Self-Help and the International Scene
International Stuttering Association, Toronto
During 15 years of volunteer work, the author has been involved in the founding of the Stuttering Association of Toronto (1988), the Canadian Association for People Who Stutter (1991), the Estonian Association for People Who Stutter (1993), and the International Stuttering Association (1995). Key concepts in this paper include collaboration, development of a sense of ownership, leadership succession, data- orientation, impartiality, clarity in definition of terms, and growth and renewal. The paper defines terms related to self-help, and describes how research on the sociology of self-help offers a framework for analysis of stages of growth in stuttering self-help associations.
I have been involved in volunteer work on behalf of people who stutter for the past 15 years. In my day job I work as an elementary school teacher. I will discuss how I got started in volunteer work and what I have learned. I will also discuss the sociology of self-help, the process of outreach, and the emerging roles of three international associations dedicated to the interests of people who stutter.
Things I have learned
I have learned seven key things in my volunteer work:
- Collaboration. I have learned that many of our most important projects are too big for one or two people to do on their own. For example, I strongly support the anti—bullying program that Marilyn Langevin (1997, 1998; Langevin et al., 1998) has created. Her approach, like that of Barbara Coloroso (2003), brings together so many groups — the children, the school, and the community. One or two people, on their own, can do little to address problems such as teasing and bullying of people who stutter.
As people who stutter, our potential collaboration partners — who may or may not also be people who stutter — include (among others) clinicians, treatment efﬁcacy researchers, sociologists, economists, statisticians, pediatricians (e.g. Mel Levine, 2002), child psychiatrists (e. g. Bruce Perry, 2002), equity consultants (e. g. Trevor Wilson, 2000), Alexander Technique teachers (Pill, 2000a) and consumer and disability advocates.
- Ownership. In a successful group, each member has a strong sense of ownership of the group. Each person in such a group knows that she or he has a meaningful say in decision—making. Such input might involve responses to professionally designed surveys, input at membership meetings, ongoing consultations with boards of directors, and casting of votes on critical issues.
- Leadership succession. It is good to plan ahead, so that a group will continue to grow long after the founder of the group has moved on to other things.
- Data-orientation. A data-oriented approach to gathering of information can help us reach our goals. For example, I strongly support efforts by Scott Yaruss (1998) among others to explore the efﬁcacy of therapy programs such as ones offered by the Stuttering Foundation of America. Another strategy that warrants support is economic analysis of the effects of stuttering including lost productivity, and the economic beneﬁts of effective treatment (Weidig at al., 2003). Such an analysis would assist applicants for research grants and document, for government ofﬁcials, the economic beneﬁts of effective treatment. The ideal person for such a study would be an economist experienced in cost/ beneﬁt analysis.
Similarly, I have learned that it is useful to arrange for a survey professional to assist in design of surveys for organizing of conferences and founding of self-help associations. I designed an evaluation survey for a panel on stuttering at the 1992 International Conference on Self-Aid/Mutual Aid in Ottawa, a conference documented by Lavoie et al. (1994). Arun Khanna, a self-help colleague who had recently attended a seminar on survey design, informed me at that conference that my amateur survey would yield minimal useful data about the panel. I agreed, and since then, the surveys I have been involved with have included a strength-of-agreement scale and other features suggested by Rick Randall, a self—help colleague employed as a professional market researcher.
- Agreement and disagreement. You and I will agree about some things, and disagree about others. Ideally, a self-help group provides an impartial forum for exploring all available points of view. While maintaining such a forum, it is also possible for self—help associations to share experiential knowledge through research of the kind conducted by the German Stuttering Association (Pape—Neuman et al., 2003) and the US—based National Stuttering Association (Yaruss et al., 2002).
A good model for data—based approaches to protecting the interests of consumers, including consumers of stuttering treatment services, is provided by Consumer Reports www.consumerreports.org in the United States and the Automobile Protection Association www.apa.ca in Canada. Such organizations provide a valuable service for consumers who seek impartial information before they open their wallets. They offer a model for what self—help associations, acting independently from providers of stuttering treatment services and products, can potentially offer to consumers.
