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A support group for people who stutter |
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CONTENTS NOTES FROM THE WORLD CONGRESS PERTH 2004 - By Warren Brown b Feb 16 Beyond Speech Fluency - Prof. David Shapiro c Towards neurological Understanding of Stuttering -Dr.Gerald Maguire d A Profile of Stuttering... Jason Chew e Anita Blom - Vice Chair ELSA f Employment and stuttering - Andrew Harding g The Medium ain't the Message- Charles Maskell-Knight i Comfort Zone - Alan Badmington j Passing Twice - Warren Brown k The Role of Science - Prof. Mark Onslow l Neurosemantics - Dr. Bob Bodenhamer m Experiences as a doctor and stutterer - Dr. Ian Taylor n Personal Experiences -Shree Gautam o The Relentless Journey - Neil Coy p Lessons from the Masters - Susan Block q Techniques: The good, the bad, and the Ugly - Prof. Peggy Wahlhaus r 38 years of self-help Group Activities - Shinji Ito s The Promotion that never came - Peter Dhu t The Wrong Arm of the Law - Rick Gately u< The Legal Right not to be Discriminated Against- Alan MacDonald v Feb 18 Successful Management Programme for Adolescents and adults- Prof. Dorvan Breitenfeldt w The Sport of Speaking - Dave McGuire x Stuttering Innovations- Richard Younis y Experiences of a Late-Onset Stutterer - Dr. Malcolm Nearn z The Journey, Past Present and Future - Bruce Rowe aa Personal Experiences in Western Australia- Sandy O'Keefe bb Accessing the Telephone- Michelle Fountain cc Overall assessment of the Speaker's experience of Stuttering- Judith Eckhardt dd Bullying and Teasing of Children who Stutter - Marilyn Langevin ee Using Time-out to treat Advanced Stuttering - Diane Franklin ff Predictors of Outcome - Susan Block gg Neural Bases in Children Who Stutter - Prof. Ashley Craig hh Anxiety in Adults who Stutter -Prof. Ashley Craig ii A New Paradigm for Stuttering - John Harrison jj Effectiveness of Rational Emotive Behaviour - Masuhiko Kawasaki kk Teasing in Adolescents who Stutter - Susan Block ll Individual Differences in Word Retrieval... and Compensation- Charn Nang mm Relationship between Fluency, Stuttering and Code Switching in Bilingual Adults - Tanya Klugman nn A Multinational Investigation of Stuttering Intervention - Prof. David Shapiro oo Self-help Movement: The American Experience - Mel Hoffman pp Self-help Movement: Setting up the International Association - Thomas Krall qq Self-help Movement: Outreach - Stefan Hoffman rr Self-help Movement: Future Directions - Dr. Mark Irwin NOTES ON THE WORLD CONGRESS FOR PEOPLE WHO STUTTER, HELD AT FREMANTLE, WESTERN AUSTRALIA, FEBRUARY 15-20, 2004. (DISCLAIMER: The information outlined below is taken from notes handwritten during the World Congress for People Who Stutter, unless otherwise stated. The notes are presented in chronological order. All plenary sessions were attended but it was naturally impossible to attend all concurrent sessions, as there were usually five options to choose from. Every attempt has been made to record the sessions I attended faithfully and honestly. But some speakers spoke far faster than my hand could write and others flashed Powerpoint presentations onto the screen too quickly to reproduce in their entirety. Any omissions or inaccuracies are regretted. – Warren Brown.) FEBRUARY 14-15: a INTERNATIONAL STUTTERING ASSOCIATION MEETING Delegates agreed: "That the vision statement for the ISA be ‘A world that understands stuttering’." Stefan Hoffmann explained the criteria to become a special friend of the ISA. Benny Ravid was not on hand to give his website report. He had injured himself in Israel and was not well enough to fly to Australia. Stefan Hoffmann outlined progress with the ISA’s Outreach programme. In his presidential report, Mark Irwin said: "Slowly but surely the word is spreading and I believe the ISA can feel strongly that over the last three years it has taken significant steps towards fulfilling its dream of a world that understands stuttering. We must remember that half the world’s population live on less than $2 per day and even in the developed world access to professional therapy services is often limited. Given these problems with access to affordable treatment then the ISA’s work of providing information on stuttering and helping to promote national and local self-help groups, is as vital as ever. "Specific steps taken by the ISA over the last three years include:
"Stefan Hoffmann is to be thanked and congratulated for his outstanding commitment to outreach on behalf of the ISA. Stefan developed a plan for his activities and I believe he has worked through it with great success. He will present his outreach report later. "The upcoming world congress is sure to be memorable with numbers eclipsing the Ghent conference three years ago. I am sure this is due to wonderful promotional work by the congress convenor Peter Dhu. I have been delighted to serve as programme committee chair and know how hard Peter has worked in every aspect of the congress arrangements. "A CD-Rom with stuttering information suitable for distribution in schools was an initiative developed at the Ghent conference three years ago. I am pleased to say the CD is now complete and is available to member associations for distribution throughout their countries. I will give a full report later in this meeting but I would like to acknowledge the following people for their involvement: Judith Eckardt (USA), Claudia Groesman (Spain), Erik Lamens (Belgium), Marilyn Langevin (Canada), Michael Sugarman (USA) and Melissa Urquhart (Australia). "In addition the ISA has continued to produce its newsletter, One Voice. I thank Andrew Harding, of the British Stammering Association, who has edited and produced the last four issues and, before him, Warren Brown, of the New Zealand Speak Easy Association. Both men are journalists and have been extremely diligent and creative in their efforts. We at the ISA owe them a large debt of thanks for their willingness to give so much of their time for this effort. Also I would also like to thank Martine deVloed from Belgium who has served as One Voice co-ordinator. It is with regret we must accept Martine’s resignation from the board. Her efforts on behalf of the ISA also included serving as vice chair and convenor of the last ISA conference. "Our efforts at outreach and international communication in general have been helped significantly by the development of the internet. Benny Ravid, from Israel, has served our association wonderfully well as an extremely competent and committed web master. I thank him for his efforts. Benny has also served as a board member and deserves our thanks in this regard as well. "On an administrative level, there is also concern that many of our member associations are in arrears with payment of affiliation fees. Our treasurer, Hermann Christmann, will no doubt give specific detail in his treasurer’s report. However, in spite of this, we have been able to meet all our financial commitments as well as raise money for travel scholarships for people from disadvantaged countries to attend our congress. Again I thank Stefan Hoffmann for his fine work in co-ordinating this activity. "I also thank Stefan for his support as vice chair of the ISA for the last three years. He has always conducted himself professionally and I have very much appreciated his timely replies and reminders. He has been extremely effective in his role and made my job much easier. I am sure the entire ISA is sorry to hear of his decision to resign from the board but we are heartened to hear he will continue to lead our outreach efforts. We understand his retirement from the board is a temporary situation and we look forward to his involvement at board level in the future. "Mary Wood, from Canada, and Beatriz Touzet, from Argentina, are also retiring board members. Both have been extremely enthusiastic ISA supporters and their presence will be missed at our congresses where their laughter and energy were infectious. I thank them for their efforts as I do our other board members not already mentioned, namely Annie Bradberry and Judith Eckardt from the USA and Gert Reunes from Belgium. In addition to their general involvement in discussions and decision making, Annie has served as board secretary and with Stefan helped co-ordinate the new ISA logo while Judith has helped with the CD-Rom project. We thank Gert for accepting the difficult position of liaison officer to the World Health Organisation. Unfortunately it seems professional commitments as well as his forthcoming marriage have hindered Gert’s ability to accomplish as much as he would have liked. Gert and his new wife Petra were very hospitable to all ISA delegates during our Ghent conference. "Also I would like to acknowledge the fine work of ISA advisory board member Michael Sugarman, who has acted as co-ordinator of the ISA’s International Year of the Child Who Stutters. This event will gather momentum with the distribution of the ISA’s CD-Rom and the accent given during the international online conference in September. "Finally to the future: I feel extremely optimistic about our future for three reasons. Firstly, as discussed via the new technology provided by the internet we have been able to spread information about stuttering throughout the world. Our ability to do this in the future will only be enhanced as internet access spreads globally. Also our consumer voice is getting stronger consistent with a general empowering of consumer groups throughout the world. This will enable both the ISA and our member associations to be more effective in our public education and advocacy work. In addition, we have yet to tap the resources of Unicef, Unesco, WHO and the World Bank. "Secondly, our liaison with the speech pathology profession has never been better. The strength of the relationship was amply demonstrated at the recent IFA Congress in Montreal where speech pathologists and people who stutter interacted both in professional discussion and social events. Of particular relevance was the fact that the congress welcome, as well as three of the four keynote addresses, were given by people who stutter. "Thirdly, I am impressed by the competence and experience of the people who have already nominated to serve on our new board. Elections will be held later in the meeting but there is no doubt our future is in good hands. "In closing it is obvious to say our situation would be improved if we were able to attract sufficient finances to fund professional staff. At the moment all our endeavours are the result of voluntary labour. This limits our ability to get things done as quickly as we would like, as our board must balance their community service with their work, family and social lives. However, while we are not moving at a fast pace, perhaps we are moving at sufficient pace. Steps are being taken and our dream is slowly becoming a reality. And at the same time people who have served the ISA are able to experience the positive benefits that come in so many ways from community service. I know I have. I have drawn energy and inspiration from the successes of the leaders of our member associations. My involvement with the ISA, particularly over the last three years, has been both an honour and a privilege. Thank you." In his treasurer’s report, Hermann Christmann reported preliminary figures for the calendar year of 2003. Total income was 6412.68 euros and total expenses were 1744.14 euros, giving a net income of 4684.60 euros. Assets at December 31, 2003, stood at 12,036.32 euros. On liaison with WHO, Mark said Gert Reunes, of Belgium, had found he was too busy to do the work as planning for his marriage had got in the way. Mark was keen to see the work pushed ahead. He asked Thomas Krall if he would take on the job but Thomas said he would need a few weeks to think about whether to take on the job. Michael Sugarman was not on hand to give his report on the International Year for Children Who Stutter, as he was attending his daughter’s batmitzvah in San Francisco. Mark read out the report. Mark handed over the chair to Mel Hoffman for the election of officers to the board of the ISA. Mel said the board comprised five to nine people who belonged to member associations. Board members could serve up to three consecutive terms of three years. Eleven nominations were received. After a secret ballot, the following were elected: Mark Irwin (Australia), Judith Eckardt (United States), Annie Bradberry (United States), Benny Ravid (Israel), Michael Sugarman (United States), Joseph Lukong (Cameroon), Masuhiko Kawasaki (Japan), Warren Brown (New Zealand) and John Steggles (Australia). FEBRUARY 16: OFFICIAL WELCOME John Steggles, Australian Speak Easy Association presidentJohn Steggles gave an introduction to conference, themed: "An Holistic Approach to Stuttering." He said the convention had it all – techniques, methods we can use, genetic work and pharmaceutical methods. The convention was a chance to laugh, maybe to cry and also a chance to talk a lot, exchanging the experiences that we have had with this fascinating problem of stuttering. WELCOME FROM ORGANISERS