My Story as a Stutterer: Speaking notes for presentation at Nordic Meeting, Tallinn, Sept. 1, 2018

I am very pleased to be speaking with you today. I want to thank Andres Loorand for inviting me to speak at this conference today. I also want to thank the members of the Estonian Stutterers Association, who have been so welcoming and helpful, in ensuring that our family’s visit to Old Tallinn was among the most enjoyable highlights, of our recent visits to several European cities, including Amsterdam and Stockholm.

The title of my talk is: My Story as a Stutterer. My own story is but one story, among many others. Each of our stories is important, and deserves to be heard. I’m pleased I have the opportunity to share my own today.

I will first speak about my own story. Then we will watch a 90-second video, on the work of the Canadian Stuttering Association. Then I will share some stories about what I like to describe as community organizing, on behalf of people who stutter. Finally, at the end, we will have time for your comments and questions. I’ve got some handouts, which we will distribute at the end.

I am a retired public school teacher. I worked for over 30 years as a teacher. When I was a child, the idea of my standing in front of a class, in the role of a teacher, would never have occurred to me.

I want to note that, in telling my own story, I do not wish to suggest that everybody should follow my own approach, which involved a three-week speech therapy program over 30 years ago. Other people have done well, without any formal speech therapy at all.

As well, I am not an expert, on any topic. If you disagree with things that I say, I will celebrate your capacity for dissent.

My early years

My parents along with other members of our extended family left Estonia as refugees in 1944, during the Second World War.

I was born in Stockholm in 1946, after the war ended. People told my mother that it was a really bad time, to bring another child into the world, right after the war, but she disagreed. She thought it was a great idea.

In 1951, I moved to Montreal, with my family.

The next year, in 1952, when I was six years old, I began to stutter. My stuttering grew more severe, as the years went by. Sometimes, I could not get out any words at all.

I have a couple of contrasting stories, that offer a picture of the early years.

Phone call to nowhere

One time, in my late teens or early twenties, I wanted to speak with someone, on  the phone.

In those days, the “H” sound was especially hard for me to say. Words like house, holiday, hello – on some days, I could not get past the “H” sound.

So, this one time, I phoned someone, and I wanted to begin the conversation by saying hello. I tried to say the word, “hello,” but could not make any sound at all. For maybe 20 or 30 seconds, there was silence, on the phone line. Finally, I hung up the phone.

I still remember the feeling, on that occasion. “Here I am, at the start of my life. My life is stretching out ahead of me. I pick up the phone, and I can’t even say hello.”

Whenever I tell this story to elementary school children, when I visit a school once a year to talk about stuttering, I ask them how they think I felt. On a recent visit, a child of maybe six or seven years of age said, “You must have felt frustrated.” Or a child might say, “You must have felt sad.”

Campaign speeches

Despite this kind of a situation, with a phone call, there were other days when I spoke quite well.

When I was in high school, I was a very good English student.

When I was in Grade 10, toward the end of the 1961-1962 school year, we got word that nominations were being accepted, for candidates who wished to run for election, to become president of the student council for the next school year.

One of my friends told me that I was always very outspoken in our English class. He said, “You have lots of opinions. You would make a great president, of the student council.”

I was, in fact, outspoken in English class. I had learned, as a person who stutters, that if I yelled something out in class, interrupting the teacher while she or he was speaking, I could usually speak quite fluently. At other times, I would get stuck, as soon as I tried to say anything at all.

My friend said, “How about I nominate you to be president of the student council?” I thought, “Why not?”

There were two candidates, for the position of president, in that school year.

Part of the election campaign would be the campaign speeches, in the school auditorium. There would be two such speeches, with hundreds of students filling up the auditorium each time.

Despite the fact I stuttered severely, much of the time, I knew exactly what to do. I knew that the American president, John F. Kennedy, had made a great speech when he was inaugurated, at the beginning of his term in office.

I had the full text of the speech, and I used it as a model, for my own campaign speech.

We lived in a small, two-story house in Montreal, at the time. Every day, after school, when no one else was at home. I would stand at the top of the stairs, at the second floor of the house, and practise delivering my great campaign speech.

Finally, the big day came. I was sitting in the audience, and a teacher announced that it was my turn to deliver my campaign speech. As I was walking down the aisle, toward the stage of the auditorium, I could see some of the students looking at me, with expressions of concern on their faces. Possibly, they were aware that I sometimes stuttered severely, and were concerned about what would happen next.

The stage had a lectern set up, along with a microphone.

So, I looked at my prepared text, and announced that I would make no promises, of any kind, as a candidate for president. Instead, I said, and I quote this directly, “In your hands, instead of mine, will rest the final success or failure of the student council.”

I spoke fluently, from start two finish. The fact I had rehearsed my speech endlessly, was very helpful, in this regard. All the way through, I maintained a smooth rhythm in my breathing.

And so, my speech came to and end. There was a moment of silence. And then, I heard a tremendous round of applause.

A few days later, the two candidates were, once again, making their speeches, in the auditorium. One again, I gave the same speech. Once again, the speech went well.

Some days later, the election outcome was announced. As I had expected, I was the winner, of the election. And, I’m still friends, these many years later, with the student who was the opposing candidate.

Speaking at other times

At other times, however, when I wasn’t standing on a stage, I did not speak as well. Much of the time, every sentence was a struggle.

After many years, I managed to graduate with a bachelor of arts degree from Simon Fraser University, on Canada’s west coast. In the mid-1970s, I began working as a substitute teacher at a day care centre in Toronto. I would be called in to work, when a teacher was absent.

In the years I was at the day care centre, I learned that I could make more money, than at the day care centre, by working as a substitute teacher in special schools, that existed at the time, for severely handicapped students.