I would hope that, in years ahead, we might see more stuttering treatment efﬁcacy reports by speech professionals working in collaboration with self—help groups. I would hope too that we might see efﬁcacy reports by self-help groups in collaboration with other professionals including, for example, statisticians and market researchers, who would not be likely to have a vested interest (or appearance of such an interest) in the outcomes of such research. As consumers, people who stutter need reports and information from a wide range of sources in order to get the best possible "bang for the buck."
- Clear deﬁnitions. We need to take care in how we deﬁne things, so we can be sure we are talking about the same things. For that reason I support the efforts of Ann Packman and Mark Onslow to develop a behavioral data language of stuttering (Packman & Onslow, 1998). It is also useful to deﬁne clearly what we mean when speaking of ﬂuency shaping, given that programs that share this label may differ in key features including the naturalness of the speech patterns associated with them (Pill, 1988).
- Growth and renewal. It is wonderful to see growth and renewal of any ldnd. Some programs appear to stay the same while some change continuously. I support the concept that speech pathology students, when ﬁrst entering the stuttering treatment ﬁeld, would be introduced in some practical way to the process of ongoing updating of treatment programs, and would not be told that some program, which has not been changed for 30 years, represents the state of the art when it comes to stuttering treatment.
I became involved with volunteer work entirely by accident. I like to say that the reason why everything worked out so well for me was that I had no idea what I was getting into. The story began in July 1987, when I attended the three-week Comprehensive Stuttering Program developed J 4 Theory, research and therapy in ﬂuency disorders by Einer Boberg and Deborah Kully at the Institute for Stuttering Treatment and Research in Edmonton, Canada. At the Edmonton clinic I learned to speak in a new way, after many decades of moderate to severe stuttering. During severe stuttering, I at times could not make any sounds out at all. I like to say I learned ﬂuency skills as a second language.
After I had learned those skills, I began to make presentations to large audiences. This was something I was unable to do before. But I found it hard to adjust, psychologically, to the fact I could now engage in public speaking. Whenever I made a presentation, a voice inside would say, "You’re not supposed to be able to do this. You’re supposed to fall ﬂat on your face.” I tried talking about this with my non—stuttering friends, but they could not understand the problem. In the end I decided that, to help myself adjust to this new level of ﬂuency, I needed to compare notes with others who stutter.
In order to meet other people who stutter, I formed a self—help group, the Stuttering Association of Toronto, in 1988. In 1990, I delivered a series of Lectures in Estonia (in Estonian, my native language) describing Western approaches to stut:ering treatment. That led to the founding of the Estonian Association for People Who Starter in 1993. In 1991, I assisted in the founding of the Canadian Association for People Who Stutter. Around that time, I also served as chair of the IFA support groups and consumer affairs committee. That position enabled me to establish contacts with many of the leaders of national self—help associations around the world.
In 1995, acting on my belief that people who stutter need to speak on their own behalf at the international level, I assisted in founding of the International Stuttering Association and have maintained a strong interest in the development, revision, and interpretation of its constitution. In recent years, as a member of the ISA outreach working group, I have offered consultation for people involved in the founding of national self—help associations in African countries including Burkina Faso, Cameroon, anc. Uganda. I am also a member of the ISA advisory board, and am the ofﬁcial ISA spokesperson. However I am not speaking in that capacity in this ‘paper. My comments are my own, and do not necessarily represent the views of any self—help association. Einer Boberg played a key role in the launching of my career as a volunteer (Pill, 1998). He arranged a meeting between self—help groups from Toronto and Edmonton, which began the planning process for the ﬁrst national conference of people who stutter in Canada. He suggested Banff, Alberta as a site for the conference, which was ﬁnally staged in that location in August 1991. It also happened that many of the co-founders of CAPS were graduates of the ISTAR program.
Deﬁnitions of terms
My topic is self—help and the international scene. I will begin by offering a deﬁnition of self- help and related terms. Two of the key resources with regard to self—help at the international level are Tomofumi Oka of the department of social work at Sophia University in Tokyo and Thomasina Borkman of the department of sociology and anthropology at George Mason University in Fairfax, Virgina, USA. A search for their names using an Internet engine will lead to many valuable online articles (e. g. Oka & Borkman, 2000).