Peter Dhu, chair of the 2004 World Congress for People Who StutterPeter Dhu said the conference had attracted a total of 340 participants. This comprised 290 fully registered delegates, plus 10 others who had registered in person the day before the congress began, as well as 40 speech-language therapy students. b BEYOND SPEECH FLUENCY: LESSONS LEARNED IN PURSUIT OF COMMUNICATION FREEDOM. Professor David Shapiro, Professor of Communication Disorders, Western Carolina University, North Carolina, United States "Comrades," Professor David Shapiro said in welcoming congress delegates to his presentation. People who stutter have deeply shared experiences. That makes them comrades and friends. By working together, as teachers and learners, there is nothing they cannot accomplish. Prof Shapiro said he felt blessed. He married his best friend 20 years ago and had two children. He gave credit to his wife for her work in bringing up the two children. For 26 years, he had been a speech pathology lecturer. He is a person who stutters. He said the challenges we face are our journeys. Being the best we can be is a journey. But some throw in the towel. Some people don’t plan to go to college. We should never say never. We should never even think of saying never. Prof Shapiro said every journey must have a destination. He explained this in terms of a story about a daughter. People who stutter have stories to tell. Some are sweet; some are not sweet. Telling the stories provides a network. It connects people with each other. Some stories are yearning to be told. He said stories told in clinical context are no difference. They show hope, trust, courage and faith. To share own stories with others is our destination. A journey is a road that a person has travelled. He said he stuttered for 20 years. Now he is relatively fluent. He had wanted to study speech pathology at New York State University. But to be accepted into the programme, he had to first complete a course in public speaking. He was urged to study psychology because no pre-requisite course was required in public speaking. A year later, the public-speaking requirement for speech pathology was no longer required. In his mind, he felt he had failed the course even though he had never enrolled. Later he decided he had to complete the course to put his mind at rest. He decided to call his son Aaron. The name "Aaron" means son. Aaron was also the spokesperson for Moses, who stuttered. But he feared that the name Aaron would be hard to say. He toyed with the idea of calling his son "Joseph Aaron" but decided against it. He said the best gifts are those we give. If we share our dreams, it lets people imagine the unimaginable. He had made a decision to help others in his life. Gifts or wishes are:
To finish, he said: "You’re in good company, good luck and good on you." How close are we to a cure for stuttering using medications, Dr Gerald Maguire asked. For appendicitis, the cure is to cut it out. For diabetes and a wide range of other conditions, treatment is used. Medication is just another tool. He said that at age three he began stuttering and became interested in stuttering treatment. At age five, he was asked to give a speech about his brother and sister. Stuttering can make a person into a walking thesaurus. He said: "I have five siblings – four boys and one girl." Stuttering occurs in every culture. Every language has a word for stuttering. Labelling doesn’t help people who stutter. People shouldn’t just stigmatise those who stutter. He produced a list of famous people who have stuttered. Among them was James Earl Jones, an eloquent speaker. That such people can succeed tells children that they can succeed also. For many people, a well-known stutterer is Porky Pig. He wears no pants and has no genitals. What does that tell people about those who stutter? Statistics showed that 1 per cent of the United States adult population stutter – a total of two million people – and 4 per cent of US children – a total of three million people – which meant a total of five million Americans stutter. Yet he said the membership of the National Stuttering Association in the US was 4500 and that showed the NSA was not reaching a significant percentage of Americans. He outlined a wide historical range of stuttering theories and treatments. He said stuttering shows many similarities with Tourette’s syndrome. Common factors included anxious speaking situations and a strong genetic component, with recent research focusing on Chromosome 18. There are two approaches to the medical treatment of stuttering:
Dr Maguire outlined research into a number of these drugs. They included haloperidol, risperidone and olanzapine. But some of them have such severe side effects that some people were unlikely to take them for very long. d A PROFILE OF STUTTERING AND PERCEPTIONS OF DISCRIMINATION IN THE WORKPLACE Jason Chew, a speech pathologist doing post-graduate study in audiology at the University of MelbourneDuring the honours year of his speech-pathology degree course at La Trobe University, in Melbourne, Jason Chew undertook a study into stuttering and its implication in the workplace. As part of his study, he did a literature review in which he found:
Effects of stuttering on employment:
The study found 81.56 per cent of the respondents were employed at the time of the study, either fulltime, casual or part-time. All occupational groups were represented. A higher percentage of respondents were in the managerial or professional fields. About a quarter (26 per cent) had jobs that involved continual speaking but 4 per cent had jobs with very little speaking. A total of 94 respondents said stuttering had affected their choice of occupation. Jason Chew said the main findings of the study were that 59 per cent of people who stutter perceived stuttering had affected their work and 32 per cent perceived they had been discriminated against in their workplace. He outlined a wide range of statistics from his study and spoke briefly on the limitations of his study. His report has yet to be published. e ELSA AND THE EUROPEAN YEAR FOR PEOPLE WITH DISABILITIES Anita Blom, vice-chair of the European League of Stuttering Associations (ELSA)Anita Blom said ELSA is an umbrella association comprising 25 member associations. In 1986 at Kyoto, Japan, at the World Congress for People Who Stutter, people felt the need to have an organisation in Europe where they could exchange experiences and knowledge. That led to the setting up of ELSA. In 2003, the European Year for People with Disabilities (EYPD) was held. During the year, the European Union sponsored action to raise awareness of disability. ELSA was one of only five European disability associations to receive a one-year grant for EYPD. ELSA’s activities during the year included:
Andrew Harding, of the British Stammering Association "If you can’t control your speech, it can be difficult to control your life." Andrew Harding, who works for the British Stammering Association, said people who stutter should make sure that that quote doesn’t become true. In Britain, discrimination is covered by the Disability Discrimination Act 1995. It is a platform to help people. But it is controversial, as some people who are covered under the Act do not regard themselves as disabled. People who approach the British Stammering Association for help on discrimination are told: "This is what the Act says. Take it or leave it." Stammering (also known as stuttering) is listed as a disability under the legislation. All large employers in Britain are required to "adjust" an interview or working environment so that a person with a disability is not placed at a disadvantage. Adjustments might include:
The context of the British Stammering Association’s work is a growing awareness of the Disability Discrimination Act, the Disability Rights Commission and employment tribunals. Two cases have been taken successfully to employment tribunals. In those two cases, stammering was recognised as being a disability and the complainants were awarded compensation. Advice for dealing with job interviews included:
He said further information on discrimination in employment is available from the British Stammering Association’s website. g THE MEDIUM AIN’T THE MESSAGE Charles Maskell-Knight, a trained historian and public servant, now working on public finance issues in Australia’s Commonwealth Department of HealthCharles Maskell-Knight said he had known chief congress organiser Peter Dhu for 30 years. They used to play cricket together at school in Perth. Both stuttered at school. In 2001, Peter saw Charles speak at a conference at the Esplanade Hotel in Fremantle and was so impressed with his speech that he invited him to speak at the World Congress for People Who Stutter. He was asked to speak on: "How I learnt to live with stuttering." His job in the commonwealth government mainly involves intense negotiations. He also does quite a bit of public speaking and deals with parliamentary inquiries. He said he still stutters but doesn’t get anxious about it. At school, he was quite keen on debating. But he didn’t have the fluency to be able to compete in debates. So he became a ghost writer for other debaters. Slowly he was drawn into taking part and in giving other speeches. When he left school, he was asked to give the valedictory speech. What it usually involved was thanking the parents and thanking the teaching staff. But at the time, Australian politician Ben Chifley was strongly opposed to national funding of private schools and was making lots of noise about the subject. Charles wrote a humorous speech in which he pointed out that state funding of private pre-schools was okay and state funding of private universities was okay, so why was it not okay to fund private schools in the middle. He said the speech went down very well. After school, he moved to Canberra to attend university. He said he made friends and did well academically but tutorials were awful because of the need to talk at them. Back in Perth during the university holidays, he did a course in smooth speech. After four years at university, he graduated and joined the public service in Canberra as a research officer. It was in the days before computers. Public servants had to write things in manuscript. It was then typed up. The public servants then had to proof read their work in pairs. He found he was not so fluent doing this work. As a public servant, he was asked to write a 15-minute speech on the budget process for another staff member to present. He found the speech easy to write because he knew the subject matter really well. Then the person who was supposed to give the speech got appendicitis and wasn’t well enough to turn up. So Charles was asked to give the speech – except he didn’t have the speech. So he had to make up the speech as he went along. But he knew what he was talking about and the subject matter was easy. He had no trouble giving the speech. In fact, he has had to give many versions of that speech over the years and he now finds it easy to do. After going to work at the Department of Health in Canberra, he was asked to give a speech at the Regent Hotel on who is given surgery and why. The subject was controversial. About 600 people were in the audience and they obviously hated what he had to tell them. He had to explain the criteria. He was panic stricken beforehand. But all went reasonably well. At lunch afterwards, those he spoke to seemed to appreciate that he had gone to the trouble of speaking to them. He said nothing else is ever going to be quite so bad. Four tips he gave for giving speeches were:
Anita Blom, vice-chair of the European League of Stuttering AssociationsAnita Blom said that in 1982 she wanted to stop talking and stop living. Ten years later, she found there were others feeling the same. One year later, she was on the national board for Sweden’s stuttering self-help association. The European League of Stuttering Associations (ELSA) is an umbrella association of 25 European stuttering self-help associations. The idea for ELSA came out of the First World Congress for People Who Stutter, in Japan in 1986. The first European meeting for people who stutter was held in Germany the following year. In 1988, Edwin Farr and Konrad Schaefers took the lead. The first European newsletter was put out that year. ELSA was founded in 1990 by 12 national stuttering associations, meeting in Darmstadt, Germany. The work of ELSA includes:
