About the presenter: Lisa Wilder is a professional graphic designer who has lived in Ottawa, Vancouver and currently Toronto. She does volunteer work as the webmaster for the Canadian Stuttering Association.
About the presenter: Carla Di Domenicantonio is a registered speech-language pathologist in Ontario, Canada. She has worked in the field of stuttering and fluency disorders for over 25 years serving preschool, school-aged and adult populations in hospital and private clinic settings. Eager to support the advancement of cluttering amongst colleagues and the general population, Carla became the Canadian SLP representative for the International Cluttering Association (ICA) in 2007.

You can post Questions/comments about the following paper to the authors before October 22, 2010.

Creating a National Support Organization for Stuttering: the Canadian Experience

by Lisa Wilder and Carla Di Domenicantonio
from Canada

This paper provides a brief history of the national self-help/support movement in Canada and discusses the challenges facing members who strive for a vibrant and growing organization. The authors invite readers to comment, share their experiences in establishing a national self-help/support organization, or provide suggestions on how to address the current challenges faced by the Canadian Stuttering Association.


National support organizations for stuttering have been part of the Canadian landscape since 1984. Canada's first national self-help/support organization, Speak Easy Inc., was established by Mike Hughes, a stutterer residing in St. John, New Brunswick. The Speak Easy mission was to provide information and support to adult stutterers, parents of stuttering children, professionals in the field, and the general public.

There were many challenges in these pre-Internet days. Informing stutterers, professionals, families and the general public of the existence of such an organization was one of them. All communication took place via the post office and public service announcements on select radio stations who offered them at no cost to non-profit groups. The organization nonetheless reached thousands of people and boasted more than 1100 dues-paying members from across the country at its pinnacle (Hughes, 2006).

Funding was often a concern. Fortunately Mike was successful in obtaining financial donations, sponsorships and funding grants from various federal and provincial government agencies, corporations, and funding foundations. In the summer of 1987, an emergency grant from the province of New Brunswick saved Speak Easy from closing its operations. There was financial uncertainty with each coming year.

Mike as Executive Director managed all aspects of the organization: providing information over the phone, developing written information pamphlets, setting up a resource library from which people could borrow (by mail), and publishing a monthly newsletter, Speaking Out, with interesting articles and advice for parents and adults. A web site was eventually added to the mix. A few local self-help/support groups grew out of Speak Easy with Mike's encouragement and support. National stuttering conferences were also held.

In December 2006, after 22 years of persistence, Mike published the 275th and final issue of Speaking Out. This was the closing curtain for Canada's first national support organization for persons who stutter and their families.

During this same time, in 1991 and independent of Speak Easy, a first national conference for people who stutter took place in Banff, Alberta. The conference came about as a result of interaction amongst members of various independent local self-help/support groups from the provinces of Ontario and Alberta. It was at this meeting that a second national self-help organization, the Canadian Association for People who Stutter (CAPS) was formed. The vision was that CAPS would form a national network of self-help/support groups and organize biennial national conferences to bring these groups together in different parts of the country. More recently the organization changed its name to the Canadian Stuttering Association. With the cessation of Speak Easy in December 2006, the Canadian Stuttering Association became the only national stuttering self-help/support organization in Canada.

The Canadian Stuttering Association adopted a governance model that would include representation from all parts of the country and utilize consensus-based decision-making, with a national coordinator in the lead role. The national coordinator position was limited to two consecutive terms to avoid having a single leader over a long period of time and to provide other members with the opportunity to lead the organization. A constitution was drafted and finalized in 1993. The Canadian Stuttering Association became part of the International Fluency Association and played a noteworthy role in developing that organization.

Under the leadership of three separate national coordinators, the Canadian Stuttering Association proceeded to develop a quarterly newsletter and to establish a presence on the Internet. It held biennial national conferences in various parts of the country from 1991 to 2007 and printed a few educational brochures.

To this day, all Canadian Stuttering Association positions are volunteer positions that rely on the talent and dedication of various members and their ability to work well together. There is a small membership fee which is waived when necessary. Paid memberships have averaged in the range of 150-200 people over the years. National conferences have their own dedicated fund-raising. Corporations, charitable organizations, and even members help support these events.

