ISA
International Stuttering Association

A world that understands stuttering

Making Groups Work

For adults who stutter the path to recovery is often long and difficult (as with any chronic behavioural problem)

 It helps to develop a support network

• Information from books, internet etc.
• Friends and family
• Speech Pathologist
• Self help/ Support group

Strength of group

• Learn from others
• Practice and develop skills
• Gain encouragement
• Gain validation

Weakness of group

• Dependent on Leadership skills

• Subject to personality clashes /negative group dynamics

Types of Groups

• Self Help – share experiential knowledge, role play

• Support – controlled by professional

Self Help Groups –developmental stages and classification

1.  victim
2.  survivor
3.  mature – either Dogmatists
   or  THRIVERS (continue to embrace new knowledge and grow)

What  YOU can do to ensure your group is a THRIVER

1. Make your contribution to group
2. Listen well
3. Encourage development of others
4. If you have a problem with someone –deal with that person directly           (don’t complain to someone else)
5. Continue to work on your own goals
   (remember its easier to change the world than change yourself)
6.  When you have achieved your goals move on: allow development of others     

What the GROUP can do to ensure it is a THRIVER

• Appoint leadership committee (President, Vice –President, Treasurer, Secretary.)
• Set annual goals
• Welcome and encourage new members (advertise, networking)
• Set up mentor system
• Have some separate social gatherings/ events  (HAVE FUN)

How to make meeting work

• Notify members of agenda prior to meeting
• Set and rotate roles for each meeting (Chairman, Evaluators, Time keeper, Minutes secretary.)

 Suggestions for Exercises within Meeting

• Discussion –determine individual hierarchies of difficulty.
   
• Talk about week/fortnight – (time limit )
   
• Talk about new information –therapy ideas
   
• Reading –prose or poetry
   
• Impromptu speaking – e.g.. government policy, environment, sports etc
   
• Debates e.g.. “that fame is the spur”, “that he who hesitates is lost” etc
   
• Joke telling
   
• Prepared Speeches – 5-7 minutes, (consider Toastmasters Inc. affiliation)

• Evaluations – Validation as successful Communicators is VITAL for PWS. (Members evaluate others using a  Commend Recommend Commend sandwich –e.g.. “Your enthusiasm was infectious and you spoke with obvious sincerity (COMMEND). My point of recommendation is to hold eye contact for 5-10 seconds rather than sweep the room or read with head down (RECOMMEND). In my view the strength of your speech was your clarity and vocal variety. (COMMEND)”  

• "Finishing words or sentences for another person":  Please vote.

Stuttering: The problem *

Personal stories about the devastation that stuttering wreaks on the lives of people who stutter are, unfortunately, all too common. The social penalties that people who stutter experience as a result of their stuttering, are often life-altering.

Stuttering: Handicap or not?

• Stuttering is a disorder which often hinders a person in many aspects of his/her life.
  
• People who stutter are often discriminated against.
  
• They often cannot go into normal social interactions.
  
• From time immemorial - they have often been misjudged as fools, psychopaths and figures of ridicule in our society. Literature, film, newspaper and television repeatedly take up and even intensify these wrong, one-sided and distorted pictures (Benecken, 1996).
  
• Jokes about stuttering are rife.
  
• Parents, teachers and employers often do not know how to react to or deal with stuttering.
  
• School is often an extremely negative experience for children who stutter and can often be
  the worst time of their life.
  
• People who stutter sometimes attempt, or even commit suicide.

* From Thomas Krall Keynote speech given in the 3rd IFA
congress in Nighborg, Denmark, August 2000

Our experience with both self-help and therapy is that stuttering can be effectively managed and treated. However, stuttering management is a long term challenge and requires hard work, time and commitment.
There are so many badly qualified therapists, and many charlatans pepper the therapy scene. We need more competent, well-qualified stuttering specialists and more public education about current therapy approaches, especially relating to early childhood.
The following thesis is under discussion in many self-help groups:

To control stuttering and to maintain fluency is often a similar life experience as to learn a musical instrument, sports or a second language, and involves an entire lifetime of maintaining these techniques.

The best method of stuttering therapy remains a controversial issue. Prof. Fiedler, Germany, said in 1993:

"Every method helps".

This is a provocative but very interesting statement. "Every method helps" is just as true as: Every school teacher can teach, every tennis trainer and every piano teacher can give lessons. This thesis provokes many questions, for example:

• What is the best method for me?
  
• Who is a very good teacher for me?
  
• When I should take lessons? At the age of 3, 15, or 55?
  
• How can I identify a serious method and a serious trainer?
  
• What is my goal related to recovery from stuttering? Am I content with a little progress on the scale from 1 to 10 or do I want perfect fluency?
  
• How strong is my will, my staying power to practice the selected method possibly for years, or indeed my whole life?
  
• Who can best help me deal with my negative thoughts and feelings and help me become a more confident speaker?
  
• Who can help me in finding my personal way as best as possible?
  

It is good to know that we have relatively good answers for most of those questions, today. One thing is certain: From the perspective of people who stutter, it is important to have access to information which allows for good decisions. It is very helpful to contact the local self-help groups and the national associations for people who stutter, or to look at the homepages of those groups, or at the Stuttering Home Page.

* From Thomas Krall Keynote speech given in the 3rd IFA
congress in Nighborg, Denmark, August 2000

The theme of stuttering as a handicap raises the very unpleasant topic of the fate of those people who stuttered during the time of the holocaust. The theme of the holocaust is once again in the media. How far did the nazis take their prejudice? The Nazi regime in Germany killed Jews, other ethnic groups and perceived public enemies during Second World War. They also either killed people who were physically and mentally handicapped or mentally ill, or abused them for experimental medicine. Both adults and children. We want to know the truth, before there are no more survivors from that time, and to tell the truth.
We feel compelled to ask whether any survivor knows what the fate was of those adults and children who stuttered? Should we look after this question more intensively and what should we do when we have the information?

* From Thomas Krall Keynote speech given in the 3rd IFA
congress in Nighborg, Denmark, August 2000