Volunteer work sometimes involves community self-organizing

Since 1988, I’ve been involved in volunteer efforts aimed at bringing people together in pursuit of shared interests. This post shares some things I have learned.

I’ve learned some basic principles, derived from the power of the written and spoken word, and from volunteer work involving media relations and public relations. Like many people, I’ve helped to speak and write many organizations into existence, in coordination with large numbers of like-minded people.

On occasion, I’ve worked with fellow residents to influence land use decision making – giving rise to outcomes that serve the interests of everyday residents – in South Etobicoke, a stretch of neighbourhoods in Toronto where we used to live. Among other things, a decade ago we worked together to keep a public school in public hands rather than seeing the property demolished. More recently, we’ve saved a heritage house from being partially demolished.

What I seek to share, by way of basic principles, is not some theory about power dynamics. Rather, I’m thinking of a general way of seeing things – of looking at things – on a case by case basis. I look at volunteer projects quite differently now, as compared to thirty years ago.

For example, I’m even less inclined to push for certain things – to advocate specifically about certain things that I personally felt strongly about – than was the case when I got started with community self-organizing. I’ve always been keen to listen closely, but I now listen, observe, and reflect even more closely.

During the first half of the above-noted 33 years, as a volunteer my focus was on launching of self-help associations for people who stutter. In the subsequent 18 years, my focus has been more on land use decision making. During the past 18 years, a key thing I’ve learned is that sometimes power speaks its own language, whereby up is down, and big is small.

It’s an intrinsic property of power (and, in fact, the pursuit of power) that, sometimes, such reversals in standard language usage can occur. I found it most intriguing, the first time I became aware – in a heightened kind of way – of this form of language usage. It has since occurred to me that I had not previously thought about occasions and contexts, going back many years, where the same usage was at play. Which brings to mind that many people have read my posts over the years about scams and scamming.

Toronto in context of geography

During its early years, a non-profit organization that I co-founded, the Canadian Stuttering Association (CSA), made a concerted effort to establish a national presence by venturing outside of Toronto, where I was living at the time. That was a good thing, albeit I have noted that the love/hate relationship with Toronto – on the part of people living anywhere else in Canada, such as in Alberta or British Columbia – was alive with a particular vehemence in those years. What is the story now? Is the same love/hate relationship still in place? I do not know. It’s been many years since I was involved with leadership of the CSA, although I do continue as a member of its (non-voting) advisory board.

I became involved in community self-organizing in 1988 in Toronto. By 1989, I was involved in the organizing of Canada’s first national conference for people who stutter which took place in Banff, Alberta in 1991. We chose Banff because we adamantly didn’t want to start off with a national conference that was located in Toronto. The Banff conference led to founding of the CSA, an organization for which I served as the first national coordinator.

Originally the organization was called the Canadian Association for People Who Stutter (CAPS). However in subsequent years the shorter name, which is more convenient for reporters to work with, was chosen.

We chose to say the leader of the CSA would be its national coordinator. That’s because we envisioned a flat-hierarchy structure, when we founded the association. To say that the national leader of the organization was its president would make sense, if it had been set up as a strongly hierarchical organization (a type of organization that can work well enough, of course, in other situations and circumstances).

The CSA is a well-run association; it’s a registered charity with a sizeable budget, and it does all of its work entirely with volunteer labour. It does not place a lot of stress on a sense of hierarchy; the voice of every volunteer (I say this based on anecdotal observations going back many years) is typically taken into account.

The CSA has also made it a point that, as with other organizations, great care is taken to ensure that elections are conducted in such a way that a person, not directly involved with the election outcome, and acceptable to all candidates, is entrusted with counting of the ballots. This kind of attention to detail – ensuring that elections are fair both in actuality and appearance – matters hugely.

From 1989 until the early 2000s, I was involved in organizing of the CSA’s national conferences, which at that time took place once every two years in cities across Canada.