i STEP OUTSIDE: WHY EXPANDING COMFORT ZONES CAN IMPROVE OUR STUTTERING Alan Badmington, co-moderator of Stuttering Chat (the world internet group for persons who stutter)Alan Badmington said he wished to talk about comfort zones and the way that they have a considerable bearing on our speech. Comfort zones were an area of thinking or behaviour or experiences that we confine ourselves to because we don’t wish to step outside them. "Being comfortable" often means "being in a rut". Why do we remain in our comfort zone? Fear is the gatekeeper to our comfort zone. Those who don’t wish to step outside their comfort zone experience nervousness and apprehension. But failures are learning experiences – stepping stones to success. Comfort zones for those who stutter: Stuttering in early childhood leads to many negative beliefs. Because it becomes ingrained, it leads to social consequences which lead to strategies to protect the person who stutters from the shame that he or she might be feeling. Alan Badmington said when he was young he couldn’t say 13 letters of the alphabet. A self-image that is too narrow imprisons us. People need opportunities for change. He said he heard about the Edinburgh masker. It blocked out the sound of his own voice when he spoke. It was a mechanical crutch. But it gave him the confidence he needed to do things that many persons who stutter would have avoided. Three years ago, he learnt new speech tools through the McGuire Programme. But he had to dismantle the fears that he felt before he could be confident using them. He decided he wouldn’t substitute words. He decided he would accept every speaking situation offered to him, rather than shirk the opportunity. He said he has never avoided speaking situations since that day. He said we need the courage to take risks, to transform attitudes and self-image. He decided to speak to businesses, using toll-free numbers. After giving many calls to businesses, he found that his fear levels subsided. He found he could speak authoritatively and was able to have lengthy conversations with those on the other end of the line. He set about taking on the situations he had avoided in the past. He talked to strangers. He was amazed at the courtesy he received from many of them. He said he has got over the negative perception that he would be embarrassed or that people would ridicule him. He no longer carries a piece of paper with his name written on it. Now he speaks in front of groups and faces his fears head on. He is involved in a Toastmasters-like group and has been successful against fluent speakers. He is happy to talk to community organisations and believes that members of the stuttering community should involve themselves more in such activities. Speaking on television and radio has helped his self-acceptance. One of the things he has tried is speaking on romance chatrooms on the internet – with his wife’s permission. But his sole purpose is to practise his speech. He has only received positive reactions. One thing he does is to set daily goals. The list is often extensive. Alan Badmington believes that personal development occurs when we go outside our comfort zone. It confirms that we are taking risks. He said a turtle can only go forward if it sticks its neck out. If we conquer something, we grow in stature, he said. With new experiences, we grow. A less familiar path has enriched his experience. Alan Badmington ended his presentation with a poem about comfort zones. Led by Warren Brown, of the New Zealand Speak Easy Association The Passing Twice workshop was for gay males, lesbian and trans-gendered people, to discuss how gay experiences can help people deal with their stuttering. The abstract for the workshop says: "Growing up gay has its own set of challenges. To confront those challenges, the gay strategy is to come out. Being a person who stutters also has its own set of challenges. The Passing Twice strategy is to come out as a person who stutters." Participants in the workshop introduced themselves and talked about their lives. Then the discussion focused on issues facing those who are gay and those who stutter. FEBRUARY 17: k THE ROLE OF SCIENCE IN SERVICES FOR THOSE WHO STUTTER Professor Mark Onslow said he was old enough to remember Tapestry, by American singer/songwriter Carole King. "A tapestry is something considered to be rich, varied or intricately interwoven," he said. For clinicians, therapy is based on where many of them live. For clients, sometimes they look elsewhere. He spoke about the political power of people who stutter and mentioned the roles of the International Stuttering Association and the Australian Speak Easy Association in this. On the screen, he showed the same woman four times, the first time using the "freespeak" technique and in the other three pictures using a type of speech device: the "throat microphone", the "ear bud" and the "headset". He commented that if you looked at the face of the woman in the four pictures, she didn’t look very happy. He said he had been to a conference recently where he had to sit through a speech on "the mucus membranes of the vocal chords". With Clive James wit, he alleged he had conducted an e-mail survey of delegates. When asked whether there would be any scientists at the congress, 92 per cent had said no. When asked "Do you know what a scientist is?" 63 per cent had said: "They wear white coats." When asked: "Do you know what a scientist looks like?" 23 per cent had said: "They wear funny glasses." When asked: "What is it that the scientists do?" 98 per cent had said: "Very little." When asked about scientists’ communication skills, 87 per cent had said it was difficult to understand what they were talking about. Prof Onslow told a story. He spoke about a condition that has affected humankind from the ancients to the present day. The condition was poorly understood. For many years, people thought it could be explained in terms of Sigmund Freud’s great theory – as a symptom of unresolved conflict. It was always there. The chances were that it would reappear. He said he was talking about bi-polar disorder. In ancient times, Galen, the Greek physician and scholar, decided to treat bi-polar disorder by putting patients in spring baths. How did he know to do this? It turned out lithium salts were abundant in the water of the springs. In 1948 in Australia, T F J Kay looked at the urine of people with bi-polar disorder. As a result, he injected guinea pigs with lithium carbonate. Now patients are injected with it. It showed that Freud’s theory was wrong – that bi-polar disorder is not a symptom of unresolved conflict but is in fact a neurological condition. Lithium seems to work if patients take their medication religiously. But a woman called Kay Redfield Jamieson decided she didn’t want to take this medication because of the effect it had on her. In fact, relapses are common with bi-polar disorder. Prof Onslow said the story was of clinical science and strangely familiar. He spoke of Demosthenes, an orator in ancient Greece, and Satiris, a Greek actor. Satiris told Demosthenes to go to an ocean and speak. This was history’s first example of the use of masking noise in stuttering therapy. For Satiris, it may just have been a party trick. When Israel Golddiamond tried electric shock treatment on people who stutter, it was a bit harsh. Later he tried using a loud noise. Then he tried playing back someone’s voice to them. When he tried a half second delay in playing back the voice, he found that people who stutter stopped their stuttering. In 1965, he began a preliminary clinical trial of the technique. This suggested that those who stuttered could be treated. In the 1970s, he tried four distinct variations of the treatment. The treatment rapidly became accepted. But it is far from perfect and it is not the only solution for treating stuttering. So far there still hasn’t been a randomised trial of Golddiamond’s work. Prof Onslow said there were some signs of hope. In Sydney, Roger Ingham had devised a computer-driven therapy for treating stuttering. The phase 1 trial has been completed. The phase 2 trial is under way. But as for the phase 3 trial, maybe . . . Although headsets have been used to treat stuttering, there has never been a study of them. Prof Onslow concluded that scientists don’t do much at all and that it took a long time for treatments to be introduced. Nothing happens really quickly. First a scientist needs a good idea, then good luck. They also need the shoulders of others to stand on, such as Galen or Satiris. With bi-polar disorder and stuttering, laborious roads have been travelled to treat them. But much has happened. It shows the slowness of science. For example, Ingham began his research in 1983 but his therapy is still not ready for people who stutter to try. The idea of speaking during a noise has been around for centuries but a therapy derived from it is not yet perfect. Maybe someone will come across a great idea. It is only a matter of time. Scientists can wait and bide their time. But for many scientists, it may never happen. Satiris had told Demosthenes to declaim while walking uphill. This uses what is now known as the rhythm effect. William Webster had found stuttering seemed to be related to manual and finger co-ordination. Then Ludo Max and colleagues found anomalies in finger movements among those who stutter. These were two independent reports, saying much the same thing. If correct, it could be another thread in the rich tapestry of stuttering, Prof Onslow said. Indeed, it has been found that the part of the brain dealing with speech is very close to the part of the brain linked to finger movements. Is this link true? It could all be wrong. The findings may fail the critical test in children if it happens after the onset of stuttering. Prof Onslow thanked the ISA, the ASEA, Galen, Satiris and many others for contributing to the rich tapestry of stuttering research. l AN INTRODUCTION TO MASTERING BLOCKING AND STUTTERING WITH NLP AND NEURO-SEMANTICS: Dr Bob Bodenhamer, master practitioner in neuro-linguistic programming (These notes also contain information from his presentation handout, reproduced here in direct quotes.) Dr Bob Bodenhamer said he had stumbled onto the model for treating people who stutter. He saw stuttering as an anxiety and panic disorder. About 1997 or 1998, a man had asked him to help his son who stuttered. Dr Michael Hall, who knew about cognitive sciences and behaviour, helped him. Metastate is the model he uses. He used it to treat the son and it resulted in an immediate fix. He found that the son only stuttered when he was around authority figures. He discovered that the son had problems in his relationship with his father. Later Dr Bodenhamer came across the work of John Harrison, of the National Stuttering Association. This launched him into the work of treating stuttering. "What we are doing is offering hope," Dr Bodenhamer said. Neuro-semantics has proved quite effective for many people who stutter, he said. Not all have obtained fluency. It is a model for treatment, not a quick cure. There was a lot of hope with the treatment. But most who gain fluency must work to achieve it. He said the model is in development. He raised some questions for the audience’s consideration:
Dr Bodenhamer said blocking begins in childhood. It begins when some "disfluency" gets named or labelled as something bad and unwanted. Early learnings in childhood and later reinforcement lock in the disfluency, which then becomes an adult blocking. "It is the meaning that we give an event that determines our response," Dr Bodenhamer said. "How is blocking and stuttering structured in the mind? It is structured like any other thought-feeling-behaviour. It all begins with the meanings that we give events. "The word ‘meaning’ comes from a German word ‘to hold in mind’. What meanings do people who block and stutter typically hold in mind? We shall be considering those. "We believe that meaning determines our state of mind and our state of mind determines our behaviour, be it blocking or be it fluency. Meaning lurks behind all states-behaviours for meaning creates all states-behaviour. Meaning determines how we define all the categories of our lives. "We have found that, in addition to meaning, we have six other key areas for categories of how we define our lives: Self, Power/Resourcefulness, Time, Others/Relationships, World and Purpose/Intentions. I have found these areas most helpful in understanding the structure of blocking-stuttering." He said the key categories of meaning are:
"I don’t want to look like a fool." (Intentions.) "I am flawed." (Belief.) "I am out of control." (Power.) "I have always blocked and always will." (Time.) "I can’t measure up to the expectations of other people." (Others.) "I won’t succeed." (World.) These become meanings because we hold them in our minds, he said. Seven mental categories "we should never leave home without" are:
