Early history of the Canadian Stuttering Association

The purpose of the current post is to share some background about the early days of the Canadian Stuttering Association.

CSA had its origins in decisions made at the first-ever Canadian national conference for people who stutter in Banff, Alberta, in August 1991.

Originally called the Canadian Association for People Who Stutter (CAPS), the name was later changed to the Canadian Stuttering Association. The shorter name makes it easier for CSA to publicize its work in media interviews.

Several groups worked together to lay the groundwork for the Banff conference. People had been thinking about a conference for some time. In February 1989, Mike Finlayson, of the Stuttering Association of Toronto (SAT), spoke of his willingness to coordinate a national meeting of self-help groups. The idea was to hold it in Toronto.

In April 1989, during a visit to Toronto, Einer Boberg, co-founder of Edmonton’s Institute for Stuttering Treatment and Research (ISTAR), met with the SAT group and later with the Toronto PFSP group, the Demosthenes Society. At that time many members of Toronto self-help groups were talking about staging a national conference, and forming a national network of self-help groups.

Also in April 1989, Willard Mohr, active with the Ottawa and Toronto PFSP (Precision Fluency Shaping Program) groups, organized a regional meeting in Brighton, Ontario east of Toronto. Willard subsequently moved to Calgary. The Brighton meeting helped lay the groundwork for the Banff conference, as did regional meetings of several self-help groups in Hamilton in May 1990 and in Belleville in July 1991.

Ron Day of Belleville was also active in the networking across Southern Ontario that played a key role in setting the stage for the Banff Conference, the planning for which began a couple of years before the event.

Among the many things that I learned, in those years, was the value of planning, and getting input from as many people as possible during planning.

It’s like making a movie: You need a script, an agenda, a plan. The quality of the script has an impact on the quality of the final product.

When a conference or even is well planned, the big day runs smoothly and the organizers can relax and have a good time along with everybody else.

Planning began in 1989

In July 1989, representatives of SAT and the Alberta Stutterers Association (ASA) met in Edmonton to begin the planning of the first national conference. It was agreed that there would be input from self-help groups across Canada – and that final decisions would be in the hands of an organizing committee in Edmonton, headed by Lyn Kelly.

Early on, the organizers also decided that the conference would involve a variety of treatment centres. It wouldn’t be focused on or connected with just one approach to treatment. Rick Randall of Toronto, whose work involved public opinion surveys, prepared a professional quality survey, which established the level of interest, among self-help groups across Canada, in such a conference. The survey also asked potential attendees to rate different workshop ideas in terms of how interesting they sounded.

Whether a national association emerged from the conference would be determined by all of the groups involved in planning of the conference. A consensus also emerged that the proposed national association would respect the individuality and autonomy of member groups. It would not be an association that told the groups what policies they were expected to follow.

A series of regional meetings in Ontario, prior to the conference, involved meetings in which people would break into small groups to discuss specified topics. Under these conditions, each person at a meeting gets to speak about the same amount of time.

First CSA conference was in Banff, Alberta

At the Banff meeting, a series of plenary sessions – involving all of the 80 or so people at the conference – discussed several questions. People would break into groups of eight people, with the composition of each group determined beforehand to ensure a wide distribution of people. One person from each group would report back to the meeting of all the groups, and the plenary session would then make decisions.

During those sessions, attendees agreed to proceed with the formation of a national network of self-help groups, and to organize national conferences on a regular basis.

Further regional meetings and ongoing contact by phone and fax machine (this was before email) led to development of a governance model for the association. The association would seek representation from all parts of the country, would adopt a “flat-hierarchy” model of decision making, and would seek to alternate conferences between different regions of Canada.

At the next national conference, in Ottawa in 1993, a draft version of the CSA constitution, written by Peter Wyant of Regina, was debated in a series of plenary sessions. The final version included the concepts that CSA would serve as an impartial forum for sharing of information. It would work closely and collaboratively with speech professionals – while maintaining autonomy and independence from speech pathologists and researchers. The constitution also specifies term limits of two consecutive terms for the office of national coordinator. In this way many people over the years would have the chance to lead and CSA wouldn’t depend on one “leader for life.”

Michael Niven of Calgary chaired the plenary sessions at the Ottawa 1993 conference, and prepared the final version of the constitution. He later also arranged for the incorporation of CSA.

International Fluency Association & International Stuttering Association

CSA members were also active in the early networking among self-help groups in the 1990s on behalf of the International Fluency Association (IFA). They were also involved in setting the stage, through international networking, professionally designed surveys, and assisting in development of the constitution, for the International Stuttering Association (ISA):

History of the International Stuttering Association

After the Banff conference, CSA conferences were subsequently held in Toronto (1995); Vancouver (1997); Montreal (1999); Calgary (2001); Toronto (2003); Edmonton (2005); and Toronto (2007). There have been conferences since that time but I’ve lost track of such details as I’m not involved with organizing of CSA events or conferences.