The population of Toronto and the surrounding region is larger than the population of some Canadian provinces. With CSA conferences over the years (by the early 2000s) it was becoming clear that where there’s a significant concentration of population, as in the Greater Toronto Area (GTA), it follows that conferences at such locations were going to get a good turnout. In contrast, turnout at smaller cities across Canada could at times be very small. I refer, that is, to events in the days when people actually met face to face, as contrasted to the virtual conferences which are now the norm.

At the same time, a Toronto-centric approach, for an organization such as the CSA, has drawbacks because Toronto’s perspective on any given aspect of reality is by no means invariably the best possible one available.

By way of example, some of the greatest Canadian contributions to stuttering treatment and research over the past half-century have been made in smaller cities in Canada, and not in Toronto. Toronto in my experience is at times better at its own public relations efforts, than it is in demonstrating that its reality matches the city’a rhetoric.

International Stuttering Association

The Canadian Stuttering Association has also been (and continues to be) active at the international level. Recently I’ve been asked about the early years of the International Stuttering Association (ISA), of which I’m a co-founder.

Thomas Krall of Germany and I did the initial organizing work that led to launch of the ISA. I was chair of the International Fluency Association (IFA) support groups and consumer affairs committee at the time. The IFA had been set up with the idea of bringing together, at the international level, speech pathologists, researchers, and people who stutter.

My sense has been that, valuable as the International Fluency Association (IFA) was (and continues to be), people who stutter were not equal partners in the running of it. For that reason I could see that it would also be good to have an international association that spoke at the international level specifically on behalf of people who stutter. That’s what led me to become involved in founding of the International Stuttering Association (ISA).

As a key part of the process of founding the association, a professional-quality survey (designed by a survey professional, Rick Randall of Toronto, who also designed the surveys used extensively in the early years of the CSA) was sent out to stuttering self-help organizations worldwide.

From the survey it was clear there was a worldwide consensus that such an organization made sense. The organization was launched at a congress in Sweden in 1995. During the first several years, before the ISA board was set up, a management committee ran the ISA. In those years, I served as an adviser to the management committee. Mainly, I advised on the interpretation of the ISA constitution.

Given that I was solely an adviser, the interpretation was not in my hands. I think in some cases, it’s good to get the general membership of an organization involved in decisions related to interpretation of constitutions, rather than leaving the matter in the hands of a given board of directors.

I think it’s a great idea, as well, for any board of directors, for any organization, to be thoroughly familiar with the intent and wording of its constitution, and to be capable of revisiting the document regularly, to determine whether key aspects of it require revision, particularly from the perspective of its general membership. Any revision is a major thing, in my view; the best approach by far (and this provision is typically written into constitutions) is to ensure that the general membership signs off on any changes.

Launch of the ISA

An article posted online in 2001 outlines the launch of the ISA:

International Stuttering Association

The authors are Jaan Pill of Canada; Benny Ravid of Israel; Stefan Hoffmann and Thomas Krall of Germany; Mark Irwin of Australia; Martine De Vloed of Belgium; and Mel Hoffman of the United States.

An excerpt from the article reads:


Founded in 1995, the International Stuttering Association (ISA) is a not-for-profit, international umbrella association made up primarily of national self-help associations for people who stutter. This association seeks to provide a means whereby the voices of people who stutter can be heard at the international level.

Representatives of several national self-help associations had talked about setting up such an organization at a meeting in San Francisco in 1992 at the Third World Congress of People Who Stutter. Previous World Congresses were held in Kyoto, Japan in 1986 and in Cologne, Germany in 1989.

Discussions among national self-help associations in 1993 and a worldwide survey in 1994 led to creation of a draft version of the ISA constitution. This constitution was refined and ratified at the first ISA membership meeting in Linköping, Sweden in July 1995, a day before the Fourth World Congress of People Who Stutter.

Further changes in the structure of ISA were agreed to at an ISA membership meeting at the Fifth World Congress in South Africa in July 1998.