"You have one set of meaning categories for when you are fluent and another set of meaning categories for when you block. And, because these meanings are outside your conscious control in most cases, they are very well learned and are unconsciously driven. Special help is often needed to provide new meanings to those old unhealthy meanings that drive your blocking." On the screen, Dr Bodenhamer showed what he called the "Meaning Category Circle". In the middle, in a circle, was meaning. Surrounding it, in a wider circle, were Self, Power, Time, Others, World and Purpose. It shows how the centre of your life determines all the other categories of meanings of your life. "I shall illustrate," he said. "When a person who blocks and stutters anticipates an upcoming conversation, the person may fear that they will block based on past experiences (Time category). But the person does not want to repeat the past behaviour of blocking (Intention category) due to all the negative meanings the person has associated with blocking and stuttering (Meaning category). These meanings find expression in the other categories such as "I don’t want to appear like I am a weirdo because I block" (Self category) or "I am powerless to overcome this" (Power category) . . . "Note how the person’s defining of self is mostly determined by the meanings associated with blocking and stuttering. And the intent or desire of not repeating past behaviours, due to the meanings associated with blocking/stuttering, drives the meanings given to the other areas of our lives: ‘I don’t want to appear like I am a weirdo because I block’ (Self category) or ‘I am powerless to overcome this’ (Power category). Dr Bodenhamer said we create meanings first with the movies of our mind. "The brain utilises our fives senses in the creation of a movie consisting of pictures, sounds, feelings, smells and tastes that represent our experience of our outside world. In recalling a painful experience of being made fun of as a child for blocking, most people, but not all, will have a visual image of that memory. This is part of the movie of the mind. There may be sounds as you hear the voices of the other kids and maybe even the teacher making fun of you. You may recall an experience of your dad saying to you: ‘Spit it out; spit it out. What is the matter? Can’t you talk?" Those pictures, sounds and feelings are the key components of the movies of your mind . . . "Secondly, we create meaning by giving meaning or definition to the movie of our minds with words. It is with language that we give meaning to all of our experiences. Without language, the movies of our mind would have little if any meaning to us. We must define them with words before we understand the meanings of the movies of our mind. So, we create meaning first with the movies of our mind and secondly with language. "With these two primary neurological abilities, all meaning is created. I shall further explain how one utilises the movies and the languages of one’s mind in creating blocking and stuttering:
He believed blocking is a panic attack. Dr Bodenhamer believes the movies of the mind lock in the disfluency of childhood. "Once locked in, one unconsciously moves through one’s life blocking and stuttering. The layering of these thoughts, on top of one another, creates the block. The layering multiplies the effect of all the thoughts. For instance, if you think ‘I have always blocked and I always will’ and from there, you think ‘I am a hopeless case’ and ‘Indeed, I am hopeless – I am not normal’, this layering of negative thoughts on top of negative thoughts puts you into a totally powerless state. "It is the feelings and emotions emanating out of all these thoughts firing at one time which are embodied in the muscles surrounding breathing and speech that produce the blocking. As with all panic attacks – blocking functions exactly as a panic attack – the emotions expressed in those particular muscles for breathing and speaking result in a physiological response called blocking. Stuttering is a result of the person trying to break through the block." He showed an illustration of the phenomena of layering our minds. The mental frames of mind presented in the illustration came from one of his recent clients. The client began thinking: "I would give mother presents and she would ignore them." This led to the thought: "I felt totally devalued." Layered on top of this was the thought: "I felt worthless." She then decided: "If I had value, I would be accepted." In another layer, she concluded: "I am not acceptable." She then said: "I wish I were dead." Her next layer of meaning was: "I wish I had never been born." Then she concluded: "I wish I wouldn’t wake up in the morning." Dr Bodenhamer said: "With such meanings embedded in her chest, throat and jaws, are you surprised that she blocked? And are you surprised that she had problems with depression as well? Again, it is the layering upon layering of deeply unconscious negative meanings that find expression in those specific muscle groups for breathing and speaking that create the blocking and stuttering. "One gains fluency by removing or changing these meanings to newer and more positive meanings. This will result in creating newer and more powerful categories for living and speaking. What meanings have you created in each category surrounding your blocking and stuttering? What would happen to your speech if all those meanings suddenly disappeared?" To change these meanings, clients have to layer positive thoughts on top of negative thoughts, Dr Bodenhamer said. "Basically, one changes the unwanted memories by creating new meanings in exactly the same way one created the negative memories. "I shall explain. The blocking and stuttering became locked in by the child’s layering on negative meaning on top of negative meaning about what he or she didn’t like about the disfluency. As we mentioned earlier, this layering meaning on top of meaning acts to hold in the unwanted behaviour. The layering actually multiplies the effect and creates the blocking from a simple disfluency. "So in changing those negative thoughts to positive thoughts, we want to layer on positive meanings on top of the negative meanings. "For instance, say you experience fear of what others may think should you block and stutter. Instead of going the negative route, you instead go the positive route. You think: ‘I am a courageous person. I have lived my life blocking and stuttering. I have survived. That takes courage.’ Now, take that thought and state of courage and apply it to the thought of fearing what others may think of your speech. Layer ‘fear’ with ‘courage’. "This is how we build up anticipatory anxiety," Dr Bodenhamer said. m A PATHOLOGICAL STUTTERER: EXPERIENCES AS A DOCTOR AND A STUTTERER Dr Ian Taylor, a medical pathologist, of Tauranga, New Zealand (This is the full transcript of his speech.) My name is Ian Taylor, I live in Tauranga New Zealand and I am going to talk to you this morning about my experiences both as lifelong stutterer and as a medical practitioner practising as a specialist pathologist. I will talk about my career as a pathologist, my experiences as a stutterer and the impact of Speak Easy on my fluency. At this stage I would like to thank the 2004 World Congress for People who Stutter to allow me to make this short presentation. I am indebted to the Australian Speak Easy Association for hosting this meeting. I live in Tauranga, which is situated in the North Island of New Zealand, on the east coast in a region called the Bay of Plenty. It is three hours’ drive south of Auckland, the largest city in New Zealand. We recognise three major islands in New Zealand – the North Island, the South Island and to the west, illustrated by this little kangaroo, is the West Island. Others know it as Australia. Tauranga has a population of approximately 120,000 people and it lies adjacent to the Pacific Ocean with vast miles of beautiful white sandy surf beaches. I live in the suburb of Mount Maunganui. The region attracts large numbers of visitors, especially during our summer. The major area of activity in Tauranga is retirement, a big international port and horticulture, especially kiwifruit. As mentioned, I practice as a pathologist. Now, the word pathology refers to the study of diseases. A pathologist is a doctor who specialises in the study of diagnosis of disease. It usually refers to diseases of the human body but there are other branches of pathology such as veterinary pathology or plant pathology – and specialists in speech therapy in some countries call themselves speech pathologists. After leaving high school, despite a pronounced stutter, I decided to train to become a doctor. Six years later, I graduated with an MB ChB from the University of Otago. After two years’ internship in New Zealand, I was directed by my employers to a remote area of New Zealand called the Chatham Islands. This is an island about 600 miles to the east of the South Island of New Zealand with a population of approximately 700. It was very isolated and we were lucky if we received one plane a week from New Zealand with a ship every two months delivering our supplies from New Zealand. My role was principally one of a general practitioner but at times, being the only doctor, I was called to be surgeon, anaesthetist, obstetrician, radiologist, pathologist, psychiatrist, counsellor, dentist, veterinary surgeon and, on occasions, funeral director. There was not much scope to practise speech pathology because I think I was the only stutterer on the island. This is the picture of the principal settlement of the Chatham Islands called Waitangi – just a little cluster of houses with a store, hospital, church and wharf. Some of the settlements were very isolated and you often had to practise medicine in unusual circumstances. This image shows me operating on a woman’s foot. I think she had a foreign body in her foot. The economy of the Chatham Islands is based on fishing, especially crayfish – or lobster as you call it in the Northern Hemisphere – and farming. It was a very interesting experience and reluctantly I returned to New Zealand for specialty medical training. Also my new wife was due to have our first baby. Initially I started in the Obstetric Training Scheme but decided that was not for me when I realised for the rest of my working life that I could be up at all hours of the day and night to deliver babies. As a failed obstetrician, I decided to train in pathology. Most people think pathologists perform only autopsies. This comes from reading Patricia Cornwell novels or watching TV programmes like Quincy, which deal exclusively with forensic pathology – the study of unnatural or uncertain death. Our image is not helped by the press. This cartoon from the New Zealand Herald concerns the special bonus of $50,000 that was paid to pathologists to alleviate an acute shortage. It was such a huge bonus that it even caused the dead to rise and exclaim: "How much?" Pathology is a huge specialty with many subspecialties. In the provincial centre of Tauranga, we have over 250 staff, operating a 24-hour service providing laboratory testing for both hospital and community patients. Some of the branches include anatomic pathology and cytopathology, where we examine tissues or cervical smears under the microscope to make a diagnosis; clinical chemistry; microbiology; haematology, the study of blood diseases like leukaemia; blood transfusions; cytogenetics; molecular medicine and of course forensic pathology. Doctors who stutter are uncommon but not rare. I would not be surprised if there were about one in 400 doctors. I know of a gastro-enterologist, general practitioner, oncologist, obstetrician and an orthopaedic surgeon, all of whom stutter. One thing about the practice of medicine is that there is nowhere to hide if you are a stutterer. At one stage you might have been able to hide in the laboratory or in the radiology suite back room. But since I started practicing medicine, communication has become vital. You have to talk to patients, relatives, staff, meetings with colleagues, educational programmes, management, using the telephone, court appearances, present interesting cases to physicians and talk to the media, including television. I think it is very difficult but good for stutterers to work in occupations where communication is important. Now, I want to return to my life now as a young stutterer. I am the fifth of seven sons. My father was a stutterer. My second eldest brother had a stutter and interestingly my son was assessed at primary school for being a stutterer. My father became increasingly fluent with his speech as he grew older. He worked hard on his speech without the aid of speech therapists and would spend many hours reading out aloud, using what I would describe as a forerunner of smooth speech. Dad admired King George VI, of Great Britain, who suddenly came to the throne with the abdication of King Edward VIII when he married the divorcee Wallace Simpson. King George VI was a severe stutterer and courageously became King of Great Britain and, in spite of his stutter, became reasonably fluent. I became aware that I had a stuttering problem when I was around seven years old. It became increasingly severe and in fact I still stutter. I attended a short period of speech therapy for about a year as a 10-year-old child but I still continued to stutter and by the time I reached high school my stutter had deteriorated. I was avoiding the telephone and interaction in class and social situations. My first day at high school was a nightmare. I was unable to tell the teacher my name and had to write it on the blackboard in front of the class. This was quite an embarrassing and humiliating experience. I did received exposure to speech therapy at high school and I learnt of two American speech pathologists, Charles Van Riper and Wendall Johnson. I understand they were both stutterers. Their