Jaan Pill, who had founded the Stuttering Association of Toronto in 1988, served as the first national coordinator for CSA. In 2000, David Block, who had attended the CSA 1995 conference while he was a university student in Ottawa, became the next coordinator. Shelli Teshima, who had been active as a volunteer with self-help groups in Western Canada, took over as coordinator in  2005. In subsequent years, Lisa Wilder has also served as the coordinator as  recall. The most recent person to take on the coordinator role has been Andrew Harding.

CSA is entirely run by volunteers.

For more recent information about CSA, I strongly recommend a visit to the Canadian Stuttering Association website. The organization is also active on Facebook and Twitter.

Stuttering – A Listener’s Guide

Some years ago, I worked with film editor Stephen Toepell to put together an online video called Stuttering – A Listener’s Guide. The video was based on a talk I gave in 2011 at the North York Kiwanis Club.

Below are some key points [with an update regarding the total number of people who stutter in Canada] from the talk. I imagine some things among the key points may be out of date. However, I also imagine many of the things that I have outlined remain valid even these few years later.

As I’ve been reading through these points, it has occurred to me that life takes us too all kinds of unique places. I’m really pleased that I’ve had the opportunity, over the past twenty five years, to compare notes with other people who’ve been through experiences that on many levels are similar to me own. I have learned so much from the realization that each person has a unique experience, in being alive, and we each have so much to learn from each other – if the willingness to learn is there.

The converse of that, the other side of the coin, is that some people find it easier than others to consider that what applies to one person does not apply to another. My way of seeing may make sense to me, but my way of seeing doesn’t mean that I can figure out another person’s life experiences. Your way of seeing makes sense to you, based on your life experiences, but you may not be in a position to figure out what my life experiences have been.

A more positive attitude toward those of us who stutter

Twenty five years ago, I was involved in the founding of the Canadian Stuttering Association, or CSA for short. CSA is run entirely by volunteers, and I am one of them.

Research indicates that, in countries around the world, stutterers are typically perceived as shy, nervous, introverted, fearful, and weak. There is a widespread public belief that stuttering reflects psychological difficulties. There is a lack of accurate information about the nature of stuttering. Movies in which stutterers are made the butt of jokes serve to reinforce these kinds of attitudes. The movie The King’s Speech, in contrast, featured a positive portrayal of someone who stutters. This movie has done wonders to raise public awareness about stuttering.

A number of things can lead to a more positive attitude towards people who stutter: If we encounter the real stories of people of who stutter, our attitudes will become more positive. The King’s Speech is based on such a story. If we are in regular contact with a colleague at work who stutters, our attitudes towards people who stutter will tend to improve. If we know what to do when speaking with a person who stutters, we’re also likely to develop a more positive attitude.

My own story

I want to briefly share my own story.

I began to stutter at the age of six. In my late teens and early twenties, I stuttered severely. Sometimes I could not get out any words at all. One time, I phoned someone and tried to say hello. I found the “H” sound at the beginnings of words especially hard to say. After about thirty seconds or so of trying to say hello, I just hung up the phone, without saying a word.

When I was thirty, I attended a three-week stuttering therapy program in Toronto. I attained some level of fluency as a result.

About a week after the Toronto clinic, however, I was speaking with a friend on the phone, and my newly acquired fluency skills flew out the window. I did retain enough of these skills, however, to graduate from a faculty of education. In the early years of my career, I taught small special education classes in Toronto.

May 4, 1987 Toronto Star article changed the course of my life

Eleven years later, on May 4, 1987, I read an article in the Toronto Star describing a stuttering treatment program in Edmonton. In July of that year, I flew to Edmonton and attended a three-week treatment program at the Institute for Stuttering Treatment and Research, or ISTAR for short.

Einer Boberg and Deborah Kully of Edmonton developed this program in the mid-1980s. The program has been continuously updated ever since. In Edmonton, I relearned how to speak. I like to say I learned fluency as a second language.

Fluency skills

The clinic [at that time] taught five fluency skills.

These included:

• Easy breathing
• Smooth blending of syllables
• Light touches on consonants
• Easy onset of voicing
• Prolongation of vowel sounds

I knew from experience that I would have to work hard to maintain these skills after I left the clinic. I practised these skills every day for over four years. I recorded large numbers of conversations and phone calls, and analyzed two-minute segments of them, to ensure that I was applying the skills correctly.

“Not supposed to be able to do this”

Back in Toronto, I made many presentations. Every time I would be making a fluent presentation to a large audience, however, 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.” That voice really bothered me.