The most recent version of the ISA constitution – which you can find on the ISA website at https://www.isastutter.org – was ratified at an ISA membership meeting in July 2001 just before the Sixth World Congress of People Who Stutter in Ghent, Belgium.

ISA constitution

The ISA website features the 2001 constitution:

Constitution as ratified at the ISA membership meeting, Ghent, Belgium, July 23, 2001

From my perspective as an organizer, two things in the launch of the International Stuttering Association were key. First, ISA as an organization positions itself as providing an impartial forum for sharing of information, with this concept being written into the ISA constitution, and with the constitution being developed in close consultation with member organizations.

Secondly, leadership succession is clearly specified in the ISA constitution, to ensure sustainability of the organization.

I’m also co-founder of the Estonian Stuttering Association. I find it most inspiring to know that the current ISA board is keen to learn about the origins of the ISA. Such keenness warrants celebration. It underlines the fact that leadership succession is working well as new generations of leaders emerge.

ISA disclaimer

Pages at the ISA website feature a disclaimer, which I had a hand in writing during the early years of the association; the wording reads:

ISA Disclaimer

In keeping with our mission of providing an open forum for the exchange of extensive and thought-provoking information about stuttering, the ISA Web site features links to a wide range of external sites. In offering such links, ISA does not take responsibility for the contents of external sites. Nor does ISA endorse any particular approach to dealing with stuttering.

As people who stutter, we are potential consumers of many treatment services and other programs, including ones from people who are not speech-language pathologists. As consumers, it is in our interests to look closely at the information that is out there and to keep in mind the concept of “Consumer Beware.”

Self-help and the international scene: highlights from 2003

If you do a Google search for “History of the International Stuttering Association Jaan Pill” you will find the above-noted history of the ISA’s early years plus an article in which dynamics of international contacts among self-help organizations are discussed:

Self-help and the international scene

The following excerpt, based on a presentation in 2003, outlines how I became involved with the founding of self-help associations:

Growth and renewal

It is wonderful to see growth and renewal of any kind. Some programs appear to stay the same while some change continuously. I support the concept that speech-pathology students, when first entering the stuttering treatment field, would be introduced in some practical way to the process of ongoing updating of treatment programs, and would not be told that some program, which has not been changed for thirty years, represents the state of the art when it comes to stuttering treatment.

I became involved with volunteer work entirely by accident. I like to say that the reason why everything worked out so well for me was that I had no idea what I was getting into. The story began in July 1987, when I attended the three-week Comprehensive Stuttering Program developed by Einer Boberg and Deborah Kully at the Institute for Stuttering Treatment and Research in Edmonton, Canada. At the Edmonton clinic I learned to speak in a new way, after many decades of moderate to severe stuttering. During severe stuttering, I at times could not make any sounds out at all. I like to say I learned fluency skills as a second language.

After I had learned those skills, I began to make presentations to large audiences. This was something I was unable to do before [with one exception: in high school, I made a series of speeches, after endless rehearsals at home, which enabled me to be elected as president of the school’s student council]. But I found it hard to adjust, psychologically, to the fact I could now engage in public speaking. Whenever I made a presentation, a voice inside would say, “You’re not supposed to be able to do this. You’re supposed to fall flat on your face.” I tried talking about this with my non-stuttering friends, but they could not understand the problem. In the end I decided that, to help myself adjust to this new level of fluency, I needed to compare notes with others who stutter.

In order to meet other people who stutter, I formed a self-help group, the Stuttering Association of Toronto, in 1988. In 1990, I delivered a series of lectures in Estonia (in Estonian, my native language) describing Western approaches to stuttering treatment. That led to the founding of the Estonian Association of People Who Stutter in 1993. In 1991, I assisted in the founding of the Canadian Association for People Who Stutter [now named the Canadian Stuttering Association]. Around that time, I also served as chair of the IFA support groups and consumer affairs committee. That position enabled me to establish contacts with many of the leaders of national self-help associations around the world.