techniques included self-acceptance of your stutter and to modify your stutter to an easier no-block form. This gave me great encouragement. My speech improved. I knew I could train to become a doctor and it didn’t matter if I stuttered. I have had very little speech therapy as an adult and I have to be the first to admit that this is largely self-inflicted. Unfortunately, like many people including stutterers, I have suffered badly from the too busy syndrome and I have been too involved with my career and other activities to seek help as an adult stutterer. I am sure this attitude applies to many adults who find excuses for not obtaining help. In later years, however, I have become a little more realistic and sensible. In 1998, I came into contact with a speech therapist who taught me the initial technique of slow smooth speech but, like many good intentions, a major expansion occurred in the laboratory. I felt under business pressure and rather unwisely withdrew from therapy. In 2000, I read an advertisement in the local community paper about a local Speak Easy group for adult stutterers, co-ordinated by Warren Brown who is a stutterer and quite prominent in the Speak Easy circles in New Zealand. He invited me to a Speak Easy meeting, which I have been attending ever since. We meet as a group on a fortnightly basis for 1½ hours and this provides great support and helps us as individuals. It is a great relief and support to realise that other stutterers exist and you are not alone. A typical meeting lasts 1½ hours and has plenty of variety involving relaxation techniques, impromptu speaking, role plays, live telephone calls and other things. We have a loose but increasing association with the Speech Therapy Department at Tauranga Hospital. Currently we only have three members at our Speak Easy group. The most we have ever had is five. It is quite a challenge to recruit adult stutterers. We have had several inquiries from women stutterers but none have joined our group. In my experience, Speak Easy groups do have some challenges. One is recruitment. We find that we don’t meet stutterers often in our day-to-day lives and we are dependent on a good liaison with our Speech Therapy Department. Being in a provincial center, the speech therapists are generalists and no-one has a fulltime interest in stuttering. This may be an impediment to recruitment. However, we are fortunate in that one of our new therapists at the hospital has been given the national responsibility of co-ordinating with Speak Easy groups in New Zealand and this hopefully will result in more recruits. Once a year we promote our Speak Easy group in an article in the community newspaper to publicise our existence to the community. We have learnt to be careful with advertisements. We used to advertise our telephone number for stutterers to ring and we found our responses had not been great. We realise now that we need to include a postal and e-mail address for those stutterers who are not capable of using a telephone. Another issue is maintaining a vital fresh programme. Even though our numbers are small, we do have a varied and challenging programme. I feel I have made great progress in recent years. I certainly have benefited from the opportunity of attending Speak Easy and from trying to incorporate slow smooth speech into my normal conversation. I still have many times when I relapse – especially when I am tired or under stress. For reasons that continue to perplex me, I find maintenance of continual slow smooth speech in my ordinary speech very difficult. Before concluding, I would like to talk on a lighter note – about my wedding. This is a photograph of my wedding day, the greatest day of my life. Although you may think I look happy and relaxed, in fact I was becoming increasingly desperate. In two hours I had to speak to all our guests on behalf of my new wife and propose a toast to the bridesmaids. This worried me for weeks and was, in my opinion, a good reason to elope. However, a friend of mine gave me some very good advice: advice that I have found very helpful over the years and pass on to you stutterers this morning. He said: "Ian, when you start your speech, say something like this – ‘Ladies and gentleman, being a stutterer and speaking on behalf of my wife at my wedding is very difficult. It can be likened to having a baby – easy to conceive, but difficult to deliver.’ " Well, it brought the house down and relaxed me and the audience immediately and I have used that kind of approach many times when I am public speaking and testify that acknowledging very early on that you stutter breaks down a lot of the fear associated with speaking. I wish to express my appreciation to all the people who have helped me over the years – speech therapists and our Speak Easy group and my wife, who has been a wonderful encourager to me over the years. In conclusion, I thank you for listening to my talk and again express my appreciation to the organisers of this congress for giving me this opportunity to talk to you. n PERSONAL EXPERIENCES AS A PERSON WHO STUTTERS Shree Gautam said he had decided to speak from his heart during his presentation. "For the first time I will speak about my life as a stutterer in front of a group of people." In Nepal, he gives lectures at a university. He has been doing it very successfully. But he still feels like a stutterer. He did not remember exactly when he started stuttering. He can remember an incident when an aunt teased him. He was describing a sweet that was made of water. "I thought I was speaking fluently. I did not realise I was stuttering." He was shocked that his aunt should speak in this way. It was his first experience of this. He said he couldn’t remember any incidents before that time. The same aunt continued to tease him until he was seven or eight. "One of the friends of my mother suggested that my mother should give me a slap – my block was not good – and to give a punishment. I felt more and more guilty and was made to feel that was not okay." He said he used to go to the temple with his mother, to pray to God to give him fluency. "At the beginning I felt bad that I had to ask God to make me acceptable to my mother, my father and society. At the time I accepted it." The temple was one hour away. Later he could go there by himself. He visited the temple many times, asking God for help. Now he believes that praying to God can be a good approach to help the emotions. The village he grew up in did not have a village school. The primary school was 15 minutes’ walk from home. On the first day of school, he was asked his name. He said: "Sheeeere." Some of his classmates laughed. He ran away to his house. After that experience, he didn’t go to school for the next few years. Instead, he visited the fields then returned home in the afternoon every day. At home, his father used to teach him simple mathematics and other subjects. At the age of eight, his parents decided to send him to another school. "I would go with my elder brother so I could not get out of going to school. The very stressful days started in my life." It was a grade 1 to 10 school and he was in grade 3. The hardest problem was saying his name because there was a lot of pressure. Later the teachers skipped his name. In grade 5, he was better at maths and the Nepali language than others. The teachers were impressed with his study. They stopped laughing at him and his stutter. "Until that time, I thought I was not an important person. I thought I was flawed." He realised that if he worked hard they would like him. By grade 7, he was one of the brightest students in the class. In grades 8 to 10, he started to feel good about himself. The stuttering was not present. He still used to block. But at that time he started to feel important and it started to influence his friends. At that time there was no speech-language therapy in Nepal and no department of psychiatry. As he didn’t accept his stuttering, he tried any wild ideas that came to mind. Demosthenes, in spite of stuttering, became a very important speaker. So Shree did so many things. He tried to speak with stones in his mouth. In the rice fields or in the middle of the river, he practised speaking. He thought that had helped a lot. At the time he didn’t stutter at home. But that was not enough for him. He decided to try yoga exercises to improve his fluency. Yoga relaxes the mind and body. He put aside time to practise it and also learnt meditation. It put him at ease. His fluency was not falling back at the time. During his university days, there was an active student revolution. He had some opinions but didn’t dare to become a student leader. He would prepare written speeches then give them to those who spoke for him. He completed his Bachelor of Science in Nepal then was given the chance to study medicine in Pakistan. In the meantime, while waiting for confirmation of his scholarship, he was offered a job as a teacher of science and mathematics. Inside, he was a stutterer who feared such speaking situations. But as soon as he became a teacher he was a totally fluent person. "If I feel like a leader, if I feel that I have the control over the situation, then I can become fluent," he said. He felt powerful and confident. It put him at ease to speak fluently. When he went to Pakistan to study, he became the representative of all the foreign students. He spent half an hour to an hour a day doing yoga and meditation. After returning from Pakistan to Nepal, he became a lecturer. "As a lecturer I do not stutter. Although I feel the blocks, for most of the time they do not stop me." He gave four pieces of advice:
(This is the full transcript of his speech.) Good morning ladies and gentlemen, how apprehensively responsible of me to be standing before you with hopes of delivering you this lengthy expose in fluent smooth speech. If you can hear these knees knocking, you will more fully comprehend I am but one of many of our ilk attending this gathering. Life began for yours truly in Hobart, Tasmania, almost more years ago than one cares to remember. As a small boy, rumour has it I was very talkative. With all those incessant questions, adult minders were always telling me to shut up because I talked too much and asked too many questions they didn’t have answers to. At an early age I had severe whooping cough that may have affected my breathing and, at age five, was stricken with double pneumonia. Only four years ago I had a lung X-ray that revealed a third of my lungs were severely scarred. This may have resulted from then, or from the asbestosis that is now evident in my lungs from years of boilermaking. These breathing difficulties may have triggered the stutter that is inherent in some males of my paternal family over the several generations I have since researched, through my penchant for history. Although I had an anxious way of talking as a small boy, those from the prior generation claim I didn’t develop a severe stutter till around the end of World War II. About that time, a heavy wardrobe fell on top of me. The nuns at St Joseph’s Convent changed my writing hand from left to right. My mum always looked at these incidents as the commencement of my stuttering. Later, a school playmate was raped and murdered. The murder event affected me most severely at the time and held repercussions well into my when I’d awaken from a recurring nightmare in a cold sweat with feelings of asphyxiation Shortly after my father returned from World War II we moved to Burnie on the nor-west coast of Tasmania because he had found work at the local pulp and paper mills where he was employed for the next 33 years. By that time my stutter was well and truly entrenched and became the cross I was to bear for the rest of my journey. Life through school wasn’t too bad considering. I was fortunate to be accepted well by many of my peers and any prospective bullies were probably discouraged by my father’s awesome reputation as a boxer and former police constable: "He’s Paddy Coy’s son so you had better lay off him." At secondary school I gained a bursary, was in the top echelon of students for the first three years and began making a name for myself within the school as a tennis player. But in fourth year there were three stutterers in the class and the damn class teacher seated us together in a far corner of the room where we were virtually ignored. My academic results in that crucial year deteriorated and I was lucky to gain the standard achievement certificate. Although advised to carry on to an economics-based tertiary career (because of outstanding speeds at mental maths) I did not have the necessary self-esteem nor did my dad earn enough to put me through university. Thus, at 16, I settled into a boilermaker/welding apprenticeship at the same paper mill my dad worked at. Though accepted well by the men as Paddy’s son, I somehow felt like a square peg in a round hole as a blue-collar worker. Nonetheless, I eventually became a competent tradesman who worked more than 30 years in that occupation. The saving grace in those late teens however was sport, as I excelled in lawn tennis, table tennis