Hi Jaan, 

It is true what you write. A self-help group changes and evolves. People come and stay away, but there is
always "the hard core" or the group. People who are always present and who can motivate other people.
And we have also to break away from one therapy because a program that is good for a few people is not
applicable for everyone. For me it is important to continue with self-help. For example during the summer
holidays we don't have meetings and I feel it. At the end of the holiday me stuttering comes back. I miss the
energy of the group. 

With kind regards. 


Re: Fluency Skills and Avoidance Reduction

From: Jaan Pill
Date: 10/10/98
Time: 1:29:59 PM
Remote Name: 134.29.30.79

Comments

Hi Martine, 

I like the idea of providing an impartial forum for exploring a variety of approaches to stuttering, rather than
being assosciated with one particular approach. The idea of providing an open forum is included, in one
wording or another, in the constitution of the International Stuttering Association, and the constitution of the
International Fluency Association. ELSA, the European League of Stuttering Associations, may have a
similar wording in its constitution; in its meetings, I know they offer such a forum. 

Similarly as s a national organization, CAPS specifies in its constitution that it offers an impartial forum. A
local group that I am involved with, the Stuttering Association of Toronto (SAT) has a similar approach. 

With reference to a related topic, that of the role of speech professionals in self-help groups, I think it may
be useful to speak of a continuum. At one end of the continuum are self-help groups led or controlled by
speech professionals. At the other end of the continuum are self-help groups that explicitly exclude
involvement by speech professionals. Most groups are somewhere in the middle. Hogo Gregory, in a 1997
journal article (Seminars in Speech & Language or a similar title, 1997; 18(4), 401-409)) recommends that
speech professionals should relate to the self-help movement as consultants. 

These points have implications for research about self-help groups, a topic that I'll return to in a future
message. 

All the best, 

Jaan 


DAF and FAF units

From: Gert Reunes
Date: 10/6/98
Time: 1:31:43 PM
Remote Name: 134.29.30.79

Comments

Is there any selfhelp group with experiences on DAF and FAF units??? Please contact vzw.best@skynet.be
Thanks Gert Chairman vzw BeSt


Re: DAF and FAF units

From: Jaan Pill
Date: 10/7/98
Time: 1:32:19 PM
Remote Name: 134.29.30.79

Comments

Gert, 

There has been extensive research about such devices, although I do not know of self-help groups that focus
attention specifically on them. Thomas David Kehoe, who sells such devices through a company that I think
is called Casa Futura Technologies, has written extensively on the subject. A good place to start to find out
about his views, as a person selling such devices, would likely be the Stuttering Home Page. 

Some reports are available on these devices in the Proceedings of the First World Congress on Fluency
Disorders, organized by the International Fluency Association (IFA) in Munich in 1994. More reports on
these devices will also be available in the Proceedings of the Second World Congress on Fluency Disorders
in San Francisco in 1997. The second Proceedings have not yet been published, to my knowledge. The
Journal of Fluency Disorders has abstracts from both of these World Congresses. (The next IFA World
Congress will be in Copenhagen in 2000.) 

The Journal of Fluency Disorders, a journal that is associated with the IFA, and that specializes in stuttering
treatment and research, is a good source for recent research reports about such devices. There is also an
Internet database -- I think it's called Medline -- that one would be able to search for information about
relevant research reports. However, the Journal of Fluency Disorders is not, to my knowledge, on the
Medline list of publications so a search of Journal of Fluency Disorders articles would have to be done
separately, for example at a university library. 

Researchers such as Armson and Kalinowski have written interesting reports on these devices. Marty
Jezer's excellent 1997 book, mentioned in a previous message, also includes an extensive discussion about
DAF-type devices. 

I will send a separate message to you, Gert, with relevant URL and e-mail addresses. 

Jaan Pill, Cooordinator, Canadian Association for People Who Stutter; Chair, ISA Outreach Working
Group.



Re: DAF and FAF units

From: Gert Reunes
Date: 10/11/98
Time: 1:32:56 PM
Remote Name: 134.29.30.79

Comments

Thank you for your reply. I have already contacted Dr. Kalinowski and also casa futura in the past. But here
in Belgium there is no support for such devices... why??? I have had good results with a daf device 25 years
ago, but here no speech therapist works with it, or give information to hard stutterers. So is DAF no good
??? I would like to have responses of people who uses devices alone or in the support groups. 