In 1995, acting on my belief that people who stutter need to speak on their own behalf at the international level, I assisted in founding of the International Stuttering Association and have maintained a strong interest in the development, revision, and interpretation of its constitution. In recent years, as a member of the ISA outreach working group, I have offered consultation for people involved in the founding of national self-help associations in African countries including Burkina Faso, Cameroon, and Uganda. I am also a member of the ISA advisory board, and am the official ISA spokesperson. However I am not speaking in that capacity in this paper. My comments are my own, and do not necessarily represent the views of any self-help association.

Einer Boberg played a key role in the launching of my career as a volunteer (Pill, 1998). He arranged a meeting between self-help groups from Toronto and Edmonton, which began the planning process for the first national conference of people who stutter in Canada. He suggested Banff, Alberta as a site for the conference, which was finally staged in that location in August 1991. It also happened that many of the co-founders of CAPS were graduates of the ISTAR program.

For this excerpt, I’ve chosen my own story because I know from experience that abstract dissertations about power dynamics are not going to fly with a general audience.

Current questions: International Stuttering Association

When ISA was formed, it included ELSA – the European League of Stuttering Associations – among its members. Now, there’s another international organization called Stamily that’s been formed. There’s also another new organization on the scene, the recently formed World Stuttering Network (WSN).

Two questions:

1. Should these organizations be allowed to become members of ISA?

2. Should a person be allowed to serve on the board of directors of both international organizations simultaneously?

These are interesting questions. If you are reading this post and have some experience in these areas, let us know what you think!

An informal, unnamed network of international stuttering associations is already in place

A basic point that is made in the above-noted “self-help and the international scene” article is that an informal network of international associations is already in place.

The article, based on a keynote presentation at the 2003 International Fluency Association World Congress in Montreal, notes that ISA, IFA, and ELSA were, by the year 2003, already coordinating activities at an informal level.

By way of example, steps were being taken to talk back and forth to ensure major international conferences or congresses were not scheduled to take place at the same time.

The key thing I believe is a capacity to listen and learn. When it’s known that grassroots input (and a culture of reaching out to membership at the grassroots level) and continuous improvement are strongly at play, we are on the right track. At least, that’s one person’s opinion, for whatever value it may have.

With regard to the current status of stuttering self-help at the international level, I am impressed with the fact the Canadian Stuttering Association is actively engaged in planning for the next collaborative world congress, involving the International Stuttering Association, the International Fluency Association, and the International Cluttering Association. It’s good to see the three international bodies working together to stage a single combined event, rather than three separate ones.

[By way of an update: The collaborative world conference has, as I understand from a reliable source, been officially postponed until 2022 when it will be held in Montreal, possibly at the end of May 2022. Additionally, the next ISA world conference is slated for Liverpool, Britain in August, 2022.]

Media relations

I personally don’t like to see a situation where, at the national level, a self-help association for people who stutter serves as a mouthpiece for particular speech professionals and researchers.

At the international level as well, I think it’s important that people who stutter speak in their own voice, on their own behalf.

I also think it’s important, when international associations speak on behalf of people who stutter, that they express points of view on which there is a general consensus – among the vast numbers of people who stutter – on behalf of whom they purport to speak.

Otherwise, from a public relations and media relations point of view, their communications do not serve a useful purpose.

Building trust among speech professionals, researchers, and people who stutter is key. Based on my anecdotal experience, I believe it’s feasible to address this challenge with a high degree of success and effectiveness.

I believe the key to building a successful form of collaboration is pretty simple: All parties to a collaborative effort need to have an equal place at the table, and each needs to speak in its own voice, on behalf of its own unique interests.

3 replies
  1. Jaan Pill
    Jaan Pill says:

    I can add a note by way of a comment. Rather than adding such a comment to the text above, it’s better, I think, (as otherwise with endless additions a text soon gets bloated) to just add this as a note.

