Petrunik, M. & Klassen, R. T. (2003). A Sociological Analysis of Stuttering and Stigma: From Clinical Conceptions to Self-Help/Mutual Aid/Advocacy [Unpublished paper]
You can access the paper (which I have received permission to post) here:
The opening paragraph of the paper reads:
Conceptions to Self-Help/Mutual Aid/Advocacy
Michael Petrunik and Thomas R. Klassen
With the exception of sporadic and disconnected writings (Lemert, 1951, 1970; Petrunik, 1982, 1983, 1988, 2000; Klassen, 1995) stuttering has not been systematically or extensively examined from a sociological perspective. In this paper, we use a sociological (symbolic interactionist/social constructionist) perspective to analyze the development of the stuttering self-help/mutual aid/advocacy movement that persons who stutter have developed to deal with the problems they experience in everyday life. In particular, we study the differences in the perspectives on deviance and social problems of professional experts and those experiencing a condition (Scott, 1970; Gusfield 1996; Loseke, 1999; Fox, 2002). By comparing the conceptions of stuttering and persons who stutter and approaches to stuttering management in the two approaches, we aim not only to present fresh insights to professionals working with fluency disorders, but also, by looking at a phenomenon that has been largely ignored by sociologists, to make a contribution to the study of deviance and social problems.
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There’s a reference in the Petrunik and Klassen (2003) paper to the fact that at the Banff 1991 conference, a suggestion was made that self-help groups should be restricted to people who stutter.
I have checked the summary of what was discussed at three workshops at the conference; the summary is available at a blog post entitled:
In August 1991, the first-ever Canadian conference of people who stutter took place in Banff, Alberta
The following excerpt from the above-noted post clarifies what was discussed at the conference, regarding what the consensus was, at the conference, regarding views related to whether self-help groups should be restricted to people who stutter who’ve received speech therapy:
A discussion Friday, Aug. 23, 1991 seminar on the current status of Canadian groups
Michael Niven of Calgary led this session. Four panelists each spoke for five minutes on self-help activities in four Canadian cities. Then the conference broke into groups of eight people.
The procedure of breaking into groups of eight ensured that each person attending a seminar would spend lots of time talking, instead of just listening to others speaking. The conference was organized in such a way that speaking time, from one day to the next, would be shared more or less equally among all participants. This is not an easy feat to achieve, but with good planning in can be done.
To ensure maximum diversity in each group, groups were determined beforehand, during the organizing of the seminars. Each person coming into the room was given a coloured card. The colour for each person was pre-determined.
When the group discussions began, the black-coloured card holders all sat together, the orange-card holders all sat together, and so on.
Later a spokesperson from each group reported back to the conference as a whole. Michael Niven ensured reports were kept brief. At the end, when all spokespersons had reported, there was an open-mike discussion.
The panelists described groups in Edmonton, Victoria, two groups in Toronto, and a group in Ottawa.
After this the conference broke into the groups of about eight people. After about 25 minutes, a spokesperson from each group reported back to the seminar as a whole.
The first to report was from Ron of Belleville, who said that some people in his group felt self-help meetings should be structured, and fluency skills should be monitored. He mentioned that self-help clearinghouses are useful in informing people about groups.
Next, Arun from Barrie said his group had mentioned that videotapes are a useful way to inform the public about groups.
He also spoke of news stories (for example, about the Banff conference) as a form of free advertising. He said some groups are open to everyone who stutters, while some are open specifically to graduates of treatment programs.
Joan from Vancouver said her group had found that speaking to people while they’re still attending a clinic offers a good way to get new members to join a group. She also described a group which had gained publicity by appearing as a panel at a local Rogers cable program.
Patricia from Calgary said her discussion group felt that people who haven’t had therapy can benefit from optional practice sessions offered by self-help groups. She said that for graduates of treatment programs, groups offer emotional support as well as help with maintenance of fluency skills acquitted at a clinic. She added that monitoring of speech skills is essential but should not be mandatory.
Jim from Hinton said his discussion group had noted that local therapists can assist you in recruiting for new members. He said self-help groups can enhance members’ social skills and added that speaking time at meetings should be shared equally.
John from Calgary said that pamphlets and newspaper articles can help to promote a self-help group. As well, his discussion group felt groups should be for all people who stutter, whether they’ve had therapy or not. He said that when meetings are large, it’s a good idea to break into smaller groups.
Self-help groups and speech professionals
During the general discussion which followed the reports, Marg Salisbury, a speech therapist from London who was also a member of a self-help group, suggested that maybe a speech therapist should be available to groups on a consultation basis.
Another person said she was very concerned about the idea of having a speech professional come to a meeting to comment on how people are doing.
A speaker from Vancouver said that the operative word is “self help”: we have self-help groups, and such a group ls not an organization that is set up for clinical psychologists or speech pathologists.
A speaker from Calgary commented that although in some sense self-help members may indeed find themselves acting as “amateur speech pathologists,” she said there’s not much else you can do when there are not enough treatment services available.
A speaker from Victoria said the function of the Victoria group is not to be speech therapists. If anything, he said, “we model the skills that we possess, but that is it. And [we decided] that we definitely want separation from a recognized professional speech-language pathologist.”
A speaker from Regina suggested that a group should be restricted only to people who’ve had therapy, and that people who’ve not had therapy should attend only as observers.
Marg Salisbury of London clarified her earlier comment. She said she didn’t think a speech therapist should chair meetings or attend without a special invitation. “I just meant,” said Marg, “she should be available for a consultation, to make an appointment, a 15-minute appointment with individual members.”
Grant from Calgary said he found it disturbing, as a person who hasn’t had therapy, that some people who have had therapy “almost have an elitist attitude: Because you haven’t had it, you can’t be a member of our support team.”
Andrew from Toronto said that, “As people who are all stutterers, we’re breaking into the haves and have-nots, which is those that have had therapy, and those that have not had therapy.” He said a self-help group should be able to address both groups of people.
Overall, the consensus appeared to be that self-help groups should serve both people who’ve had therapy as well as those who have not.