Greetings Gert 


Re: DAF and FAF units

From: Jaan Pill
Date: 10/12/98
Time: 9:40:24 PM
Remote Name: 207.34.213.244

Comments

Good to know you have contacted Dr. Kalinowski. You may also wish to contact Shamez Kassam, a
member of CAPS, at "S.Kassam - AccessAbility Unlimited" . If I recall
correctly, he had a workshop at CAPS 97, the most recent CAPS national conference, in Vancouver in
August 1997, on the subject of DAF devices. A tape of the workshop is available from an outfit called Audio
Archives or you may be able to get a copy directly from Shamez. 

I was interested to learn that information about DAF devices is not readily available in Belgium. I would not
want to speculate on the reasons, given that I do not know the history of stuttering treatment in Belgium. It's
been my general observation, however, that how stuttering is perceived and conceptualized, and how it is
approached so far as treatment (if any) is concerned, depends on the history of a particular country. I am
aware that in some countries in the world, the teaching of, say, fluency skills, is frowned upon, for reasons,
again, that have to do with the history of how stuttering treatment has been developed in different regions of
the world. 

One of the results of having the Internet, and also international networks such as the International Fluency
Association, the International Stuttering Association, and the European League of Stuttering Associations, is
that an individual in just about any country can find out about treatmeht options all over the world. Although
DAF devices may not have a following in some areas of the world, information about these devices is
available. I am pleased that I can help, in a small way, in your quest for more information about such
products. 

Jaan Pill 


Re: DAF and FAF units

From: Speak Easy Inc.
Date: 10/8/98
Time: 1:33:40 PM
Remote Name: 134.29.30.79

Comments

Gert, 

Speak Easy in our monthly magazine, "Speaking Out," has frequently provided information on fluency
devices. We are emailing you a list of suppliers of different devices.


Happy Stutterer/Stammerer

From: Ira Zimmerman
Date: 10/9/98
Time: 1:34:24 PM
Remote Name: 134.29.30.79

Comments

Other than the USA's National Stuttering Project, does any of the other self-help organizations focus on
making the stutterer feel good about themself even if they continue to have dysfluent speech?


Re: Happy Stutterer/Stammerer

From: Benny Ravid
Date: 10/10/98
Time: 1:34:54 PM
Remote Name: 134.29.30.79

Comments

Yes, we are trying to focus on making the stutterer feel good about himself in the Israeli self help groups.
But, because of this, there are people who say that the self help groups for PWS are actually encouraging the
stuttering/stammeringÉ 


Re: Happy Stutterer/Stammerer

From: Amy Johnson
Date: 10/10/98
Time: 1:35:38 PM
Remote Name: 134.29.30.79

Comments

This is one area that really needs public education -- an understanding that stuttering is not necessarily in the
control of the person who stutters by simple behavior modication or motor skills. One needs to accept his or
her stuttering whether or not he or she is in therapy trying to improve fluency. Especially then. The
interconnectedness of mind and body is so evident in stuttering that the unhappy stutterer will probably
never gain much fluency if that is indeed the goal. I would like to see the public educated to the fact that it is
not necessarily about being happy about stuttering and encouraging it (although that is perfectly acceptable
and a most lovely way to give someone the opportunity to practice patience and acceptance) but that feeling
good about oneself and happy is very necessarily if any true recovery is going to happen


Re: Happy Stutterer/Stammerer

From: Les Anderson
Date: 10/11/98
Time: 1:36:12 PM
Remote Name: 134.29.30.79

Comments

I am sure that most self help groups encourage openess about their stutter. It might be worth other self help
groups efforts to ask for a copy of Canada's, Speak Easy's self help group manual. There is some excellent
material in this manual about how a self help group can achieve helping fellow members to become less self
concsious of their stutter. I feel that all self help groups, especially our national, state or provincial
organizations should encourage this scenario for all local self help group meetings. I think it goes without
saying, we are over a tremendous hurdle once we have accepted, without shame, our stutter. Those who
have accepted in this manner are obligated to help those who are still struggling with there stutter. 