The Canadian Stuttering Association Today

The Canadian Stuttering Association is currently emerging from a brief period of decreased activity. The slow down occurred due to an extended vacancy of the national coordinator position. The previous coordinator resigned in August 2009 after two consecutive terms, and surprisingly board members did not respond immediately to fill the national coordinator role. No recruitment announcement was made and no one volunteered to assume the role, even temporarily. The general membership did not seem to react to the change either. The organization coasted, getting by on minimal activity, until fairly recently.

The "re-awakening" of the Canadian Stuttering Association is proceeding steadily through the generous time and skill donations of a few board members who are committed to returning the organization to at least its previous level of activity. In 2009, the person who was the first national coordinator for the organization re-assumed the role he once held for 12 years. Three priorities have been to resume publication of the newsletter on a quarterly basis; to develop and maintain an updated website; and to plan the 10th national conference in Vancouver for the summer of 2011. All three projects are proceeding according to plan, but many challenges remain for the future.

The Challenges That Lie Ahead

Our first and most important challenge is in finding a new person to assume the national coordinator role, not because the current coordinator is doing a poor job, but because he held this role for many years in the early stages of the Association and recently stepped in again after the position sat vacant for an extended period of time. Naturally, we hope for someone with fresh new ideas and loads of energy and ambition - someone who can motivate and engage members, government officials, corporations, stuttering treatment clinics, the media and the public. Ideally that person would be someone who stutters or the relative of someone who stutters. The real challenge here is that the national coordinator position is a volunteer position. Time, skills and talent are donated in one's "spare" time, after work and family responsibilities are taken care of. Coordinator duties fall to the "after" after hours, which can be inefficient and slow, and lead to frustration and loss of focus and purpose. A paid position is not possible at this time without the required financial resources. Past attempts to secure funds have not been successful and efforts to obtain funding have not been kept up. It would also be difficult to attract anyone to this role with temporary funding that could disappear from one year to the next. Ideally, a permanent source of funding providing adequate remuneration would attract more applications and a wider selection of prospects. Strong and secure leadership could take the organization to new levels of accomplishment.

A second challenge is in resurrecting national and local interest and participation in the Association, its self-help/support groups and its conferences. Local support groups seem to be struggling with low attendance and membership and many have had to discontinue meeting over a period of time. While seemingly interested in the activities of the Association, few young people are joining or participating. Many current board members are long time members of the Association who have already donated thousands of hours to the activities of the organization. New tasks tend to fall on their shoulders as well. Renewing members have also tended to be long time supporters. Without new, younger members the organization could eventually cease.

The reason for the lack of interest and participation amongst younger adults is unclear. Is it possible that there is greater acceptance and tolerance of stuttering in Canadian educational institutions and workplaces decreasing the need for an organization that advocates for individuals who stutter or provides emotional and social support? That is a nice thought.

The influence of the Internet and social media are not to be discounted. Accessing stuttering information and resources in the comfort of home, or whenever there is a spare moment, is much more efficient and less demanding than attending a meeting where you might have to listen to or help others for a part of the time. The Internet and social media also provide a level of anonymity and freedom that face to face contact does not. It may be less threatening for some to express themselves through written words - and, disclosure or full disclosure of stuttering becomes optional.

Today's world keeps us occupied and busy. Both our time and financial resources are stretched out thin. Perhaps the small yearly membership fee is too much to ask of people who must carefully prioritize their dollars, and time. The Association has never denied membership based on the ability to pay the membership fee.

Without increased participation at the leadership and membership level, it will be difficult for the Canadian Stuttering Association to continue to grow and fulfill its mission of providing a national network of local self-help/support groups and organizing national conferences that would bring these groups together every two years. Without participation and face-to-face interaction, the organization risks becoming a web based operation, helping and supporting people through the computer. That, too, has its challenges.

The Next Steps

We are interested in hearing about other countries' struggles and successes in establishing and maintaining national self-help/support organizations and welcome readers to comment on the Canadian predicament and on how the Canadian Stuttering Association might proceed to fulfill its mission in the upcoming decade.

We invite readers to visit the Canadian Stuttering Association website at www.stutter.ca and the Facebook fan page at: http://facebook.com/pages/Canadian-Stuttering-Association/111972052148483

Reference & Acknowledgement

Hughes, Mike (2006). Au Revoir. Speaking Out, Vol. 23, No. 2, pp. 1 - 6.

We wish to acknowledge and thank Jaan Pill for providing historical information about the Canadian Association for People Who Stutter and the Canadian Stuttering Association

You can post Questions/comments about the above paper to the authors before October 22, 2010.

SUBMITTED: September 1, 2010
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