and trout fishing. At tennis I developed into a State A grader and at table tennis eventually became State Singles Champion. Trout fishing with a few of my mates became a way of life over numerous weekends of total immersion in nature. In later life I wrote and published a popular book on freshwater fishing in Western Australia. In the late 1950s there were no formal speech therapists. Well-meaning attempts at curing my malady had begun with my father telling me about a criminal lawyer in Hobart who talked in a very slow and measured manner to control his stutter. A former stutterer, a graduate from the Victorian Arts Academy who had studied singing, took me under his wing for a few months. Then, at 19, I used to bus through to Launceston once a month for sessions with a hypnotherapist, Dr English, who concluded I did not want to speak and that he hoped my sessions with him had allowed me some appreciation of why. I eventually decided I hadn’t wanted to talk because the simple act of speaking was so damn tense and exhausting. Another shot in the dark was being whisked off to a Dutch faith healer who looked intently into my eyes and dashed my relatives’ hope of any miracle cure, stating that any cure would take a long, long time and even then be doubtful – he was right of course! At that stage in my life there were fluctuations and vacillations in my speech patterns. My whole body would virtually tense from my head right down to my toes. Such was my being that I talked very little and was mostly a passive social observer. Thankfully, my mind was sharp and in social situations I often blurted out the words others were struggling to find. Because spontaneous cliches were easy to express fluently, I adopted a whole repertoire of expressions that covered a host of situations. These two ploys seemed to indicate to my friends and others that I was at least up with their conversations and, at times, well ahead of their thinking. In my late teens, I gathered quite a reputation for keeping the fairer gender out till the wee small hours. Contrary to what the audience may be assuming, the main reason was that my speech maintained fluency on such occasions. Thus, those numerous late nights became my platform to perform as a thinker who relished opportunities to debate and philosophise on a whole kaleidoscope of topics I rarely had a chance to voice elsewhere. Upon completing my apprenticeship I moved to mainland Australia to live in Melbourne for three years – the main purpose being to see how far I could progress in table tennis. The previous year I had represented Tassie in the national championships in Perth and had been fortunate to reach the semi-finals of the men’s doubles – further than any Tasmanian had advanced to that stage. In Melbourne I soon became a recognised player and even began the now long tradition of Victorians flying to Hobart to compete in the Tasmanian Open, which I was fortunate enough to win in 1961. Four weeks after that crowning achievement, I did a turnaround that amazed my friends when I gave away the sport to concentrate, for the next 12 months, on correcting my speech. Because there was no formal speech therapy back then I began with a tape recorder and practised 2-4 hours every day. Early in that year, I happened across a chiropractor who had been a stutterer. He manipulated vertebrae in my neck free of charge and a few months later he directed me to South African hypnotherapist, Lee Saxon, who also claimed to have been a stutterer. Mr Saxon worked with me for the next four months via tape recordings played before sleep and upon awakening, and through weekly consultations, many of which were gratis. Through his mode of autosuggestion and positive affirmations, I began to make progress but that Christmas was called back to Tasmania where I lived for the next seven months. My poor mother thought I would surely go round the twist via those hypnotic autosuggestion tapes that I diligently played before retiring and first thing each morning. In July 1963 I returned to Melbourne and immediately recontacted Mr Saxon. From there began the most amazingly fluent six weeks to that stage of my life. This was real manna from heaven but Saxon knew it wouldn’t last and was disappointed for me when I moved to Western Australia in late September 1963, shortly after the national table tennis titles in Sydney. In Western Australia, I resided in Bunbury to work on constructing boilers for the first stage of the Muja Power Station. The demands of this new work situation and so many new people led to me using notepads and ballpoint pens as my primary means of communication. I worked out how to make this ploy work effectively for me and was soon a supervisor in charge of 15 workers. Writing things down also has advantages and over time I learnt not to apologise for doing so. With strangers, I usually had the first three or four rote conversational sentences to impress with intelligence or humour so they would continue conversing with me. I stayed in that combined mode of social communication for the next thirty years! In this day and age it seems unfathomable that someone like me was not availed of formal speech therapy till, at 30 years of age, I was referred by a doctor to a speech therapist visiting the Collie Hospital once each fortnight. In 1969 I moved to live in the Perth metro area with my wife and our young family and upon requesting speech therapy at Royal Perth Hospital I was put through an amazing assessment by two interns. Because I spoke to them via notebook and could barely vocalise they put me through a complex series of physical co-ordination tests. Much to my amusement they finally agreed to allow me an appointment with a speech therapist! Sometime after that I embarked on learning syllabic speech with a Sir Charles Gairdner Hospital speech therapist by the name of Florence Smith who had a slight lisp. Florence soon had me talking so well that I talked fluently in many shops around Perth – especially music shops, in quest of the Edinburgh Masker that delayed sound so speaking for some stutterers was made easy. Florence later recommended me to be part of the second ever live-in prolongation speech course at the hospital. I embarked with three other stutterers in December 1975. After being scrutinised together in a glass room we began our first day on 40 syllables per minute and by end of day four were talking fluently at around 200 syllables per minute. Our supervising therapists and psychologist employed a token system whereby each stutter deducted a food or drink token – I somehow lost two kilos that first week! However, I presumed my progress was fine until our taped interviews began, requiring seven minutes of perfect prolongated speech to pass the 10 or so assignments. Because I couldn’t really tell the difference between the two modes of speech control, my taped interviews were disallowed and, after being rejected 30 times, I simply broke down and it was suggested I leave the course. The contradiction of the situation was being able to look people in the eyes and talk more fluently than ever before, yet being labelled a failure. I went home and compiled a whole series of taped interviews with friends and workmates and maintained that good speech for months afterwards – long after at least one of the other participants had lost fluency. That amounted to one of the bitterest experiences of my life, with depressed and bemused contemplations about "the failure of success". Seven months later I suffered a debilitating lumbar injury. After being laid off work I took to writing a fishing book, aided by my numerous contacts as editor of a freshwater angling association I’d helped found in 1967. After publishing that book in 1979, I then embarked on researching and writing a history book for the local shire I lived in with the book being published in 1984. During that time I also worked as a local reporter and journalist. Though having no formal qualifications the research and reporting roles fitted naturally with notepad and pen and with my thorough knowledge of the area’s history. My stuttering seemed to be an open invitation for others to speak and to somehow trust me with their confidences. Around this time, I was increasingly into alcohol which allowed me an astonishing degree of fluency on some occasions and, at times, the emergence of a challenging clown persona some of my friends knew as "Gungadin". Subsequently, bereft with alcohol and nicotine addictions by late 1986, I attended the Holyoake course for addictions. Upon graduation I read a compiled poem to the gathered group and from there it was recommended I consult a clinical psychologist who could look at my speech situation. Said psychologist, Margaret Nicol, who later published two popular books, was especially intrigued with my early childhood and seized upon the first three chapters of a novel I had begun. Those chapters were mostly centred on the time my young school friend had been murdered back in the 1940s. Marg Nicol took my story to large psychiatric conferences in both Sydney and Chicago and upon delivering her talk in both venues said there wasn’t a dry eye in the place. Marg and I maintained therapy for two years overall at the end of which she had no conclusions nor could offer any real advice about my stuttering About this time, I returned to boilermaking, then out of the blue was offered a 12 month contract with the Conservation and Land Management Department to edit a substantial natural history publication about the Two Peoples Bay Nature Reserve to the east of Albany. This was a most enjoyable contract completed but not published in 1991. The following year I returned to speech therapy because others felt I could not survive with notepad and biro as I had been doing for almost 30 years! This time I was greeted with the friendly face of speech therapist Christine Davies who said I’d been so poorly treated in the past I needed a fair deal to put things right. Between September 1992 and early August 1994 I recorded 2358 hours of smooth speech practise (or 22 months averaging 107 hours a month or 27 hours every week). Most days there was quite considerable carry over into social speech. Although Christine was so impressed with my initial progress and enthusiasm she began to be concerned when I maintained such hours of practise for month after month. But around this time I began to realise that I had a proverbial ‘silver tongue’ and once the words became lucid my brain flowed with amazing integration! That period also included many months of Feldenkrais and even a brief excursion into Neuro Linguistic Programming. Although neither improved my speech I learnt much about relaxing musculature and relearning the movement of body parts, which has proven invaluable for sports coaching. Notes retained remind me that I had mostly given away communicating with notepad and pen by 1993 and my speaking voice seemed similar to my youth, with the pendulum swinging between times of fluency and regression. I was determined to keep going through the intermittent regressions by consistently maintaining those hours of daily practice. Overall, my fluency was markedly improved from before, especially if my diaphragm was in control of the speech process. Armed with a news report sent over to me from San Francisco, I talked myself into being the only known stutterer in Australia, at that stage, to receive botox injections into larynx muscles. Through arrangements by Christine Davies, I was duly assessed and injected with botox into several muscles controlling the larynx, by neurologist John Dunne who specifically catered for those with spasmodic dysphonia. My hopes of relaxing the throat muscles long enough to practise my diaphragm in better control of the speech process were dashed when I simply lost my voice for days – as do those with dysphonia – but my speech improvement was negligible. In 1995-96, I became involved with the Speak Easy groups in Perth and the monthly drop-in sessions at Curtin University. Such group situations were invaluable and, with the immense backlog of smooth speech practice from before, I was usually able to do a reasonable job in the Speak Easy groups. It was the sessions at Curtin where I excelled with breakthroughs of continuous smooth speech in front of varying groups of fellow stutterers and students. But then, as soon as I left the damn building, that ability would vanish. In mid-1996 I took a trade job in Kwinana with heavy overtime and was thus confined to the occasional drop-in days at Curtin. In 1997 I was diagnosed with a possible cancer of the salivary gland under my left ear. Following removal of the adenoma the surgeon apologised for severing a nerve connected to my lower lip, which was apparently a common occurrence. To this day that severed nerve causes an occasional quivering lip which adds yet another new dimension to my speech problem. After working almost four years midst the heavy industry of Kwinana, adverse effects on my lungs were noted. In 1999 flu symptoms dragged on for seven months and subsequently our family GP sent me for a chest X-ray. This revealed I had