Les Anderson, President, British Columbia Assoc. of People Who Stutter


Re: Happy Stutterer/Stammerer

From: Norbert Lieckfeldt
Date: 10/11/98
Time: 1:36:44 PM
Remote Name: 134.29.30.79

Comments

Ira 

if I may reply with a question - what would the alternative be? Make them feel bad about not achieving
fluency? 

This year, the BSA discussed its Vision/Mission statement. In the end, we choose "A World that
Understands Stammering" over "A World without Stammering", even though the latter had a lot of support. 

However, it was perceived that there was the danger of unintentionally giving the impression that we might
not value stammerers who either a) despite their best efforts have not achieved normal fluency or b) feel
quite comfortable with the level their speech is at the moment and do not see the need to invest a lot of effort
in changing. 

We do not make any value judgments on either the stammerer who will move heaven and earth to reach
fluency, nor on the stammerer who does not mind stammering for the rest of his/her days - and everyone in
between! 

Yours 

Norbert

Re: Happy Stutterer/Stammerer

From: Jaan Pill
Date: 10/12/98
Time: 8:46:31 PM
Remote Name: 207.34.213.244

Comments

Something we have emphasized within CAPS is that even in the best treatment programs, according to
long-term outcome studies, about twenty percent of people who stutter who take such programs do not
achieve long-term gains from the treatment. Some observers may think it's a matter of some people "not
trying hard enough." There is evidence that the reason may, however, have more to do with neurological
funtioning -- with how a person's brain is wired for speech production. Within CAPS we make a point of
welcoming every person who stutters, seeking their input, and welcoming their leadership roles, no matter
what their level of fluency may be. 

Within ISA, an international network of 35 national self-help organizations for people who stutter, there has
been quite a bit of on-line discussion in the past about a distinction between fluency skills and
self-acceptance of being a person who stutters. It's my personal view, and it has been my personal
experience, that acquisition, practice, and transfer of fluency skills and self-acceptance of one's self as a
person who stutters, and a focus on non-avoidance of speaking situations, are all important and relevant and
can all be productively combined in a holistic or integrated approach to stuttering treatment. 

Jaan Pill


Re: Happy Stutterer/Stammerer

From: Les Anderson
Date: 10/16/98
Time: 1:31:47 AM
Remote Name: 209.167.123.233

Comments

Jaan, 

Your point is well put and very true in all aspects. Many, including myself in the past, did not make the
important connection that fluency skill usage alone does not work for all stutterers; no matter how slight or
severe the impediment is. I struggled greatly for five years trying to rely on the fluency skills alone to sustain
my fluency. I spent many hours and days trying different ways to use the skills so my fluency would have
some realization of consistant fluency. It was not until about a 18 to 20 months ago that I just said to hell
with it all and completley accepted the fact that I was going to be dysfluent and that was all there was to it. It
was this complete change in attitude, not towards myself so much but towards my stutter, that changed
everything for me. I no longer get upset if I have a bad day nor do I anguish over the days that the fluency
skills seem to let me down. I know that tomorrow or the next day, things will come together again. We all
accept ourselves in a different light and solve our problems in our own unique way. There are many life long
or past situations that trigger one's speech breakdown and I think most clinical programs recognize this but
do not have the time to dig into every client's past to reveal those triggers to each client. We all have to study
ourselves and deal with our own ghosts (for lack of a better word). For me the answer came overnight, for
others it may take many years and for some it may never happen. 

Les Anderson

Re: Happy Stutterer/Stammerer

From: Jaan Pill
Date: 10/16/98
Time: 2:36:37 PM
Remote Name: 207.81.165.22

Comments

Les, 

I was very interested to read your comments. I have encountered some people who are quite insistent about
the fact that fluency skills are but one part of the picture. Indeed, for some people fluency skills are not part
of the picture at all. 

Self-acceptance of one's self as a person who stutters, and being open with others about the fact that one is
indeed a person who stutters, are clearly important parts of the picture. The personal understanding that you
have gained, and your description of the impact that understanding has had, is really instructive, and
inspiring. I have learned a lot from reading your message. 

Jaan Pill 

FRIENDS

From: Amy Johnson
Date: 10/9/98
Time: 1:37:34 PM
Remote Name: 134.29.30.79

Comments

What a wonderful idea to focus on young people who stutter. And the classroom kit sounds fantastic. Can't
wait until they are available for next year's ISAD! 