In 1976, at the age of 30, I attended a three-week speech therapy program in Toronto. For a while I spoke quite well, although I was not prepared to do any public speaking. A week after the clinic, however, I was speaking with a friend on the phone. All at once, all of the skills that I had learned at the clinic flew out the window. Despite this relapse, however, I still spoke a bit better than I had done before.

After a few years of substitute teaching, I enrolled at the University of Toronto faculty of education. Although my speech waster from perfect, I was able to complete a bachelor of education course and then began working g full-time, as a special education teacher. I was working with severely handicapped students, and whether or not I stuttered was not a concern for anybody.

ISTAR

On May 4, 1987, I had not been planning to buy a copy of the Toronto Star newspaper, a widely read Toronto paper. However, a neighbour, across the hall from the apartment building where I was living, at the time, gave me a copy of the paper, after she had read it.

In reading the newspaper that day, I came across an article about a new stuttering treatment clinic, that had been set up in Edmonton, Alberta in Western Canada. The clinic was called the Institute for Stuttering Treatment and Research, or ISTAR for short.

At ISTAR, I relearned how to speak. I learned a set of five speech skills, spending 12 hours or more each day working on the correct application them. When I got back to Toronto, I practised the skills every day, for over four years. This time, I did not want such skills to fly out the window, as had happened to me before.

Each time I spoke, I consciously applied the skills. I would also record my conversations, and the like, and analyze two-minute segments of them to ensure I was applying the skills correctly. If I ever ran into difficulty, I knew what to do, to get back on track.

Inner voice

I began to make fluent presentations, to large audiences. However, I ran into a problem. The problem was that, every time I would be making a fluent presentations 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.”

A friend of mine, who was fluent, said, “Why should this inner voice bother you? You speak fine now. What’s the concern?”

Still, it bothered me. At first, I thought I should get some psychotherapy. But then, it occurred to me that what I really needed to do was to compare notes with other people who stutter. That’s what prompted me to start a local group in Toronto, the Stuttering Association of Toronto, or SAT for short. SAT was formed in September 1988, after I had spent a couple of month doing research and talking with people, about the best way to start up such a group.

Leadership succession and impartial forum

One person, that I spoke with, said such groups come and go. The founder burns our or moves on to other things, and the group folds. I decided that I would focus on leadership succession, for the group, right from the start.

In the case of the Toronto group, my efforts at ensuring that other people would take over, after I had moved on to other things, didn’t work out as planned. People got a lot out of the group, but in time it folded.

I was more successful, in focusing on leadership succession in the next groups that I, working with a large number of other people, was involved in founding – the Canadian Stuttering Association and the International Fluency Association. These organization are still going strong.

The concept here is that a leader will head the organization for a fixed period of time, and then someone else would take over, as the leader. In terms of the Toronto group, we also took turns, leading two meetings in a row, so that we would not have a situation where just one particular person led all of the meetings.

With the Toronto group, and later with other groups, we also set up an impartial forum, for the sharing of information That is, we didn’t start to say that we are advocating on behalf of a particular way, to deal with stuttering.

I found it very helpful to compare notes, with other people who stutter, in the course of the meetings, held every two weeks, of the Stuttering Association of Toronto. A year after we had started up the Toronto group, Tony Churchill, a speech therapist who stutters, came to speak at one of our meetings. After the meeting, I asked about the inner voice, that was telling me that I should be falling flat on my face, every time I made a presentation to a large audience.

He said, and I paraphrase, “What the inner voice is saying is that you need to adjust to some changes that have occurred in your life.” I thought, “Wow. That’s it.” After that, the inner voice never bothered me again.

Canadian Stuttering Association

By that time, in 1989, SAT and other groups in Canada were starting work on the organizing of a national conference, of people who stutter. This was the first time that such a conference had ever been held in Canada. The conference took place in Banff, Alberta, in the Canadian Rockies, in August 1991.

At that conference, about 80 people from across Canada decided to form the national body that is now called the Canadian Stuttering Association, or CSA for short.

The constitution and bylaws for CSA specified that we would have a policy of leadership succession, and would provide an impartial forum for the sharing of information. I would add that the impartial forum does not extend to sure-fire, so-called “cures” for stuttering. If we figure that something is not a legitimate form of therapy, we do not provide a forum for sharing of information about it.

90-second YouTube video

A 90-second YouTube video, featuring Arun Khanna of Toronto, who has never had formal speech therapy, gives a quick overview of how CSA was formed, and the conferences that it has organized in the past 27 years.

I want to emphasize that I am not presenting the Canadian Stuttering Association as a model that other groups should follow. The structure that we have set up works well for us, in Canada. Other countries have a different history, and a different culture. There are many ways to organize a national association. What we have done in Canada is just one of the many possible ways.

Estonian Stutterers Association

in 1989, I visited Estonia to help with the restoration of a manor building in Rapla. Among the people I met with during that visit was Ülo Lomp, who arranged for me to be interviewed by Kart Hellermaa, a writer for Noorus magazine, at that time a widely read magazine. Andres Loorand read the article, and got in touch with me.

As a result, in 1990, I delivered a series of lectures in Tallinn, in Estonian, sharing my own story and describing a three-week treatment program that had enabled me to find a way to deal with my stuttering. The lectures led to the founding of a small group in Estonia, the Claudius Club. As a next step, the Estonian Stutterers Association was founded in 1993.

International Stuttering Association

I was, as well, involved in the founding of the International Stuttering Association, in 1995. Prior to that, I had been involved in extensive international networking, among national associations for people who stutter, in my work with the International Fluency Association.

These days, I am not so much involved with volunteer work, on behalf of people who stutter. My volunteer work is now more concerned with other topics, such as local history and land-use planning.