severe scarring of a third of my lungs and within a week further tests confirmed asbestosis – undoubtedly from years of boilermaking. Shortly afterwards, my second wife Ellen and I moved far away from the big smoke to Esperance on the south coast, some eight road hours south-east of Perth. The clean air down there has done wonders. Upon arriving there I could barely run 50m but over time have built up to a capacity of 6km coupled with sprint work. I also established a table tennis club in the town and subsequently coach 12-15 hours per week. All this has done wonders for maintaining fitness, to such a degree that each year when in Perth for pulmonary tests of lungs and physical capacity, lung specialist Bill Musk continues to be amazed at my progress. However, Esperance has the down side of being geographically isolated and with yours truly being a stranger in town I eventually drifted toward conversations on the internet. After making a few friends there I plucked up the courage to commence speaking with them via microphone and earphones. Amazingly, I gathered so much confidence I was soon into fluency with my friends on a daily basis. This continued for the first six months and thereby added an amazing new dimension to life. Unfortunately four months ago I regressed, and only recently managed to find my way back to reasonably lucid smooth speech though said fluency is subject to daily fluctuations. But most importantly some of my net friends stuck with me through the slump and did everything they could to arrest the slide and turn the tide back to fluent speech. Chatting to people via voice communication on the net can be a valuable tool for any stutterer, especially those who find themselves in isolation. This does not necessarily mean geographical isolation because plenty of stutterers in big population centres find themselves confined socially. The main factor is to establish genuine friendships via type chat before moving onto voice chat with them. It can be a marvellous way to practise smooth speech on a consistent, daily basis. In the final analysis my stutter journey has been a relentless roller coaster of highs and lows peppered with communication uncertainties. In many ways I’m surely a reflection of my era where recognised speech therapy was unavailable till middle age. Thus, obliged to muddle through as best I could, I eventually arrived at the alternative of socially communicating via pen and paper. Against most advises and odds I worked out my own techniques for survival and how to use that developed skill as a writer of modest success. In the mid-seventies at the prolongation live-in course I contemplated that bitterness of the failure of success. Standing here before you today and delivering this talk, I have so much wanted to present, has me pondering the success of the so-called failure of not being able to speak fluently. Upon reflecting back on a life of struggle that has been chequered with significant successes, despite the stutter cross that made the journey so uncertain, I have been somehow blessed rather than cursed with a very rich and very full life for which I am eternally grateful. p LESSONS FROM THE MASTERS: EVALUATING TREATMENT OUTCOMES Susan Block, senior lecturer in stuttering at the School of Communication Sciences, La Trobe University, Melbourne When asked to give a perspective on stuttering, Sue Block said she was at a disadvantage because she does not stutter. But she has spent an enormous amount of time with people who stutter. So she spoke about what some people who stutter have told her then gave a perspective on how speech pathologists treat such people. The impact of the problem is not related to its severity, she said. This is confirmed by evidence. Some say severity should be the requirement for deciding who should be treated. For example, they say children should be given priority according to syllables stuttered. Treatment for stuttering is very successful for many people, she said. There may not be one cause for stuttering. Different treatments or a different focus in treatments are needed at different times. Fluency can fluctuate remarkably. Some people grapple to attain fluency. The ability to maintain speech after treatment will fluctuate. Anxiety has a role in stuttering or in its perpetration. Ross Menzies, of Sydney, has written about the role that anxiety plays in stuttering. Some may have a social phobia. Evidence in getting control of anxiety doesn’t mean that you won’t stutter. It does not necessarily reduce the stuttering. The goals of those seeking treatment are:
Looking at the structure of treatments, all treatments are one of three types:
If you look at the balance of the treatments, do you focus on instatement, rather than the others? But the consistent message is that stuttering is a chronic condition in many adults. There have been changes to case mix funding. Now the emphasis in health funding is on those who have been hospitalised. Hospitals are no longer putting an emphasis on outpatient services. Achieving and maintaining fluency is difficult for some people. Achieving fluency does not remove the self-concept of being a person who stutters. The challenge of the speech pathologist is to address issues of self-concept, address issues of anxiety and to educate speech pathology students in evidence-based best practice. Sue Block outlined Oliver Bloodstein’s 12 "tests" of treatment success (formulated in 1995). The British Stammering Association has similar recommendations on its webpages. q TECHNIQUES: THE GOOD, THE BAD AND THE UGLY Professor Peggy Wahlhaus said she felt a sense of excitement at attending such a conference. She said that in 1952, as a 19-year-old student, she read a paper from a Mr Clemens about stuttering. She believed that this was the paper that would solve stuttering. She became very excited by it and believed that it would be possible for people to sit down and find the cure for stuttering. It hasn’t happened. "Have you noticed that people don’t stutter when they sing?" she asked. Distractions were a way of distracting a person’s mind. The speech of an adult stutterer is more complex than a young stutterer. Taking a big breath does help. But some people take on secondary behaviours when they stutter. Professor David Shapiro has spoken about "fluency tricks". There are conditions under which stuttering is reduced or absent. Prof Wahlhaus said techniques are good when:
Behaviour modification involves:
She believes a person’s decision to stop using a particular speech technique should be respected. Then there is the ugly element – the quick, quack cures. They can be ugly if they leave people with a load of guilt. r 38 YEARS OF SELF-HELP GROUP ACTIVITIES DEALING WITH STUTTERING (This is the full transcript of his speech, translated into English by his translator, Kazue Shinji.) My life today is dramatically different from that of 38 years ago, a time when I established a self-help group for those who stutter. At that time I was 21 years old and overwhelmed by my stuttering. Today I wish to speak about my experience with large numbers of adults and children who stutter whom I worked with through many years of self-help group activities. I believe that stuttering symptoms change and the attitudes of the person towards stuttering also change over time. This change, I believe, is caused by the "ability to change", which is a healing ability inherent in the individual, and is more effective than speech therapy or training. Since there is no effective medicine or surgery to cure stuttering, the only method left is speech training, which requires efforts by the person. Therefore, in order for stuttering symptoms to change, the key is the "ability to change" of the person who stutters and does the training, rather than techniques employed by the therapists. For good or bad, not many clinicians in Japan specialise in stuttering. In fact, many people who stutter take the bull by the horns and participate in self-help group activities and find clues for change, obtaining information from various resources and books, for example, without the help of professionals. The effectiveness of self-help efforts is no less significant than professional guidance. I can say this because I have seen a great deal of people who stutter who are hardly bothered by the condition. Stuttering symptoms change over time. Forty percent of children who stutter stop stuttering naturally without therapy. Preschool children often show large swings in the seriousness of their stuttering; sometimes they stutter and other times they do not stutter at all. It is possible to improve the symptoms of children if their parents are encouraged to adopt positive attitudes toward their children and the condition. Symptoms of school children also change greatly as they grow in self-esteem and develop confidence through going to school, relationships with friends and their roles in the classroom. Positive changes seem to take place when children lead full and meaningful lives, rather than simply going to speech therapy. Adults also have swings in the severity of their stuttering, and they tend to stutter depending on the situation. There are many people who in the past tended to stutter severely but now seldom stutter. I may be one of them. In fact, I have met thousands of people who stutter just like me in my 38 years of work in the field. They often had the jobs they wanted and had rich interpersonal relationships; in other words they were in situations that required speaking. Of course, they had experienced hardships at one time or another, but kept on going, refusing to give in to the condition. Changes in the severity of the stuttering were self-initiated, rather than a result of any formal effort to control the condition. In fact, it is quite difficult for people who stutter to intentionally control the condition. Until now, many treatment and speech therapy methods have assumed that "stuttering can be controlled". Techniques such as "speak fluently" and "stutter fluently" are actually very difficult to achieve, for both children and adults. This must be truly difficult because of the fact that many clinicians find it difficult themselves to use these techniques in dealing with stuttering. Do you not think it is about time for us to admit the fact that stuttering is difficult to control and much more difficult to cure? Rather than to challenge the status quo, it is more realistic and constructive to try to change the situation through self-initiatives. This can be achieved through changing one’s attitude to the condition as well as how we deal with it in our daily behaviour. In other words, the key is not to hide the condition or to avoid speaking situations, but to live life to the best of one’s ability. The stuttering problem can be solved through taking self-initiatives and being able to do what is necessary. In the end, this will lead to a change for the better in the stuttering symptoms themselves. I began to stutter when I was about three years old. I stuttered quite badly, but I was uninhibited in speaking openly and did not let the condition worry me. However, when I was in the second grade of elementary school my teacher left me out of a role in a play, which the whole class was supposed to perform, because she thought it would be terrible if I should stutter on the stage. This was the first time I began to think that to stutter is bad, and that I was an inferior human being and a disgrace. The stigma attached to me by other people tormented me until I was 21. At age 21, I undertook four months of speech therapy at a private speech clinic, but it did not cure me. In fact, none of the other 300 people who took the course were cured. However, this experience turned out to be beneficial for me because I was able to free myself from the fantasy that stuttering was curable and it provided me with chances to meet other people who stutter. It was in 1965 that I established the self-help group for people who stutter. My life changed dramatically through self-help activities. Even though my stuttering symptoms themselves remained largely unchanged, my attitude toward the condition greatly changed. I accepted the fact that I stuttered and I no longer hid the condition or found it necessary to purposely avoid speaking situations. I realised that in fact it was possible to build interpersonal relationships and make phone calls, things that I had previously thought were impossible to do. I began to feel less resentful and guilty, and although I still stuttered as severely as I always had, it was just that my attitude toward stuttering itself had changed. This in itself was a big change for me, but it also provided me with certain spin-offs. I used to believe strongly that I would never be able to become a teacher or get a job that required speaking in public. However, I developed self-confidence through many years of self-help activities and landed a job as a lecturer of a national university, teaching students who were studying to work with children with speech disorders. At the university I stuttered a lot while giving lectures, but after a few years