At first I thought I should get some psychotherapy. But then I realized that what I needed to do was to compare notes with other people who stutter. That led me to start a local self-help group in Toronto. Our first meeting was in September 1988, at the North York Central Library.

A year later, a speech therapist who stutters, Tony Churchill of Mississauga, spoke at one of our meetings. At that meeting, I asked him about the self-talk that was bothering me each time I made a speech. Tony Churchill told me that this inner voice was telling me that I needed to adjust to some changes that had occurred in my life. After that, the inner voice never bothered me again.

What has worked for me will not work for all people who stutter

My involvement with a local Toronto group led me to become active in the stuttering community. I was a co-founder of the Canadian Stuttering Association in 1991, of the Estonian Stuttering Association in 1993, and of the International Stuttering Association in 1995. In 1995, I switched from teaching special education classes in Toronto, and began teaching regular classes at a school in Mississauga.

What has worked for me will not work for all people who stutter.  About 80 percent of stutterers can achieve lasting benefit from the kind of speech therapy that I encountered. Some people who stutter, about 20 percent, for reasons having to do with how their brains are wired for speech production, are not able to attain the same lasting benefit. In that case, significant benefit can be derived from a “stuttering modification” approach whereby a person learns to reduce the severity of her or his stuttering.

The Canadian Stuttering Association is a registered, incorporated, non-profit organization. We offer an impartial forum for the sharing of information about stuttering.

We do not endorse or reject any particular way of dealing with stuttering, except in cases where someone alleges that they have a sure-fire “cure” for stuttering. As a rule, there is no cure for stuttering.

Many stutterers can learn to control their stuttering, so it does not interfere with effective communication. If we are able to achieve control over our stuttering, it means that we are able to be more productive and reach our full potential. The earlier a person gets treatment, the better. Not getting any treatment at all is also an option.

The causes of stuttering are unknown. The evidence to date suggests that stuttering is a neurological problem affecting speech production. There is no evidence that the causes are emotional or psychological. There is no evidence that stutterers share particular personality characteristics.

The King’s Speech

Will The King’s Speech lead to a change in public attitudes about people who stutter? At this point, we don’t know. Research is now under way to determine the answer to that question.

Perhaps the most salient feature of stuttering is the avoidance of speaking situations.

When we stop speaking, we remove ourselves from the mainstream of life. Stuttering affects about one percent of the adult population – about 360,000 Canadians. About five percent of young children stutter during the years they are learning to speak. More boys are affected than girls. Most young children outgrow their stuttering – but some do not.

Our advice to parents is that if your child stutters, you should seek assessment by a speech therapist who specializes in the treatment of stuttering. For preschoolers, effective programs are available, such as the Lidcombe Program.

A database of speech therapists, from across Canada, who are trained in the Lidcombe Program, is available at the website of the Montreal Fluency Centre.

Speaking with a person who stutters

What can you, as a fluent person, do when speaking with a stutterer?

• Use natural eye contact and facial gestures to show you’re listening.
• Look the person in the eye every once in a while, even when that person is struggling with words. That tells us we are still part of the human race.
• Give the person enough time to finish his or her own sentences.
• Use a relaxed pace in your own speech, but not so slow as to sound unnatural.
• Avoid remarks like “slow down” or “take a deep breath.” Such advice is not helpful.

Aside from movies, books offer another great way to share stories about stuttering. Karen Hollett of Yellowknife has written a children’s book, Hooray for Aiden, about a girl who stutters. The central character, Aiden, faces the challenge of speaking out in front of her class, after arriving at a new school. This book, which is driven by a powerful and compelling story, has been sold widely to school boards across North America. I have read the book to hundreds of schoolchildren in visits to schools across the Greater Toronto Area over the past decade.

By way of summary, The King’s Speech is a story about a King who shows courage in dealing with the fact that he stutters. The sharing of accurate information helps to counter the myths about stuttering. Children’s literature and social media can play a strong role in the sharing of our stories. The Canadian Stuttering Association offers an impartial forum for sharing of information.

[End of overview]

Speaking notes – August 2001 Calgary keynote presentation

In the event you would like to read such a document, the speaking notes for a keynote presentation by Jaan Pill at a CSA conference in Calgary can be accessed here:

aug-24-2001-calgary-keynote-jaan-pill

Presentations along similar themes were delivered at two international events in those years. One keynote was at a world congress, which took place in Ghent, Belgium in the 1990s, of the International Stuttering Association. Another keynote was a world congress of the International Fluency Association, in Montreal in the early 2000s.

In the early years I was also responsible for media relations on behalf of CSA. We had many national and international media interviews, on TV, radio, and in newspapers. Much of what I know about media work I learned in those years. We are among other things dealing with stereotypes and stereotyping. We can best address such topics by being aware of what the research says regarding attitudes toward people who stutter, and what it says about how best to address the challenge of changing the attitudes for the better.