International Stuttering Association

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Re: Impressive organization, impressive work and a plea for help

From: Jaan Pill
Date: 10/10/01
Time: 10:52:58 PM
Remote Name: 154.20.71.238

Comments

Good to read your message, Gunars.

Thank you for your comments about how the presentation is written. I appreciate your feedback.

It’s wonderful to hear of your earlier initiative. There’s a saying: “If at first you don’t succeed, try, try again.” I think that certainly applies to starting self-help associations.

I’ve learned a lot from observing what didn’t work, as well as from seeing what works.

I like the webpage idea. I believe Benny would be much interested in helping out with a template.

1) Can you see anything wrong with your plan?

No -- can’t see anything wrong with your plan. The part that’s most important is the first step, which is getting started again.

But the website by itself won’t be enough. I would suggest also setting up local self-help groups, in Riga and other cities, and setting up a national self-help association by having a founding conference after some considerable time for planning and publicity.

At the end of this message I have some information about setting up self-help groups. More information (especially about the self-help concept) can be found in an article at www.webcon.net/~caps/jaanarticle.html

I’m not currently in a position to help out with the founding of any national associations, but I would be pleased to share the text of a keynote presentation I’ve made at a couple of conferences in which I talk about various things that I’ve learned over the past 14 years of founding and co-founding several self-help associations (local, national, and international).

Please contact me at jpill@interlog.com if you’d like a copy. In a few words, what I’ve learned is the following:

**********

· Many of our most important projects are too big for one or two people to do on their own.

· In a successful group, each member has a strong sense of ownership of the group.

· It’s good to plan ahead, so that a group will continue to grow long after the founder of the group has moved on to other things.

· A data-oriented approach to gathering information can help us to reach our goals.

· You and I will agree about some things, and disagree about others.

· We need to take care in how we define things, so we can be sure that we’re talking about the same things.

· It’s great to see growth and renewal of any kind.

**********

2) What should and what should not be included in a basic website?

I would leave that question to Benny.

3) Do you as ISA have a template of a webpage in English that could just get translated in Latvian using our alphabet?

Again, Benny could help with this. You might also use FrontPage to copy the structure for a site like the CAPS website, or the ISA website. Or at least that’s what I think you can do, but my knowledge in this area is limited.

4) Do you think that it is within your "Mission" to help me out with advice and maybe with the webpage content and development?

Yes -- it’s within the ISA Mission to assist with this. Benny is on the ISA board of directors. He will be able to ask the board for help with such a project. Just keep on asking him. (Persistence counts in this business, as in any other.)

*************

By way of a few other bits of advice, below is an item from the CAPS website about how to start and run a group. These are concepts that I’ve found helpful in founding or co-founding a number of groups. Of course, some things that apply in the case of CAPS won’t necessarily apply or be relevant in Latvia, especially right now, as each country’s (and world region's) history and culture will have a bearing on how stuttering is approached, and how groups are organized. Anyway, here’s what’s on the CAPS site:

How to start and run a self-help group

How does one go about initiating a self-help group? In our work with CAPS and other groups, we have often been asked this question. Some good suggestions are available from the National Stuttering Association and the British Stammering Association. In addition, CAPS have suggested the following points for consideration:

1. It is useful to schedule the dates of meetings for the entire year. Send out a newsletter to publicize the schedule and report on meetings. It is also a good idea to have a person call members to remind them of meetings. In fact, it is a good idea to have members call each other on the phone between meetings or even to arrange for conference calls, by phone or Internet video, as a way to practice speech skills and keep in touch.

We suggest that the group be open to anyone who has an interest in stuttering, including parents who wish to attend with their adolescents.

2. Ensure that all members have a sense of 'ownership' of the group, allowing each member to feel it is 'their' group, and that their ideas and input are fully taken into account when the group determines how it will operate. This will help to ensure that the group survives after the founding members are not active.

3. Although it may initially be necessary to meet in members' homes, it would be more convenient to arrange for a permanent meeting place. It is often possible to arrange for meeting space at local Universities or Clinics. This type of arrangement can lead to a variety of innovations to the standard meeting including changing the meeting room to avoid automatic fluency as a response to the setting.

4. It is useful to have one person perform the role of official leader or coordinator of the group meetings, while all of the members have an equal voice in the running of the group.

We have found it useful to have each member lead two or three meetings in a row. In this way everyone gets practice in a leadership role and is also able to organize meetings in the way they think will work best. Often, a person who has run meetings previously will help the next leader with organizing of the next meeting.

5. From the start, we adopted the principle that every person will speak roughly the same amount of time at each meeting. That is part of the process of establishing that all members have ownership of the group.

It is also our policy that abusive comments or statements are not tolerated, in order to establish a feeling of safety within the group.

6. A typical meeting begins with an optional practice session of about 30 minutes. Because we have people who have taken different forms of treatment, as well as people who have not had treatment, we have found it useful to have a kind of 'generic' practice instead of one based upon a particular program.

We begin with a group warm-up which gradually increases the length, complexity and rate of speech in a reading task.

Following this, a person who has been through a treatment program may conduct a brief 'mini-lesson on a technical aspect of the practice routine - e.g., on the need to let out a bit of breath before starting voicing. Please understand that we do not claim to offer therapy and encourage people to explore all treatment options available to them without bias.

While our Toronto group is run entirely by people who stutter, we welcome speech-language pathologists who would like to attend meetings as observers, or who would like to collaborate with us in organizing of practice sessions. It is our policy, however, to administer our group without direct input from speech professionals.

7. Although being monitored is optional, we identify the speech skills each person would like to have monitored at the start of each meeting. Each person in the group receives index cards with the skills being monitored on them. If the speaker does not use his identified target or fluency skill, then everyone waves their cards as a reminder. That is called 'getting flagged' for not using the skill. Monitoring can take place in unstructured speaking situations including the coffee break.

8. Although each participant is invited to talk about how the past few weeks have been in terms of their speech, it is not required that everyone speak.

9. The leader for the day then introduces structured activities. A typical activity might involve 'table topics.' One of my favorite activities, if I am a leader, is to choose words at random from a newspaper, or out of my head, and write down each word on a piece of paper. Then when a person’s turn comes to speak, they pick up a card and speaks for (say) three minutes on that topic.

We might then go around the room and ask for comments or question from each participant, with an emphasis on positive comments. Following this, the person who spoke typically talks about how it felt to make the presentation, and reflects on the comments from all the listeners.

10. At other times we might have debates, or informal, spontaneous discussions where people have to interrupt to take a talking turn. Even in these discussions, however, the leader would typically ensure that everyone has the opportunity to speak.

11. Some groups use Speaking Circles at meetings. The National Stuttering Association (NSA) has more information about this format, which has also been used successfully in Britain. Some of the benefits are that each person gets to speak for an extended length of time at each meeting, about something meaningful to them

It has been our experience that meeting which are structured work better than ones that do not have any structure at all..

12. It is been my experience that it is important for volunteers to maintain balance in their lives, so that they attend to their personal lives, their careers, and their volunteer work. This requires skills related to time management. It is important that individual members have a strong sense of ownership of the group in order to insure that the necessary work will be shared by the majority of members.

Readers are welcome to copy, adapt, and distribute these guidelines. If the guidelines are distributed, we request that a statement would appear in the text indicating that CAPS has developed them for use by any groups who have an interest in using them.


Last changed: September 12, 2005