A person can find it useful to compare notes with people who’ve had similar life experiences
As I’ve noted at a previous post, I’m preparing for a November 2021 panel discussion organized by the Canadian Stuttering Association.
Each panelist is allotted four minutes for each of the following three questions:
1) Why did you go to Banff 1991 (the first-ever national conference for people who stutter) or your first conference? What did it mean to you to attend?
2) What has your journey/life been like over 30 years?
3) Now that we’re 30 years ahead, what would you tell a younger version of yourself that attended that conference?
1) Why did you go to Banff 1991 or your first conference? What did it mean for you to attend?
I went to Banff in 1991 because I was aware of the value of people coming together to compare notes about things they had encountered in their lives. 
To be more specific, four years earlier in 1987, I had spent three weeks at a stuttering treatment clinic in Edmonton, where I was able to attain good control over my stuttering.
After the clinic, I was able to make fluent presentations to large audiences, which, aside from two speeches in my high school years (when I was running for the position of president of the student council), I had previously not been able to do.
But I had found it very hard to adjust to this new level of fluency.
I had realized that, if I spend some time comparing notes with other people who stutter, that would help me to make this adjustment. That led me to start up a local group in Toronto for people who stutter, the Stuttering Association of Toronto, or SAT for short.
Our first meeting was in September 1988, at a meeting room at the North York Public Library. In the years that followed, we met every two weeks at Hart House at the University of Toronto.
Within a year of starting the group, I had made the adjustment – the psychological adjustment – to making fluent presentations to large audiences. Making such presentations no longer felt strange to me.
Having learned of the benefits of comparing notes at the local level, among those of us who stutter, I naturally had an interest in helping to launch a national organization so that we could also compare notes, as people who stutter, at the national level.
In the years that followed, I also worked with other people to set up an international association (in 1995), serving the same purpose. As well, in 1989, I made a series of presentations about stuttering in Tallinn, the capital city of Estonia – again, for the same purpose. Those presentations led to the launch, in 1993, of the Estonian Association of People Who Stutter.
The key point is that, as people who stutter, we are not alone and we have a lot to learn from each other.
2) What has your journey/life been like in the 30 years since the conference in Banff?
I’ll say a few words about how I ended up in Edmonton, in July 1987.
As a child, there were times when I could not get out any words at all. As well, when I was growing up in the 1950s and 1960s, there was little public awareness about stuttering. Then as now, a lot of negative stereotypes were connected with stuttering.
In the summer of 1987, at the age of 41, I was living in a low-rise apartment in North York, a neighbourhood in Toronto. I didn’t like the owners of the building, and wanted to find a new place to live. At that time, before the internet, if you wanted to rent an apartment, you would read the classified ads in newspapers.
I wasn’t reading newspapers very often, at that time. I had a neighbour across the hallway, however, an elderly woman, I think her name was Ethel. She was very kind to me.
On May 4, 1987, Ethel left a copy of the Toronto Star outside my door. She knew the classified ads were of interest to me. I still remember, I sat down in my cockroach-infested apartment, and came across a brief article about a new speech clinic that had recently opened up in Edmonton.
I was on the phone to Edmonton the next day to sign up for the next session of the ISTAR (Institute for Stuttering Treatment and Research) treatment program. In July 1987 I flew off to Edmonton.
That newspaper article changed the trajectory of my life. I would not be here now, speaking with you today, if I had not come across a copy of the Toronto Star that day. The ISTAR clinic in Edmonton made all the difference in the world for me.
The years have gone quickly and much has been achieved. I got married, for one thing. I now live with my family in a house in Stratford, Ontario. I worked for many years as a teacher and then finally retired.
From my perspective – looking back on the early years when I at times stuttered very severely – I had no choice but to learn fluency as a second language, and to work on those skills every day. My speech has been fine in the years that followed.
What has worked for me will not necessarily work for other people who stutter. Many people are helped by learning the skills I learned, but for a minority, for reasons based on how their brains are wired for speech production, there will be few lasting gains. In such a case, other forms of treatment options are available.