    Within the CSA, in my experience over the past thirty years, first in a leadership capacity and later more as an observer on the sidelines, the organization does not put a lot of emphasis on official titles in its everyday activities. That is, input from all sources is closely taken into account, within the parameters of an informal exchange of views. In my experience, there’s much to be said for such an approach.

    I want to add that when dealing with outside agencies, such as with regard to annual reports related, say, to the organization’s charitable status, the CSA is conscious of addressing official requirements in a highly organized, formal manner. The person entrusted with such matters is in each case aware that formality, with regard to officially required annual tasks, is imperative.

    As well, when conferences and events are organized, requirements are met in an organized, efficient manner. As an organizer I was always aware, for example, that if a given key volunteer task was not completed by a specified date by a given individual, then a backup plan was in place to ensure someone else stepped in at once to get the task completed.

    Input from a wide range of sources is taken into account and the decision making runs smoothly. Such matters don’t require a strong emphasis on job titles. Instead, what is required is a culture of collaboration, and the sense that input from a wide range of sources is highly beneficial.

  2. Jaan Pill
    Jaan Pill says:

    My wife May Jolliffe has mentioned a point that is good to underline, in keeping with my interest in listening closely.

    She has mentioned that, when she first met me in the late 1970s at the Snowflake Parent-Child Centre, which was in operation at that time on McCaul Street south of College Street near Queen’s Park in Toronto, she was very impressed with me as an individual, and the fact that I stuttered did not for a moment get in the way of that impression. She has also noted that, much of the time, it was not evident that I stuttered.

    That’s a point well worth noting. My stuttering in those days was very variable. Sometimes, I could not get out any words at all. At other times, people did not get a sense that I stuttered, at all.

    I believe I had learned from an article in the Varsity, the University of Toronto student newspaper, that Snowflake (a parent-cooperative infant day care centre) had an opening for a substitute teacher. I remember standing on the sidewalk at 228 McCaul Street, where the day care centre was located, wondering of I should walk in through the door. An inner voice said, “You walk in, right now!”

    Through a person I met while at Snowflake a few years later, I learned about the opportunity to do supply teaching at a school board, in operation across Metropolitan Toronto in those years, devoted to the education of severely handicapped students. Through that connection, I eventually got my Ontario Teacher’s Certificate and became involved with public school teaching. Before that I had been getting by with relatively low-paying jobs such as truck driving, construction labour, and part-time freelance writing. From all of these low-paying jobs, I learned many things that I otherwise would not have learned. For that reason, I’m really pleased that I was involved in such lines of work in those years, before I became a public school teacher, a career from which I retired in 2006.

    A few years later, once I had launched my career as a teacher, I was living at an apartment building across from a school where I was now teaching, with the same school board. I didn’t like the owners of the building. A neighbour across the hall, after she had finished reading the Toronto Star one day, gave me her copy of the paper, so that I could read classified ads in search of another apartment. (In the pre-internet days, newspapers were a key resource, if you were looking for an apartment to rent.) That day, I came across a brief article that changed the trajectory of my life, and which a year later launched me on my career as a volunteer. I’ve told that story many times, in many places.

    The Toronto Star article of May 4, 1987, that I read, described a speech clinic in Edmonton, the Institute for Stuttering Treatment and Research (ISTAR, for short), which had been opened in 1986 by Einer Boberg, a speech professional who stuttered and his colleague Deborah Kully.

    I attended the ISTAR clinic in July 1987. When I got back I began to make fluent presentations to large audiences. Each time I gave such a speech, however, an inner voice would say, “You’re not supposed to be able to do this. You should be falling flat on your face.” In September 1988, after two months of planning, I launched the Stuttering Association of Toronto (SAT), because I sensed that, if I compare notes with other people who stutter, I could deal with this bothersome inner voice.

