Draft No. 2 goes like this:
I am very pleased to be speaking with you today.
The title of my talk is: “Everybody’s story matters.”
I chose the title because, in my view, each of our stories is equally important.
In the first 20 minutes of my talk today, I will share my own story. After that, I will speak about community organizing on behalf of people who stutter. As well, we will have time, at the end of my talk, for comments or questions. I am interested in your views, and I am interested in learning from your own experiences.
The early years
So, I will begin with my own story as a person who stutters.
My parents, and members of our extended family, fled Estonia as refugees in 1944, during the Second World War. I was born in Sweden in 1946.
When I was five years old, in 1951, our family moved to Montreal.
I began to stutter at the age of six, one year after we had moved to Canada from Sweden. That was in 1952, 66 years ago. When I was in elementary school in the 1950s, I received some speech therapy, but it didn’t help. Sometimes, when I tried to speak, no words would come out at all. I spent much of my time not saying anything.
In those early years, when I could barely speak, a most amazing thing would sometimes happen. Every once in a while, a person would look at me, and through a smile or gesture, would pass along a very important message. That message was: “Yes, you stutter. Nonetheless, you are a cherished, and valuable, part of the human race.” That meant a lot to me.
The phone call, that never got off the ground
I remember an event, in my late teens or early 20s. One time, I wanted to phone someone and speak with them. This was in the days of landline phones, long before smartphones and the internet came on the scene.
And so, I picked up the phone, and in those days, the “H” sound was very difficult for me to say. Words like hello, house, or holiday. Sometimes, I just could not get past the “H” sound.
So, on this occasion I picked up the phone and wanted to speak to someone, and wanted, first of all, to say hello. And so, I tried to say hello but I could not, and for maybe 20 or 30 seconds there was a period of silence, on the phone line, and after that, I decided to hang up the phone.
I still remember the feeling: “Here I am, at the beginning of my life. My life is stretching out ahead of me. I pick up the phone, and I can’t even say hello.”
So, that was part of my experience, as a speaker in those years, but at the same time we know that the severity of stuttering can vary from situation to situation, and from day to day.
We also know, from anecdotal evidence, that some people who stutter severely have become very successful as actors, singers, or other kinds of performers.
This has to do, perhaps, with taking on a particular role, as in stage or movie performance. It also has to do, perhaps, with having a prepared script, and enough time to rehearse one’s lines. In such a performance, a person usually has good control over her or his breathing. When we can breathe smoothly, we can often get the words out.
High school campaign speeches in 1962
And so, another story that I want to share concerns the time that I was in high school in grade 10, and we heard in our school of a call for nominations, for anybody who wanted to try to get elected, as president of the student council.
A friend of mine, who I think was very perceptive, had observed that, sometimes, I had been very outspoken in our English class. This gave him the idea that I would make a good president, of the student council. That is, on some occasions, it was clear that I had opinions and that I liked to speak out.
The reason I was outspoken in English class was that I had learned, as a person who stutters, that if I interrupted our teacher, while he or she was speaking, I could sometimes achieve some level of fluency. At other times in class, I would just get stuck, in trying to say a sentence, and would get nowhere. It also happened that I was a first-rate English student. I was among the best students, of English literature and composition, at the school.
So, my friend said to me, “Why don’t I nominate you as president of the student council?” I thought, “Why not?”
So, I was nominated, and as part of the election campaign, the two candidates, for president of the school council, had to give campaign speeches in the school auditorium.
It was a big auditorium, and could seat hundreds of students. There would be two such speeches, so that as many students, as possible, could hear the two candidates make their speeches.
And so, as a person who usually stuttered severely, I was wondering what I should do. I decided that I would write a great speech, using the inaugural speech (made in January 1961) of the American president, John F. Kennedy, as a starting point.
I would use Kennedy’s inaugural address as a model, for crafting my own campaign speech.
At that time, we lived in a small, two-storey house in Montreal, and I would stand at the top of the stairs, on the second floor of the house, and I would rehearse my speech every day, while no one else was at home. Day after day, I would keep on rehearsing my speech, until I had it memorized.
Finally, the big day arrived, at the school auditorium.
I recall that, the first time that I gave my speech, I was walking down an aisle, toward a stage where a lectern and a microphone had been set up. As I was walking toward the stage, some of the students looked at me, with expressions of concern and alarm.
They knew I stuttered severely. They were not keen to witness what, as they feared, was about to occur.
I stood on the stage, looked at my written text, and announced that I would be making no promises, in my campaign for the presidency. I said, and I quote, “In your hands instead of mine, will rest the final success or failure of the student council.”