All Self-Help Groups

From: Amy Johnson
Date: 10/9/98
Time: 1:38:24 PM
Remote Name: 134.29.30.79

Comments

It is incredible to read what is happening all over the world for people who stutter. In the U.S. we say "If
you stutter you are not alone." This conference certainly proves that to be true. Thanks to all of you for
sharing about your support groups. 

Re: All Self-Help Groups

From: Gert Reunes
Date: 10/11/98
Time: 1:38:57 PM
Remote Name: 134.29.30.79

Comments

Thank YOU Amy for the possibility we have to communicate with the whole world ! Gert Reunes chairman
vzw BeSt Belgium


On line self-help groups

From: Lieven Grommen
Date: 10/11/98
Time: 1:39:33 PM
Remote Name: 134.29.30.79

Comments

What do you think of the value of on-line-self help groups versus the real world self-help group? What is the
real worth of this net-meetings for the PWS ? 


Re: On line self-help groups

From: Gert Reunes
Date: 10/11/98
Time: 1:40:02 PM
Remote Name: 134.29.30.79

Comments

Hello Lieven, 

I think that it brings (the different self help groups ) more together for our struggle/fight against alot of
things. Also it can be the first step to more international power to receive more help from governements and
perhaps W.H.O. For PWS people it can be a + psychological dimention to know that there are people out
there in the whole world who also have the same problems ! 

Best regards Gert Reunes chairman vzw Best Belgium 

Re: On line self-help groups

From: Les Anderson
Date: 10/11/98
Time: 11:56:14 PM
Remote Name: 209.167.123.229

Comments

I feel there is an area for communication between self help groups. There is though, no replacement for
verbal exercises that can be realized at a self help group gathering. We all know that we can read fluently
from dawn to dusk when we are alone; however, when another human enters the scene, our dysfluent
speech behaviour returns. For communication between international groups, online meetings would be a
wonderful thing for us. It will never replace verbal communication however.



Re: On line self-help groups

From: Martine De Vloed
Date: 10/14/98
Time: 6:06:11 PM
Remote Name: 195.238.9.124

Comments

I join Gert and Les in what they are saying about self-help groups on international level. A member of the
board of ISA has written recently : write the truth about what you are feeling deep inside and your friends
will understand and accept this. 

Lieven, it is nice to make acquaintance with somebody of Belgium by email and on the internet-conference.
And I hope to meet you personally on 22 October in Ghent. 

With kind regards. 

Martine.


Re: On line self-help groups

From: Les Anderson
Date: 10/16/98
Time: 1:43:22 AM
Remote Name: 209.167.123.233

Comments

Martine, 

I think we need to accept ourselves first and be able to recognize the truth "in ourselves" before we can write
about it. One cannot explain truthfully what one does not understand. If we can see, believe and accept
ourselves, we as stutterers have made it over a tremendous hurdle.


Re: On line self-help groups

From: Anita S. Blom
Date: 10/22/98
Time: 6:56:25 AM
Remote Name: 130.244.244.115

Comments

It's extremely important to have days and meetings like this to learn from each other, to give each other new
ideas, but also new strenght to continue with the important work to work in self-help groups and to tell
people we're here. Most of us don't use the phone that often, mail is too slow, so Internet meetings are a
perfect way to join hands and help each other. 

Anita S. Blom



NSP's Scholorships

From: Evelyn
Date: 10/11/98
Time: 1:40:41 PM
Remote Name: 134.29.30.79

Comments

I understand that the National Stuttering Project offers scholarships for therapy for stuttering. 

Does NSP or the scholarship winner select the therapy program? What is the basis for the scholarship and
therapy selection? 

Does other support organizations offer similiar scholarships for adults who stutter? For example does BSA
offer scholarships to the David McGuire treatment program in the UK?


Re: NSP's Scholorships

From: Norbert Lieckfeldt
Date: 10/12/98
Time: 9:06:15 AM
Remote Name: 158.152.141.117

Comments

Dear Evelyn 

Many thanks for your question, the answer to which is no, we do not. 

This is a reflection of financial constraints rather than of our attitude to different therapy approaches. 

