Preserved Stories Blog

How to start a self-help group

I began a self-help group for people who stutter in Toronto in 1988. The group, which was called the Stuttering Association of Toronto (SAT), has long since disappeared but other groups I was involved in starting including the Canadian Stuttering Association, the Estonian Stuttering Association, and the International Stuttering Association, continue.

I started a local group in Toronto because I had an interest in comparing notes with other people who stutter. I like to start new things. That is where my skills lie. If I were starting new things now, on behalf of people who stutter, social media would be a key component of my efforts. Face-to-face meetings including conferences would, however, remain as a key element of my community organizing efforts. Social media is great for networking but I don’t see it as a viable substitute for face-to-face meetings. I could be wrong, of course; I’m just sharing a personal opinion based on my experience, which may differ from your own.

I got my start in this area before the days of the Internet, at a time when the introduction of laser printers was a huge improvement over dot matrix printers, which in turn had been a huge improvement over the incredibly noisy daisy wheel printers that were being sold when the first IBM personal computers, equipped without hard drives, turned up on the market, at a price of $5,000.

This was in the days when press releases were sent via Canada Post snail mail; subsequent use of fax machines for the sending of releases was considered a big step forward. Now much media relations work involves social media, and press releases are often called news releases or media releases. As well, headings for news releases just used to state what the subject of the release was; now the heading is typically a declarative sentence seeking to enage the reader even before the text of the release is encountered. Aside from that, the fundamentals of a release appear to remain the same.

For a short while I was spending $1,000 a month on long distance phone charges, because much of the early planning for national conferences for people who stutter, as well as initial planning for the founding of the International Stuttering Association, was done with aid of fax machines along with face-to-face meetings and phone calls. Fax messages were the equivalent of email, before email emerged.

How to start a self-help group

After I had been involved as a volunteer in this area for some years, I was asked by an official of the American Speech-Language-Hearing-Association to prepare a brief online article about how to start a self-help group.

I still get requests for the text of that article; for the convenience of people who like to refer to the article, the text of it reads as follows:

[This is the start of the online text.]

The following overview, dated October 18, 2005, is from an item that Jaan Pill wrote for the website of the American Speech-Language-Hearing Association (ASHA).

I have been involved in the founding of several self-help groups for people who stutter. Here are some suggestions on how to form a group:

  • Spend plenty of time planning for and publicizing the first meeting. At that meeting, choose the date for the next meeting, and dates for meetings for an entire year.
  • Ensure that all members have a sense of ownership of the group. Each person should know that she or he has a meaningful say in decision-making. Such a group is likely to continue long after the founding members have left the scene.
  • Have one person act as leader of the meetings. We have found it useful to have each member lead two or three meetings in a row, if they wish.

Other general tips for a successful support group:

  • Structured meetings have better outcomes than ones lacking a clearly defined purpose.
  • Ensure that every person who wishes to speak will speak roughly the same amount of time at each meeting.
  • Offer an open forum for sharing a wide range of viewpoints, rather than seeking to establish a consensus about how to deal with stuttering.
  • In some groups, members seek to practise their fluency skills after they have completed treatment programs. Elsewhere the focus is on helping each other in whichever way is possible.
  • Don’t expect all members to turn up for each meeting. On average about one-third of total membership will attend a typical meeting.
  • People don’t necessarily attend meetings year after year. After they get what they want from a group, some members will move on to other interests. Others, however, will become involved with volunteer work in this area for the rest of their lives.

[That is the end of the online text.]

If I were starting a group now I’d include a focus on social media

If I were starting a group now, I’d be aware that Stutter Social on the Google Plus platform is a great idea. It enables people who stutter to meet online. If I were starting a self-help group now, I would include that platform along with face-to-face meetings.

As well, the Toronto Stutterers MeetUp Group is also a good concept.

Similar groups exist in other cities. If I were starting a group now I would probably use MeetUp as well. I would be using social media extensively as part of a way to enable people who stutter to compare notes and to work on post-treatment transfer and maintenance of fluency skills (for those individuals who wish to focus on such matters).

An article about self-help and the international scene treats the dynamics of self-help in some depth. Like the article about how to start a group, it refers to an earlier time in the history of the stuttering self-help movement. However, some aspects of organizing of such groups at the local, national, and international levels, perhaps remain the same. If you have any reflections you may wish to share on that topic, please let me know.

It’s useful to know what groups around the world are doing. You can find them online. If I were starting up a new group now I’d probably be reading about what other groups are doing, as people can learn from comparing notes. However, every person starting a group would have their own way of doing things.

I wish you, as a visitor to this page, every success in your own efforts on behalf of people who stutter, and in your efforts to deal with stuttering, if that is a challenge that you are dealing with. I welcome your comments and questions.


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