It turned out to be a great speech. I spoke fluently, I think because I had rehearsed my speech endlessly, and because I managed to maintain a smooth rhythm, in my breathing.
I made the speech, using the strong cadences and turns of phase, that the American president, John F. Kennedy, would have used.
And so, I finished my speech. There was a moment of silence. And then I heard a tremendous round of applause. A few days later, I made the same speech, at the auditorium. Once again, after my speech, I heard a tremendous round of applause.
Soon it was confirmed, as I had expected, that I had won the election by a landslide.
I’m still friends, these many years later, with the person who was my opponent in the election. We both have leadership qualities.
Speaking at other times was a struggle
Despite my great speech, at the auditorium at my high school, most of the time it was a real struggle for me, to get out any words at all.
I had no idea what kind of work I would be able to do, as an adult, given that I could barely speak, much of the time.
Eventually, after many years, I managed to complete a bachelor of arts degree, at Simon Fraser University in British Columbia, on the west coast of Canada. In previous years, I had dropped out of classes at McGill University in Montreal.
After university, I began working with very young children, as a supply teacher (that is, filling in for teachers who were away) at a day care centre in Toronto. I also had the good fortune to meet my future wife, while working at that day care centre. We kept in touch over many years, and eventually we got married.
When I was at the day care centre, I met someone who told me that, as a university graduate, I could also do supply teaching in special education schools, that existed at that time in Toronto, for severely handicapped students.
The classes were small, and the fact I stuttered was not a concern for anybody. So, I began working as a supply teacher in school programs serving severely disabled students. Eventually, I moved into teaching regular classes, in elementary schools, but for many years, I worked with severely disabled students.
Speech therapy in Toronto in 1976
At the age of 30, I attended a three-week speech therapy clinic in Toronto. At this clinic, for the first time, since the age of five, I learned that it was possible for me to get through a full sentence, without struggling over any of the words.
After the clinic, I spoke quite well, although I was not prepared to engage in public speaking.
About a week after the Toronto clinic, however, I was talking with a friend on the phone, and all of sudden my newly acquired fluency skills flew out the window. All of the old ways of speaking seemed to return.
Despite this relapse, however, I still was able to speak slightly more fluently, than had been the case previously.
As a supply teacher, working in special education classes, at the time, I realized that it would be a good idea for me to take a one-year course, at the University of Toronto faculty of education, in order to get a teaching certificate. With a lot of work, I managed to get through the one-year program, and began teaching full-time as a special education teacher.
May 4, 1987 Toronto Star article about Edmonton treatment program
Some years later, at the age of 41, I read an article in the May 4, 1987 edition of the Toronto Star. The article, which described a newly opened, three-week speech clinic in Edmonton, Alberta, changed the trajectory of my life.
The clinic was called the Institute for Stuttering Treatment and Research, or ISTAR for short. These days, I make regular donations to ISTAR, in support of their work.
In July 1987 I flew to Edmonton, to attend the clinic. I like to say that, at the Edmonton clinic, I relearned how to speak. Another way, that I could say the same thing, is to say that I learned fluency as a second language.
I learned a set of five speech skills, and practised them every day, for over four years. I also consciously applied my speech skills, every time I spoke – every time I had a conversation, spoke on the phone, or made a presentation.
As well, I recorded many of my conversations and phone calls, and analyzed two-minute segments of them, to make sure that I was applying the speech skills correctly.
The skills that are taught, at the clinic, are continuously changed, in small ways, based on research, around the world, and clinical experience. The clinic is dedicated to a philosophy of continuous improvement, in all aspects of its work.
I knew, from previous experience at the age of 30, how easy it is for a person to lose the skills, that they had learned at a speech therapy clinic. This time, I made sure I would do a great job of maintaining my skills, by consciously applying them each time I spoke, as the years went by.
90-second YouTube video featuring Arun Khanna of CSA
Not everybody who stutters is going to end up at a three-week clinic, of the kind that I attended in 1987, 31 years ago.
Some people can make great progress, in their speech, just by being open about stuttering, and getting large amounts of practice in public speaking. One of my friends, Arun Khanna, has achieved great results, without getting much in the way of formal speech therapy at all.
I say that, in order to underline that there are many ways, that a person can deal with stuttering. Each of us can choose our own way. There is no one way that will work for everybody.
Some time back, I recorded a 90-second video, and posted it to YouTube. In this video, Arun Khanna speaks about the great experiences he has had, as an conference organizer, with the Canadian Stuttering Association, over a period of many years. The video is of value for two reasons.