    Indeed, the SAT group enabled me to adjust to my new level of fluency. I worked at consolidation of my fluency skills by practising them every day and consciously applying them each time I spoke. For four years and four months, I followed a daily, structured program aimed at ensuring I could generalize the fluency skills, learned at the three-week Edmonton speech clinic, to everyday speaking situations. I was very focused and disciplined about this. I knew that otherwise, my newly acquired skills would fly out the window.

    In 1989, Einer Boberg travelled to Toronto on a sabbatical from the University of Alberta. He suggested that SAT and the Alberta Stutterers Association (ASA) get together to stage a first-ever national conference for people who stutter. I became actively involved in the subsequent two-year planning process. The conference, which took place in August 1991 in Banff, Alberta, led directly to the launch of what is now called the Canadian Stuttering Association. In those years I was also involved in the launch (in 1993) of the Estonian Association of People Who Stutter and (in 1995) the International Stuttering Association.

    I like to read about the topic of serendipity, as I have encountered many instances of serendipity – of things coming together in unexpected ways – over the years as I have described. A book I’ve found of interest about this topic is entitled: The Travels and Adventures of Serendipity: A Study in Historical Semantics and the Sociology of Science (2004). There are many books at the Toronto Public Library dealing with this interesting topic.

    The first name for the national association in Canada was the Canadian Association for People Who Stutter. That made for a catchy acronym – CAPS – but the title was awkward because of its length, when it came to media relations. In the early years, I was actively involved in sending out news releases (on occasion, as for the Banff 1991 conference, I’ve spent up to 16 hours a day, as on weekends and summer breaks, sending out news releases) and arranging for interviews in connection with my volunteer work.

    After some years, at my suggestion, we changed the name to the Canadian Stuttering Association (CSA). That has worked much better from the perspective of media relations and raising awareness of our work on behalf of people who stutter.

    I’ve occasionally suggested to staff at ISTAR that having a shorter name than Institute for Stuttering Treatment and Research would work better from a media relations and public profile point of view. However, last I heard (many years ago), the ISTAR board likes the acronym that’s in place and is not about to change the name of the institute.

  3. Jaan Pill
    Jaan Pill says:

    A related topic, which I will outline at the current note, concerns the role that concepts or processes such as cognitive restructuring (which is sometimes used to describe certain features of cognitive behavioural therapy), self-talk, and what I call the inner voice can play in a person’s life.

    In addressing the project of relearning how to speak, of learning fluency as a second language – a project that has worked for me, and for many other people I know, but that is, most definitely, not the favoured may to go, for many other people) – I’ve addressed pretty well all aspects of my communications, by approaching things pretty well entirely in technical terms.

    For example, if I was preparing for a presentation, I would have cared less about whether or not I felt apprehensive; whatever apprehension was in place I could readily address through modification of my self-talk, a process that I was familiar with through a study of the work of the psychologist Aaron Beck, years ago. I knew that, so long as I was able to apply may fluency skills (which I knew I could do, as I was constantly practising them, the way a musician or athlete is constantly practising key skills), my presentation would go fine.

    (The alteration of self-talk was also a key feature of the cognitive restructuring taught at the ISTAR clinic I attended in 1987. Such an approach is a standard feature of contemporary fluency enhancement strategies.)

    I also learned a technique, years ago, for dealing with the adrenalin rush that sometimes would occur just before a major presentation. I had learned to momentarily tighten the muscles around my solar plexus. That would stop the adrenalin rush in its tracks.

    As well, during my teaching career I took an eight-week course based on the concept of mindfulness-based stress reduction. That meant that I knew how to stop a characteristic stress response, which used to occur regularly, from arising under certain conditions such as in my day to day role as a classroom teacher.

    After taking the above-noted course, and practising mindfulness meditation twice a day for weeks on end, I learned that, so long as I could focus on my breathing, even for a few seconds, I was able to avoid the stress response that, in previous years, had become for me a source of concern, as such a response gives rise to a cascading of physiological events that, over the yers, can affect a person’s health and well-being.


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