A widely known deﬁnition of self—help groups emerged from a national workshop on self—help and public health that the United States Surgeon General set up in 1987 (Surgeon General workshop on self—help and public health, 1988). At that workshop delegates arrived at a consensus regarding a deﬁnition of self—help groups. Starting with that consensus, and with minor changes in wording, here is a deﬁnition I like to use:
- Self—help groups are self-governing groups whose members share a common speciﬁc concern or situation and give each other emotional support and material aid, charge either no fee or only a small fee for membership, and place high value on experiential knowledge in the belief that it provides a special understanding of a situation.
- In addition to providing mutual support for their members, such groups may also be involved in information exchange, public education, material aid, and advocacy.
Brieﬂy, here are some additional deﬁnitions from Schubert & Borkman (1994) and Borkman (1999): Experiential knowledge refers to information and wisdom gained from lived experience, as contrasted to lay knowledge learned from everyday sources, or professional knowledge. Experiential authority is the certainty that individuals and groups develop over time with regard to their experiential understanding. Meaning perspective is a frame of reference or way of looking at the world. Social technology is the structuring of the social relations by which members of self- help groups experience change. A sociological research methodology, developed for the study of self—help groups, applies the concepts of experiential learning, experiential authority, meaning perspective, and social technology. This methodology can be applied to cross-cultural study of self- help associations that deal with stuttering.
It may be noted that sometimes self-help group is used as a synonym for Support group. Within the wider self-help movement, however, of which self-help groups for stuttering are an integral part, a consensus has emerged that a self-help group is a group controlled by its members, whereas a support group means a group where the ultimate responsibility for group management lies not with group members but with supporting professionals.
Research about self-help
Extensive research has been conducted about self-help groups of all kinds, including for people who stutter. Thomasina Borkman has studied self-help groups for people who stutter for over 30 years. She has studied stages of growth experienced by individuals in self—help groups, and stages experienced by self—help groups themselves. For heuristic purposes, she has proposed a three-stage process to describe these stages.
For individuals, in Borkman’s model we can think of a person progressing through one or more stages. The ﬁrst is the Victim stage, where people feel shattered, vulnerable, and alone. The second is the Survivor stage, where members have moved to a stronger place where they feel conﬁdent of their experiential knowledge and recognize how their experience is helpful to others. A third, Mature, stage occurs for some people. They become certain of their experiential understanding over time and develop experiential authority, which can evolve in two ways. Some people (the Thrivors) grow and thrive, continuing to learn and change while remaining ﬂexible in their thinking. For others (the Dogmatics), the certainty of what they know from personal experience leads them to become dogmatic.
Borkman also speaks of three stages of growth for self-help groups. First is the Fledgling stage, in which the group has no clear meaning perspective or frame of reference. Second is the Developed stage, in which the group has created a workable meaning perspective or way of looking at the world, and has developed an organized structure. The third, Mature, stage can take at least two forms: an Open Learning group, which remains ﬂexible and open to new learning, and a Closed Dogmatic group where the meaning perspective is largely ﬁxed and the group believes it has the ultimate “truth” about solving its problem.
Empirical research may show a different number of stages or different characteristics for a stage. As well, some of the labels that Borkman uses might beneﬁt from reﬁnement. For example, I would prefer to speak of the ﬁrst stage as an Entry-level stage instead of a Victim stage. As Well, the term Dogmatic may be problematic.
Borkman has studied several American stuttering self-help groups that developed a meaning perspective focusing on avoidance-reduction and self—acceptance. More recently, the Canadian sociologists Michael Petrunik and Thomas Klassen (Petrunik & Klassen, 2003) have studied Canadian groups whose leaders are often graduates of ﬂuency—shaping programs, and whose meaning perspective includes an emphasis on learning and maintenance of ﬂuency skills, within a framework that also includes self-acceptance and avoidance-reduction.
