How to start a self-help group

For about 15 years from 1988 until about 2003, I was intensively and actively involved at the local, national, and international levels in voluntary community self-organizing work on behalf of people who stutter.

After that, I became involved with land use planning issues in Long Branch, the neighbourhood in Toronto where we lived from 1997 until 2018, after which we moved to Stratford. I set up a website in 2011.

Since 2003 I’ve still been involved with some volunteer work on behalf of people who stutter but most of my focus has been on blogging, local history, and sharing information about topics such as how to prepare for committee of adjustment hearings.

Much of what I know about community organizing – or to be more precise, about community self-organizing – and about media relations I’ve learned through my early volunteer work involving the launch of nonprofit organizations, staging of national conferences, and public education related to stuttering.

Leadership succession and the value of evidence

A key thing that I learned early on is that it’s important to plan for leadership succession when forming nonprofit organizations. As a result of a focus on leadership succession, many organizations that I helped to launch years ago continue to thrive, because leadership succession is built into the DNA – built into the organizational culture – of such organizations.

I”ve also learned of the value of evidence, and evidence-based practice, in all realms of life. It was in the early years of my volunteer work that I learned of a sharp distinction between data-based approaches to dealing with stuttering, as opposed to approaches that tended to ignore, or minimize, the value of data.

Learning about the value of data – of systematically acquired evidence – was an eye-opening experience for me. It’s among the most important things that I learned during that particular phase of volunteer work focusing on community self-organizing.

I achieved good control over my own stuttering at a three-week clinic in Edmonton in 1987. For many years after that, I worked on a daily basis on maintenance of my fluency skills.

I began to write news releases, make presentations, and have appeared in countless press, radio, and TV interviews during the years I was active in this form of volunteer work. I have also coached other people who stutter to prepare for a wide range of media interviews.

I remain active in such volunteer work to some extent. In September 2018, for example, I was keynote speaker at a symposium for people who stutter in the Scandinavian countries. The event was held in Tallinn, Estonia. As well, I continue to share information about research focusing on what changes in public attitudes occur, or do not occur, in response to particular approaches aimed at countering stereotypes regarding stuttering, and regarding people who stutter.

The following text dates from 2012; I’ve made some minor revisions such as removing any links that are no longer live links plus some revisions to the text.

Canadian Stuttering Association, Estonian Stuttering Association, and International Stuttering Association

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 to do important work.

I also did extensive international networking, among national stuttering associations worldwide, through correspondence via Canada Post, on behalf of the International Fluency Association.

I have been keen to ensure, working with like-minded individuals, that people who stutter would everywhere have the opportunity to speak out on their own behalf.

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, smartphones, high-resolution digital cameras, and widespread use of digital audio recorders. It was 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.

In those days, the idea of spending vast sums of money to add 5 megabytes of space on a hard drive on a desktop computer was considered outlandish by some observers. People would ask, “What would anybody do with 5 MB of data on a hard drive? Who would need that much space?” It was a good question, at the time.

This was in the days when press releases were sent via Canada; 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.

I used to send out hundreds of news releases via Canada Post at a time. I knew that if one or two percent of media outlets got back in touch, I would be successful in reaching out to the wider public via media interviews.

The point of a good news release is that it sets up an exchange between a media outlet and the media contact person sending out the news release. The reporter gets a good story – has the opportunity to say something that is new in some way, something that is newsworthy. The organization sending out the news release gets to reach out to the wider public.

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.