Some people seek to get help through attending a treatment clinic. Other people avoid treatment entirely. Each of us deals with stuttering as we see fit.
For about 15 years, from 1988 to 2003, I was very active as a volunteer, involved with many projects, locally, nationally, and internationally on behalf of people who stutter. Sometimes I would spend 16 hours a day on volunteer projects. 
In the subsequent 15 years or so, I’ve been involved mainly with local history and land use decision making, in Toronto and more recently in Stratford. I don’t spend many 16-hour days, anymore, doing volunteer work.
In relation to stuttering, my more limited volunteer work in the past 15 years has involved making some occasional presentations about stuttering in schools. I’ve also presented workshops dealing with teasing and bullying of children who stutter.
About a decade ago, I set up a website, called Preserved Stories, where I write about local history, land use issues, and community self-organizing.
By community self-organizing I refer to processes whereby people get together, in order to ensure that their interests are taken closely into account, with regard to any topic of interest.
At my website I also describe how I worked every day for over four years to consolidate the speech skills that I had learned in Edmonton, so that I could apply the skills in every speaking situation that I encountered. I also have links to videos I’ve made about stuttering.
I’ve worked at my speech systematically, and very hard, because my starting point has been a situation where I stuttered very, very severely. There had been times, during childhood and adolescence, when I could not get out any words at all.
At times, the Mute Button had been switched on, and I had no idea (until I got some help, from many kind and knowledgable people, in the years that followed) about how to switch it off. 
3) Now that we’re 30 years ahead, what would you tell a younger version of yourself that attended that conference?
I would tell myself that a person is on the right path when they take an evidence-based approach to life. That’s what I did and it worked out well.
I would tell myself (looking back in hindsight) that it was a great thing that I learned to listen really well, when I was younger, and that listening well turned out to be a key to my effectiveness as an organizer involved in the launch of CSA and other organizations.
I would also tell my younger self that I could well have listened even more closely. There’s never a limit to how closely you can listen, when speaking with any person that you encounter.
The other thing I would tell my younger self is that it’s great to do lots of volunteer work but it’s also important to take time to focus on one’s personal life and interests. It’s important for people involved with intensive, time-consuming volunteer work to maintain a suitable balance in their lives.
Leave a ReplyWant to join the discussion?
Feel free to contribute!
Note 1: I am absolutely fascinated with the development of by-laws and constitutions for non-profit organizations. I am absolutely fascinated, as well, with the power dynamics of non-profit organizations. Early on in making presentations, however, I learned that as soon as I start talking about such topics, people’s eyes tend to glaze over, and a general restlessness in the audience immediately comes to my attention.
Thus this footnote. In the event you wish to learn about such arcane topics, some awesome posts include:
In August 1991, the first-ever Canadian conference of people who stutter took place in Banff, Alberta
Some general comments about power dynamics in non-profit organizations
As a corollary, I can add this: A key point about a panel or a presentation is that one must know one’s audience. That means that, in this case, I end up talking at some length about a topic that, relatively speaking, bores me – namely, my own little story.
A further corollary is that a presentation is an interactive process (someone out there is listening), in the same way that a written text is an interactive process (someone out there is reading). Thus when all is said and done, I’m pleased to talk about myself at the panel, because what matters to the audience matters to me as well; its matters to me big time!
Note 2: The 16-hour days were on weekends and summer breaks.
At times I would put in eight hours at my day job followed by eight hours of volunteer work on the same day.
Devoting enormous amounts of time to getting things done plus planning far ahead (typically I had a major project in mind involving vast numbers of people that would take several years to complete) enabled me to be productive during the 15 years (1988 to 2003) when I was actively involved with stuttering associations at the local, national, and international levels.
Having deadlines in place was much of the time a key ingredient for getting things done. The fact I was working in collaboration with many other people kept me highly motivated. Being able to discuss things back and forth on group projects meant we were making sound decisions.
Among other things, I looked after media relations for the Canadian Stuttering Association for several years after the Banff 1991 conference. I also served as the association’s Acting Coordinator and later (once our by-laws and constitution were in place) as its first National Coordinator.