Application of Borkman’s model
Borkman’s model suggests a framework that can assist in delineating, and reﬂecting upon, the stages of growth in varied self-help associations. For example, I was impressed by remarks by Mark Irwin of Australia, who is chair of the ISA board of directors, at a panel discussion on self-help at the 1997 IFA World Congress in San Francisco (Irwin, 1998). Many years ago, graduates of the Smooth Speech program in Australia formed a national self-help association, the Australian Speak Easy Association (ASEA). In its early years, ASEA was dominated by the philosophy of Smooth Speech and the speech professionals who taught this program. In recent years, however, ASEA has promoted a more expansive self-help focus, as a way to supplement the Smooth Speech pattern of speaking.
It may be added that, in many cases, a self-help group that focuses on a particular treatment approach eventually begins to explore other approaches. This broadening of outlook is perhaps inevitable when people meet regularly, and compare notes about different ways of dealing with stuttering. Sometimes, as in the case of the Canadian Association for People Who Stutter, and the International Stuttering Association, a self-help association or network determines at the outset that it seeks to offer an impartial forum for sharing of information, rather than being aligned with a particular approach to dealing with stuttering.
Bryan Hunt, active in the early years of the Association for Stammerers (AFS) which later became the British Stamrnering Association (BSA), has shared reﬂections concerning early years of the stuttering self-help movement in Great Britain (Farr, personal communication, Oct. 17, 1995). Hunt has noted that when it began in 1968, AFS focused on exploration of varied group therapies without professional input. The association took a more deﬁned shape as a nationally organized self-help group in 1978, when self-help enthusiasts and a handful of interested speech therapists set up a formal constitution. This led to charity status for the association, the hiring of paid staff, and a substantial expansion of activities.
A particular area that warrants sociological analysis is the transition that occurs when a self-help association ceases to be an all—volunteer association and begins to hire paid staff. Paid staff can get more work done than volunteers, but their presence also changes the structure of an organization. As Michael Sugarman has remarked, “Once you have to pay people you change the whole framework” (Sugarman, personal communication, Aug. 10, 2003).
I have met several key people, including Laurent Bouchard (Pill, 2000b) and Frederick Murray (1980), involved with some of the earliest international contacts among people who stutter. Their insights are of much value to sociologists — as are archives from varied self-help associations. If you know of a person or group wishing to make their archives available for sociological research, please contact Michael Petrunik or Jaan Pill.
ELSA, IFA and ISA
These associations form an informal network. Although it has no formal name and no formal leadership structure, the network plays an important role in coordinating major international efforts on behalf of people who stutter. For example, discussions among the three associations led to the designation of October 22 as the date for the annual International Stuttering Awareness Day, and to the decision that 2004 would be the International Year of the Child Who Stutters.
As well, if we are to initiate international research projects involving collaboration between self-help associations and researchers, as discussed by Weidig et al. (2003), the coordination of such efforts will require discussion among members of this informal network. Similarly, when national and international associations are planning conferences or congresses, it is useful for ELSA, IFA, and ISA to coordinate the scheduling of such events. When each meeting has its own time slot, each association will likely have more people attending their meeting than would otherwise be the case.
The International Stuttering Association is a not-for-proﬁt, international umbrella association made up mainly of national self-help associations. It enables people who stutter to speak for themselves at the international level. As a result of professionally designed surveys, the One Voice newsletter, the ISA website, and ISA membership meetings at each world congress, each ISA member association has opportunities to develop a strong sense of ownership with regard to ISA. At the board—of—directors level, procedures have evolved regarding decision—making, such as when to hold a formal Vote, and how to proceed when tabling a motion. Clarity regarding ISA board-level deliberations is important, given that individual ISA board members, from countries around the world, demonstrate a diversity of perspectives on operating procedures for boards of directors.
I wish to thank Stefan Hoffmann (2003), vice-chair of the ISA board of directors, who has provided the following. overview of ISA outreach efforts. ISA has been growing in membership, through the efforts of the ISA outreach group, which Stefan Hoffmann chairs. With regard to outreach, in developing countries, stuttering therapy does not have high priority in the national health care systems. Millions of people who stutter live in societies where there is virtually no knowledge about ﬂuency disorders, and where adequate treatment is unavailable. This is all the more tragic because the self-help concepts existing today represent a cost-effective and easily accessible method of helping people who stutter to help themselves.