First, the video provides a transition, to the next stage of my talk, which focuses on the founding of groups, working of behalf of people who stutter, such as the Canadian Stuttering Association. That will be the topic of the rest of my presentation today.
Secondly, Arun Khanna’s testimonial, regarding the benefits that he has received from being an active member of the Canadian Stuttering Association, speaks for itself.
Bothersome inner voice
The second stage, of my presentation today, involves how I became involved with community organizing of behalf of people who stutter.
After I got back from Edmonton, I began to make presentations to large audiences. In the course of these presentations, however, I began to run into a huge problem – which I had never expected, and which bothered me no end.
Each time that I would be making a fluent presentation to a large audience, a voice inside me would say, “You’re not supposed to be able to do this. You’re supposed to be falling flat on your face.” Each time I was speaking to a large audience, the same inner voice would start to bother me.
I would talk about this with one of my friends, who did not stutter. My friend would say, “You are doing a great job at public speaking. So, why would this inner voice be a source of concern for you?”
At first, I thought that I should get some psychotherapy. But then, an even better idea occurred to me. I realized that, what I needed to do was to talk with other people who stutter, and compare notes with them. That would be the best way, I realized, to deal with this bothersome inner voice.
So, I decided to form a self-help group for people who stutter, in Toronto. I spent a couple of months speaking with people, to get ideas about how best to go about launching such a group.
One of the people that I spoke with said that he had seen plenty of such groups come and go, over the years. Once the founder of the group gets burns out, or moves on to other things, the group would fold.
I decided that, with the group that we were starting, that would not happen. Instead, from the start, we would focus on leadership succession. When we formed this Toronto group, at a meeting in September 1988, we called it the Stuttering Association of Toronto, or SAT for short. We met every two weeks, and I led the first few meetings.
After that, we arranged for other people to take turns, if they wanted to, in leading two meetings in a row. In that way, we all got leadership experience – and developed a strong sense of shared ownership, of the association.
I had also seen meetings, for people who stutter, where one or two people would do most of the talking. I decided that, in the group that I was involved with, speaking time would be shared more or less equally. That’s a way of saying that everybody’s story matters, and has equal importance.
I had also seen a situation where the members of a group were all clients of a particular treatment program. If you hadn’t been through the program, you couldn’t join. I wanted to start a group that was open to everybody, whether they had received speech therapy or not. As well, friends and family members of stutterers would be free to join the group.
As well, our group would provide an impartial forum, for the sharing of information about stuttering. We would not advocate on behalf of any particular approach, for dealing with stuttering.
The one thing that would be off-limits would be claims for sure-fire, so-called “cures” for stuttering. We were not going to provide a forum, for so-called treatments, that could not be backed up by solid evidence.
We also decided that the group would be run by people who stutter, not by speech therapists. Speech professionals were welcome to attend meetings as guests, but they were not going to be involved with the running of the group.
We also did not want a situation where one person does all the work, makes all the decisions, and eventually drives all of the other volunteers away, until the group folds. That was not the kind of group that we had in mind, when we founded the Stuttering Association of Toronto.
I also decided that, in the group that I was starting up, an informal, flat-hierarchy structure would be in place. To underline this, instead of calling the leader of the group the president, I suggested that the leader be called a coordinator. That’s a less impressive title, and more in keeping with a flat-hierarchy structure.
Adjusting to changes, that have occurred in a person’s life
After about a year of meetings, of this group, a speech therapist who stutters, named Tony Churchill, came to speak at one of our meetings. After the meeting, I asked him about this inner voice, that kept on telling me that I should be falling flat on my face, each time I spoke to a large audience.
Tony knew at once, how I could address the inner voice. He said to me, and I paraphrase: “What you are dealing with is the need to adjust to some changes, that have occurred in your life.”
I said to myself, “Wow! That’s it. That’s what the inner voice has been telling me.” From that point on, the inner voice never bothered me again.
Canada’s first national conference for people who stutter
After about a year of meetings, those of us who were active, with the Stuttering Association of Toronto, began to work with other groups across Canada, to organize the first-ever national conference of self-help associations, of people who stutter. This was the first conference, of its kind, in Canada. We spent two years organizing the conference, which took place in August 1991 in Banff, Alberta.
I worked with many other people to create a draft of a constitution for the new national group, which eventually became known as the Canadian Stuttering Association, or CSA for short. We had input from people across Canada, as we developed the association’s bylaws and constitution.