There is a need out there and we try to point people in the direction of small local charitable trusts who may
be able to fund items like, e.g. travel costs to intensive courses. 

Hope this answers your point 

Yours 

Norbert Lieckfeldt


Re: NSP's Scholorships

From: Annie Bradberry
Date: 10/14/98
Time: 8:49:00 PM
Remote Name: 152.163.206.189

Comments

Dear Evelyn, 

Yes, we have been very fortunate to be able to offer our members scholarships for speech therapy for the
last four years. We have two donors who are responsible for these scholarships and the program is also
selected by the donor. When we advertise the scholarships we list the programs available. The basis for the
scholarship selection and the process is very simple. Working with the donor, we have created a simple
application that is sent to anyone who requests one and the donor along with a committee select the
candidates based on financial need, motivation, outcome expectations, etc. We work closely with the
directors of the programs who have the final say if the applicant and the program match. It is a wonderful
program and I have seen many lives changed. We will be advertising the scholarships in the November issue
of Letting GO


Role of people who don't stutter

From: Judy Kuster
Date: 10/16/98
Time: 6:26:31 PM
Remote Name: 134.29.30.79

Comments

Jeff Shames raised an interesting point in his response to Lee Reeves' paper. What role do people who don't
stutter play in your various self-help groups. 


Re: Role of people who don't stutter

From: Jaan Pill
Date: 10/17/98
Time: 7:36:37 AM
Remote Name: 207.34.213.199

Comments

For the Stuttering Association of Toronto (SAT), which meets at Hart House at the University of Toronto
(for information the contact is Arun Khanna ),the meetings are open to anyone with
an interest in stuttering. That includes relatives and friends of people who stutter, and speech professionals. 

Speech professionals are welcome to attend as observers, and occasionally they assist the group in planning
the content and structure of fluency- skills practice sessions. Occasionally they are invited to make
presentations. In the interests of providing an impartial forum for sharing information about stuttering, and
approaches to dealing with stuttering, within SAT and CAPS (Canadian Association for People Who
Stutter), we specify that we work cooperatively and collaboratively with speech professionals and treatment
clinics, but are independent of them. They are not involved in the running of our groups. 

Jaan Pill

Re: Role of people who don't stutter

From: Norbert Lieckfeldt
Date: 10/17/98
Time: 1:27:56 PM
Remote Name: 194.69.109.232

Comments

The British Stammering Association differentiates between 'Full' and 'Associate' members. Full members
are those who have stammered beyong adolescence or a parent/carer of a stammering child under the age of
16. Everyone else is an Associate member. 

Only Full members have the right to vote in elections to the General Committee (our governing body) and
only Full members can stand in these elections. 

That said, we welcome everyone who is interested in the field of stammering, and our membership consist
of approx. 2/3 Full and 1/3 Associate members. We have very close links with speech and language
theapists, both as a profession and individually. We have a permanent advisory panel of SLTs and
(currently) 2 SLTs are taking part in General Committee meetings in an advisory capacity. 

We are certainly looking into widening our membership base to include teaches, employers, other family
members etc. But the policy of the Association, as it stands at the moment, is decided by Full members only.


Re: Role of people who don't stutter

From: Speak Easy Inc.
Date: 10/17/98
Time: 6:58:20 PM
Remote Name: 207.179.135.82

Comments

Speak Easy's mission statement is to provide information and support to adult stutterers, parents of
stuttering children, professionals in the field, and the general public. That does not leave us much room to
exclude anyone. 

Speak Easy welcomes everyone with an interest in stuttering. 

We are frequently contacted by doctors, teachers, ministers, journalists, parents, relatives, family, and
friends. The articles we publish in our monthly magazine, "Speaking Out," have been submitted by a wide
range of people: stutterers, parents, spouses, therapists, etc. Basically, our goal is to provide information --
good, practical information from a wide assortment of reliable sources. 

Because stutterers have been excluded or penalized by so many areas of society for such a long time, it
would seem the height of folly for us to to exclude others. We should be striving for mutual acceptance,
rather than erecting our own false barriers. We have much more to gain by involving, and thus informing,
everyone with an interest in stuttering. 

Accordingly, people who do not stutter have the opportunity to participate fully in Speak Easy. They are
accepted as full members in our organization, they act as our area and regional contact people, they serve on
our Board of Directors, and also serve on our Executive. 