The CSA constitution (developed at each stage with extensive input from the association’s membership) specifies a fixed term of office for the National Coordinator, meaning that several other people have served in that capacity in the years following my own tenure in office.
Leadership succession is built into the culture of the association. Another thing built into the organizational culture is that we provide an impartial forum for the sharing of information (with the exception that we do not provide a platform for scams promising a ‘quick cure’ for stuttering).
In the weeks leading up to the Banff 1991 conference, I wrote press releases and sent them out via hundreds of Canada Post letters to media outlets across Canada. I used a resource called the Bowden’s Media Directory to put together an extensive mailing list. For the 1991 conference, I was preparing and sending out letters 16 hours a day, over a period of probably more than a week (how long it took escapes me now).
As a result, we got tremendous media media coverage across Canada for the conference. The news hook that attracted the attention of editors and reporters was the fact that this was the first national conference of its kind ever held in Canada.
Among the story lines that I particularly enjoyed was the observation, that organizers of the event would occasionally share with reporters, that some people had said that the concept that stutterers could actually organize a conference was a little far-fetched.
Even a speech professional in Toronto that I spoke with, as we were starting work (involving self-help groups in Toronto and Edmonton) on the organizing of the event, commented that he was dubious about how much people who stutter could actually accomplish on their own, when it comes to organizing things. What we are dealing with, with regard to such matters, is the power dynamics that come into play whenever people get together to achieve anything of value; this is a topic that fascinates me endlessly.
Note 3: I’ve outlined the treatment strategy that worked for me at a post (and video) entitled: Stuttering – A Listener’s Guide.
I viewed the process of learning fluency as a second language as a technical issue: that is, what specifically do I need to do in order to get the words out smoothly and effectively, as is the standard practice for fluent speakers.
Some people who stutter have no interest in taking such a route. In my case, it was the route that worked for me, given that my stuttering was at times very severe, to the extent there have been occasions years ago when I could not get out any words at all. If you were to say to me, “Well, just got ahead and stutter,” that would not have worked for me. If I can’t get out any words at all, how can I just go ahead and stutter?
The other issue, aside from relearning how to speak, involved what has been called cognitive restructuring. That means, what do I need to do with regard to speaking situations, or speaking opportunities, to ensure that my cognition – my way of framing speaking situations in my mind – is going to allow me to actually apply my fluency skills.
One way to conceptualize such matters is to speak of self-talk, by which I refer to things that we say to ourselves in the course of our waking hours.
For example, if I was facing an upcoming presentation, I might (years ago) have had a form of self-talk that said, “Why did I ever agree to make this presentation?” Every time I might be thinking about the presentation, a feeling of apprehension might occur, and this form of self-talk would proceed.
With cognitive restructuring, you change the self-talk. You think of some alternative self-talk that is positive, and you write it down. In the example at hand, the alternative self-talk might be, “This presentation gives me a great opportunity to see how close I can get to speaking at 220 syllable a minute.”
By adopting such a procedure, if I ever had a feeling of apprehension, I would just repeat the alternative self-talk.
I would regularly record my phone calls, presentations, and the like and then analyze two-minute segments, to ensure that I was applying the skills correctly. The entire process was not unlike the practice that a musician engages in, or an athlete engages in, to ensure that their skills, whatever skills they may be, are kept in top form.
I was never concerned about whether I would be anxious during a presentation. I just knew that so long as I was applying the skills that I was practising everyday, everything would be fine.
On rare occasions when my speech would tighten up, I knew exactly what to do to get back on track.
In the decades that have followed my visit to Edmonton, my skills as a presenter have continued to improve. The application of fluency skills became automatic years ago and I do not spend time thinking anymore about what is required in order to get the words out smoothly and effectively.
Note 4: This is the most important part of this post.
The self-talk procedure described in the previous note involved taking an index card and drawing a vertical line down the centre of it. On one side (I think it was the right side) I would write the recurring negative thought and then on the other side I would write the alternative positive thought. Eventually, I learned to alter negative thoughts without writing anything down, except in rare cases.