Instead of a president, to lead the association, we had a national coordinator. That person would serve for two terms, of three years each, as I recall. Then a new national coordinator would take over.
As well, we would offer an impartial forum for the sharing of information. We would collaborate closely with speech professionals and researchers, but would be independent of them.
In assisting with the founding of CSA, and several other associations, in those years, I just happened to be the right person, at the right places, at the right time. Everything we do, as volunteers, is contingent on challenges and opportunities, that are available to us, at a given time.
CSA has done very well, in the years that followed. I served as the first national coordinator, and since that time, a whole series of leaders has taken on the role, of serving as the national coordinator. We have an informal structure, and input is welcome from every source. We never have a situation where just one to two people run the show.
When work has to be done, to organize national conferences and events, or develop an annual strategic plan, the work gets done smoothly, in a collegial atmosphere.
We don’t spend a lot of time dwelling on our early history. The culture of decision making, that was in place at the beginning, however, is still in place now. Our focus, as a national association, is on the present moment. We are always seeking new people, to join the leadership team that is currently in place. We are always seeking ways to ensure that growth and renewal are at the forefront of our work on behalf of people who stutter across Canada.
The culture of decision making, that I have described, is a culture that has worked well in Canada, with input from many Canadians including myself. I would not say, for a moment, however, that what works for us in Canada is the only way to organize, at the national level.
Every country is different. Every country has a different culture. About all that I would want to say is that, as people who stutter, we have a lot to learn from each other. Speaking for myself, I do not see myself as an expert, regarding any topic.
I would also note that it turned out to be true – small groups tend to come and go. The Stuttering Association of Toronto, of which I was the founder, in September 1988, eventually faded away. After I moved on to other things, other people took turns serving as the coordinator.
Eventually, like many such groups, this local Toronto group folded. From an anecdotal perspective, I would say that in a year of two of meetings, a person can get tremendous benefit from such a group, and then it’s time to get on with other aspects of life.
In the case of national groups run by volunteers, such as CSA, the scale and purpose of the organization is different. It also has a formal constitution. For a variety of reasons, it keeps on going strong.
I would add that for national associations with paid staff, where typically an executive director, reporting to a board of directors, heads the organization, it’s at the board level where leadership succession is especially important. However, in this case the executive director wouldn’t have a fixed term of office, and might stay around for a long time.
Launch of the Estonian Association of People Who Stutter
One of my interests, in visiting Estonia this year, is to learn details about how the Claudius Club was launched, after my lectures in Estonia in 1990. I also have an interest in learning what steps were involved, in the launch of the Estonian Association of People Who Stutter in 1993.
Launch of the International Fluency Association, and of the International Stuttering Association
I was not involved with the founding of the International Fluency Association (IFA), but served for some time, around the early 1990s, as chair of the IFA’s support groups and consumer affairs committee. I also organized a panel discussion, featuring self-help groups and speech professionals, at an early IFA congress in Munich. Some years later, I made a keynote presentation at an IFA congress in Montreal, about things I had learned about the dynamics of national associations for people who stutter.
The International Fluency Association sought to bring together speech professionals, researchers, and people who stutter, all in one body. My sense was that, in practical terms, people who stutter were the junior partners in this arrangement. After some years, I was approached by Thomas Krall of Germany to launch another international body, the International Stuttering Association, which would serve as a voice for people who stutter, at the international level.
Again, I was involved as a key organizer, for the founding of this association. Thomas Krall, and other self-help leaders from countries around the world, worked together to draft the constitution, and bylaws, of this new international body. Among the provisions, in the constitution, was a policy of leadership succession, and the provision of an impartial forum, for the sharing of information.
For some years, I was active with ISA as an advisor, offering input when the board of directors was exploring a wide range of options. For a while, I also served as chair of a working group that was involved in assisting in the launch of new associations in countries such as Israel, China, and several African countries including Cameroon and Burkina Faso.
In time, I stepped back from my volunteer work at the international level, and spent several years assisting CSA with organizing of conferences, and with media relations.
In the past 15 years, from 2003 to 2018, my volunteer work has largely been focused on areas other than stuttering. The skills that I learned in the previous 15 years, from 1988 to 2003 – especially with regard to community organizing and media relations – have served me well, in the volunteer work that I am especially focused upon now.
This work largely involves local history, including topics such as how land-use planning decisions are made, in the part of Canada where I live.
What matters most of all, in my view, is to keep on learning new things, in the present moment. As always, there is value in comparing notes, and learning from each other’s experiences, no matter where we may be living, and no matter what language we may be speaking.