We feel that stutterers have nothing to gain by reverse discrimination.

Re: Role of people who don't stutter

From: Martine De Vloed
Date: 10/19/98
Time: 7:11:19 PM
Remote Name: 195.238.9.233

Comments

The aim of our national selfhelpgroup is to reach people who stutter. This is only possible by means of
television, radio and newspaper : people who don't stutter. 

We also need people who don't stutter to get sponsorship for our activities. 

A member of the board of our self help organisation is a speech professional who doesn't stutter. 

Martine. 


Re: Role of people who don't stutter

From: 
Date: 10/19/98
Time: 9:38:37 PM
Remote Name: 207.34.226.90

Comments

I have read previous comments with interest. Each person naturally has their own point of view. I would
like to offer some comments that have to do with the larger context within which one can explore diverse
viewpoints about the role of people who don't stutter, especially as they apply to self-help groups. 

Any discussion about non-stutterers and self-help groups will benefit from a definition of what a self-help
group is. The following definition relates to self-help groups of all kinds, not solely those that address
stuttering. The definition is adapted from ones offered by the American Self-Help Clearinghouse and by Self
Help Nottingham, both of which have Web sites. 

A self-help group consists of people who have personal experience of a similar problem or life situation.
Four characteristics make them what they are. First, they involve mutual help. They involve people helping
one another and helping themselves in the process. Secondly, their members typically run the groups. If
professionals are involved, they serve in supplemental roles. Third, they are composed of peers. Fourth,
they are voluntary non-profit organizations. 

When discussing self-help, it is useful to clearly define terms. It has been suggested that a group, whether
called a self-help group, maintenance group, therapy group or anything else, be defined by specifying
whether the group is run by members or by a speech professional. A group can be either client-driven or
clinician-driven depending on who runs it. It is also useful to speak of a continuum. At one end of the
continuum are self-help groups that are heavily influenced by speech professionals. At the other end of the
continuum are groups that explicitly exclude speech professionals. Most groups are somewhere in the
middle. In a 1997 journal article, Hugo Gregory recommends that speech professionals relate to the self-help
movement as consultants. 

All the best, 

Jaan Pill


Research about self-help groups

From: Jaan Pill
Date: 10/21/98
Time: 6:54:21 AM
Remote Name: 207.34.213.207

Comments

Extensive research has been conducted about self-help groups for many conditions of which stuttering is a
sub-group. Studies on "self-help" using controlled-experiment methodology are sometimes actually studies
of clinician-driven support groups, as contrasted to self-help groups (Humphreys & Rappaport, 1994). As
well, a random-assignment method used to avoid self-selection in research subjects may result in distortion
of the research process, since participation in self-help groups is by its nature highly self-selective (Borkman
& Shubert, 1995). Web sites for the National Self-Help Clearinghouse Web and the Mental Health Net offer
overviews of research on self-help topics, including descriptions of research projects collaboratively
designed and conducted by self-help members and professionals. Ramig (1993) offers an overview of
research issues related specifically to self-help groups for people who stutter. Researchers, including
students conducting research for a graduate thesis, can assist groups by sharing research results with them,
once a report has been prepared, rather than contacting groups solely for purposes of data gathering


Thank you Judy!

From: Speak Easy Inc.
Date: 10/22/98
Time: 6:25:00 AM
Remote Name: 198.164.4.40

Comments

Judy, 

You've done an EXTREMELY fanastic and wonderful job of organizaing and maintaining the ISAD Online
Conference. Your tireless hours, expert advice, and boundless good cheer have made this event the success
that it has proven to be. For myself, for Speak Easy Inc. of Canada, and for all participants and visitors,
THANK YOU VERY MUCH! 

Mike


ISAD

From: Anita S. Blom
Date: 10/22/98
Time: 6:51:20 AM
Remote Name: 130.244.244.115

Comments

Wow, what a day. We didn't have time to have a big seminar, but contacted over 300 tv and radio stations
and newspapers: the phone hasn't stopped!!! It was on the first news bulletin this morning and will be on
almost every local station during the day. We really have a tool here. Wipe me up when this day is
over....... Thanks and happy ISAD!!!