There was one case of self-talk, however, that was of such a nature – that is, it had such an enormous impact on me – that it did not occur to me to deal with it using the index-card strategy.
What would happen is this.
Every time I made a fluent presentation to a large audience (I made many such presentations after the July 1987 visit to the ISTAR clinic), a voice inside me would say, during each such presentation: “You’re not supposed to be able to do this. You’re supposed to be falling flat on your face.”
Every time I made a presentation, the same refrain would arise – the same insistent, persistent inner voice, repeating word for word the same refrain.
At first I thought I should see a psychotherapist, to deal with this inner voice. But then it occurred to me, “Maybe if I were to compare notes with other people who stutter, I could figure out what this is about.”
That led directly to me spending two months, July and August 1988 (I spoke to many people during that time, and learned many things), preparing for the launch (in September 1988) of the Stuttering Association of Toronto (SAT). I founded this group so I could compare notes with other people who stutter. We began meeting every two weeks. We drew up a schedule of meetings for a whole year, so that everyone would know when the meetings were going to be.
After the first few meetings, which I led, we arranged for any member of the group, who wanted to, to lead two meetings in a row. We also arranged that speaking time would be shared equally at meetings. Each person would have the same amount of time to speak. We had a shared sense of decision making in the group, and a shared sense of ownership.
After one full year of meetings, a speech therapist who stutters, Tony Churchill of Mississauga, was a guest speaker at one of our meetings. After the meeting during the Q & A, I asked about the inner voice. Tony didn’t miss a beat. He answered at once (and I paraphrase), “What the inner voice is telling you is that you need to accept that some changes have occurred in your life.”
After Tony explained what the inner voice was about, I never heard the voice again. That was for me a most amazing learning experience. It was the inner voice, with its profoundly unfriendly, mocking message, that launched my own career as a volunteer.
By way of additional notes, this time an un-numbered note. On Oct. 7, 2021, I set my iPhone on a stand and recorded a video of my first draft of the answers to the three questions.
I loaded the video to iMovie and then posted it as a private YouTube video; at YouTube I can get an automated transcript (without punctuation; the punctuation and paragraph breaks I can look after later) of the draft, using the Subtitles function available at YouTube.
The transcript and video serve as a starting point for development of a series of drafts of the answers to the three questions. I am looking at the drafts from the perspective of a person who is attending the November 2021 Zoom-based CSA conference.
With presentations as with the planning of conferences and events, it’s great to have the time to plan every step. The quality of the planning has a direct bearing on the quality of the final product.
Among the things I plan for in a presentation is spontaneity: the overall story line (the set of talking points) is planned and scripted but there is plenty of room for ad libbing – for spontaneity. These kinds of details, which all presenters are bound to learn over time, I think, I’ve learned about over many years of presentations.
Everything – or much of everything – I learned about organizing things, I learned through my participation in the Stuttering Association of Toronto. I remember for the 1995 CSA conference in Toronto (we had 201 attendees), as I was walking into the venue (a high-end downtown hotel) with colleagues from SAT, I remarked that “It’s no different from organizing a SAT event. Once the planning is in place, it’s like the conference just runs on its own.”
By way of an update: On Oct. 8, 2021 I viewed a video of Draft 1 of my responses to the three questions and found it profoundly boring.
Thus I’ve decided that telling my personal story is perhaps not the way to go, for this panel. Instead, I plan to discuss an organizer’s perspective, in response to the three questions. No more of “I did this, I did that.” Instead, just a focus on organizational issues.
A subtext is that this is very different from an in-person presentation to an in-person audience of a few decades ago. This is a Zoom session. A different ballgame entirely. We can’t just depend on formative experiences of a few decades ago.
The process I’m describing is nothing new, of course. You try out different things until you find what works. In this case, I will likely put together some slides to go with each of the four-minute mini-presentations, in answer to each of the three questions. Now I’m starting to understand what will work the best.