Our attempts at outreach must take account of cultural differences. For example, Stefan Hoffmann has found that some written material about stuttering from Germany, such as stories for children featuring a cartoon character‘ named Benny who stutters, will not reach a receptive audience when translated for Chinese readers. Stories with a given meaning in one culture will not necessarily convey the same meaning in another culture.
Professionals, who have often played a key role in promoting the self-help concept, can offer much assistance in the outreach process. They have played a valuable role as initiators of many of the self-help groups that have been._set up around the world in the past 30 and more years. The International Fluency Association with its Worldwide membership provides an excellent avenue for establishing contacts with this target group.
For news updates concerning the Outreach working group, and the role that speech professionals and researchers can play, please refer to the issues of One Voice available on the ISA website at www.stutterisa.org/. The ISA newsletter provides many inspiring ﬁrst—person accounts of individuals involved in founding of new self-help associations in their respective countries. It is also inspiring to read how many associations have arranged to translate a book about stuttering by Eelco de Geus (1999) into their respective languages.
I also wish to thank Edwin Farr, chair of ELSA, who has provided the following overview of the European League of Stuttering Associations. Founded in 1990, ELSA is a European non- government organization that can access European funding for projects, as it has been doing for the past 13 years. ELSA has aligned itself with the disability sector, using the solidarity of the disability movement to raise awareness of stuttering.
ELSA considers the development of young people who stutter as very important. Such work can provide new blood for the European stuttering associations, many of which do not have young people on their boards. ELSA Youth Meetings offer instruction on the workings of national stuttering associations, as well as workshops and other well-planned activities over six days. AS well, ELSA fosters links with East European associations and smaller ones just starting up. For details, consult the ELSA website at www.elsa.info/. 18 Theory, research and therapy in ﬂuency disorders
Both ISA and ELSA have been involved with the International Project on Attitudes about Stuttering (IPTAS) initiated by Ken St. Louis et al. (2001). The project, which involves international collaboration between researchers and people who stutter, seeks to ﬁnd out if there are differences in how stuttering is perceived in countries around the world. Since 2001, I have applied preliminary ﬁndings from the IPAT S project in media interviews about stuttering. I have spoken with reporters about the things that non-stutterers can do (e.g. maintain eye contact, don’t complete sentences) when speaking with people who stutter. I began to speak of such things because telling non—stutterers how to interact with stutterers may be a feasible method to enable them to alter their stereotypical perceptions about people who stutter (St. Louis, 2001).
Much work remains to be done with regard to misperceptions about people who stutter. Frequently replicated survey-based research ﬁndings indicate a widespread belief, in countries around the world, that stutterers are shy, nervous, introverted, fearful, and weak, and that stuttering reﬂects psychological difﬁculties (St. Louis, 2001). The IPATS project offers a comprehensive approach to documentation of such stereotypes, and development of survey instruments to document the effectiveness of public education programs aimed at replacement of such stereotypes with accurate information. I have also been much interested to learn, from research by Thomas Klassen (2001, 2002) using an innovative survey method, that those non-stutterers who have on—going contact with at least one stutterer have less stereotyped attitudes than the general population.
I will add a concluding comment regarding growth and change. I want to thank Deborah Kully for providing the following overview of changes in the ISTAR program in Edmonton. Based on developments in the psychology and speech pathology literature, client feedback, clinician experience and observation, formal long-term outcome studies (e.g. Langevin & Kully, 2003) and informal qualitative evaluation of client experiences, since July 1987 (when I attended the clinic) ISTAR has seen:
- Further development of the maintenance program and cognitive-behavioral component of the program,
- Increased focus on program individualization including regularization of practice in languages other than English, hiring interpreters when necessary, incorporation of self- ratings, and differential weighting on ﬂuency enhancement as compared to stuttering modiﬁcation
- Enhanced training in relaxation/tension management skills
- Enhanced family program including inclusion of family members in transfer activities
- Development of a distance maintenance program using phone and/or video conferencing
- Programming for clients whose needs are not met in an intensive program
Such ongoing change and reﬁnement, in a treatment program or any other endeavor, is a source of tremendous inspiration for me.
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