I discovered that I no longer stuttered as much as before. While I was working very hard to cure or improve the condition, I did not see any changes in the symptoms but, looking back, I see that my teaching experience with stuttering was probably the most effective speech therapy I could have had. Many members of the self-help group had similarly managed to overcome the negative affects of their stuttering. From these experiences, I became confident that the key issue of the stuttering problem is living life to the fullest, rather than placing all one’s energy into trying to recover from the condition. In order to verify this I decided to travel Japan providing consultation to people who stutter. For three months, I visited 35 prefectures and gave 38 workshops, where I talked to many people who stutter. This experience of meeting such a large number of people who stutter led to an enlightening discovery: These were people who stuttered and yet lived constructive lives, having never taken speech therapy or other formal training. Since I had been in such distress because of my own stuttering, I had been under the impression that all people who suffer from the condition must be seriously bothered by it and were unable to live productive lives. The idea had been crushed. The discovery that not every person who stutters is affected by the condition proves that even if one is unable to cure one’s stuttering, it is still possible to live a comfortable and productive life. Earlier, I said I do not stutter as much as in the past. However, in the last few years I have begun to stutter frequently once again when I give lectures or make presentations. But I no longer feel anxiety, fear or stress. This is also how stuttering changes: Although I stutter once again, it does not bother me as in the past, because I do not regard it as bad, feel inferior or feel disgraced. My positive attitude toward my condition has not changed even though my stuttering symptoms may have changed for the worse. When I was about 10 years old, I had thought that stuttering was bad and disgraceful and that I was an inferior person – negative thoughts that compounded the actual condition. The hardships are the stigma, either inflicted on the person by those around them or often self-inflicted, something that becomes very difficult to deal with. In my case, I was unable to get rid of the stigma until age 21, when I established the self-help group. This also made me think that it is important for children not to develop negative images toward the condition so 15 years ago I organised a summer camp for children between the ages of 6 and 18. What I found was that the children’s symptoms changed dramatically through having them perform plays on stage. In addition, when the children saw adults who stutter organise the camp in such a fun way, they realised that it was, in fact, not a bad thing to a stutter after all and they became encouraged to take a more positive outlook on their own stuttering. This self-affirmation encouraged children to make presentations, give their opinions and perform recitations in school even though they stuttered. Just as adults’ attitudes regarding stuttering had changed through their efforts to live fulfilling and happy lives, so too did children’s. Through these experiences I became confident that changes in the symptoms of stuttering take place not simply by speech therapy or special training, but simply by taking care of oneself and living life to the fullest. There is, however, one argument of thought that says that first one should alleviate the symptoms of stuttering before attempting to conquer the world. This line of thought that seeks to alleviate the symptoms of stuttering leads to the denunciation of the condition. A negative notion toward stuttering causes people who stutter to think that they should wait to go into society until they are cured or until at least symptoms have been reduced. I believe that the role of clinicians or self-help groups should be to support those who stutter to go into society, even though they might have fear or anxiety regarding their condition. Complete elimination of the symptoms of stuttering or improvement in speech has always been the wish of people who stutter. However, this has never been successful and it is about time to help those who stutter to live full lives. If people who stutter themselves feel the need to pursue the treatment or improvement of the symptoms of their stuttering, does this not mean they are denying their own existence? We have been suffering from the stigma that stuttering is bad and disgraceful and that we are inferior human beings. To even consider that we should cure the condition or wish it be cured means denial of who we are and declaring that we are not fully fledged members of society, simply because we stutter. To conclude, I believe that an important role of self-help groups should be to eliminate the stigma from which we suffer. To this end, we need to let society know that we are able to cope and five full lives, even though we stutter. s THE PROMOTION THAT NEVER CAME Peter Dhu said the following three talks, on employment and discrimination, emerged from a discussion with Rick Gately, of Perth. Peter Dhu said some people had been treated unfairly because of their stuttering. As he had gained some control over his fluency, he figured if he could share his story then he could give something back. The third speaker in the session, Alan MacDonald (senior legal officer at the Equal Opportunity Commission), knows about discrimination. In his early career, Peter Dhu was a medical scientist. This followed four years at university. There was a shortage of medical scientists in 1979. He was employed in a hospital pathology laboratory, "down out of harm’s way". All he saw were test tubes. Sometimes doctors rang. His boss told him not to answer the phone. After working there for four years, he found new graduates were coming into the laboratory and he was expected to help them. He was applying for promotions. But others in the laboratory were given the promotions. So he saw the director of the pathology laboratory. He was told: "You should be thankful you’ve got a job." This was the turning point. He knew he had to do something about his stuttering. He inquired about speech pathology at the hospital where he worked. The hospital ran a fluency programme. After a two-week course, he could talk. That was 20 odd years ago. He has had his ups and downs since then. He went to his bosses and said: "I want a promotion." He ended up in management. Now he is manager of Western Australia’s organ donation programme. He noted that vocal chord donations were not so far away. "Now I feel I am being judged on merits, not on my inability to speak." He started collecting a few stories in Western Australia:
"In the eyes of the law, I am a criminal," Rick Gately said. For 32 years, he had "a very uncontrollable stutter". He spent the vast majority of his younger days going round speech pathologists. He was given the Edinburgh masker to try. It did not seem right. Although his stutter was severe, he wanted to be a police officer. But when he left school at 16, he felt he was limited to a small range of jobs. He started work as an apprentice painter. After doing a McGuire Programme, he was able to choose what job he wanted. He decided to become a prison officer. One incident that really stood out for him was in high school. Each child in class was asked to stand up and read out loud. The book was Watership Down (a novel by Richard Adams). As he waited for his turn, the fear and sweat coursed through his entire body. Each time a different child was brought up to the front to read, it was a great relief. When his turn came to read, he put his head down on his desk and stayed there. The teacher tried everything to get him to stand up and read out of the book. But he refused to budge. So the teacher put him on detention after school. When he was doing his apprenticeship, he also experienced discrimination against people who stutter. There were 50 people in his work team. He was the butt of the jokes. He said his overseer, who reminded him of Fagan from Charles Dickens’ Oliver Twist, said to the work team one day: "Make sure he doesn’t get a chance to talk to anyone. He’ll never get any work done." He put up with the taunts at work. In fact, they contributed to his skills because they gave him the strength to tackle the obstacles. He said he also became "a damn good painter". Two weeks before his wedding, he and two members of the bridal party decided to have a few drinks. They had a few pints in one pub then moved to another pub for a few more pints. When he tried to order at the second pub (in Northbridge, Perth), his head jerked and he got twitches. The barmaid told him he had had too much to drink and asked him to leave. He said that when he is angry his level of fluency improves. It led to a confrontation. The bar manager was called over. Because Rick Gately is a Yorkshireman, he said he doesn’t budge easily. Then the "hired eggs" (the bouncers) were called in. Things became vocal and angry. The police were called in. He tried to plead his case with the police. But they asked him to leave. He banged his hand on the bar and used "a foul word". The police arrested him forcibly, handcuffing him. At the police station, he was charged with being drunk and abusive in a public place. One hour later, he returned to the pub. He asked for a coke and was given a coke. Then the "hired eggs" threw him out. He has never set foot inside the pub again. He was summonsed to appear in court. He pleaded guilty, was convicted and was fined $Aust80. Now he realises he should have defended himself in court. He believes he should have taken the bar staff to court. But eight years ago, he didn’t have the level of confidence to take the matter to court. He wondered whether he was arrested because of his stuttering or whether it was because of his abusive behaviour. "Do I feel bitter and angry?" He said he used to hold a great deal of anger. But there comes a time when you just have to let it go, particularly when you have a family to look after. "Was it bad having a stammer? No, it wasn’t." He said he had two hands and all his senses, plus two big ears. The stuttering has put him through some truly incredible experiences. He has met some truly amazing people. On the first day of the McGuire course, he saw people truly change. "Don’t let your stammer hold you back," he said. Because of the strength he now feels he has, he is able to continue. "This is my stammer. You stammer is your stammer." He regards his stuttering as a bad psychological habit. The stuttering has got him into trouble but it has also got him out of trouble. He believes he will break the habit. u THE LEGAL RIGHT NOT TO BE DISCRIMINATED AGAINST: AN OVERVIEW OF Alan MacDonald, senior legal officer for the Equal Opportunity Commission, Perth Alan MacDonald said he cannot pretend he can understand what Peter Dhu and Rick Gately have had to deal with. Western Australia’s Equal Opportunity Act has a legal definition of "impairment". When the Act was first introduced in 1984, it was against the law to discriminate on the grounds of sex, race and political and religious attitudes. Since then, the Act has been extended to include impairments, which includes stuttering. Under the impairment provisions, 50 per cent of the complaints have been to do with employment. He said he only knew of one case in Australia under equal opportunity legislation that dealt with stuttering. It was in New South Wales last year and involved an employment situation. The complaint was dismissed but the reasons for dismissing the case had nothing to do with the stuttering of the complainant. There were other factors involved in the case. If people wish to lay a complaint with the Equal Opportunity Commission, they have to do it in writing. The commission will try conciliation. This is a controlled negotiation, aimed at keeping cases out of court. It tries to keep people away from a situation in court that some people might find difficult. He said the vast majority of complaints are resolved by conciliation. The Equal Opportunity Act is a state law. At federal level, Australia also has the Disability Discrimination Act, which is administered by a federal agency. It is an alternative pathway that some people might like to try but it has slightly different jurisdictional differences. He said there are exceptions to impairment discrimination. In employment, an employer is entitled to raise a defence that the person who has alleged discrimination would not be able to do the job or can’t do the job or that any call to change facilities at the workplace to accommodate an employee might cause hardship to the employer. But the onus is on the employer to provide evidence in this defence. "It’s a big ask of the employer," Alan MacDonald said. "If you think you have been discriminated against, it is up to the employer to refute it." During question time, he revealed that the complaint can only be lodged with 12 months of the incident. The complaint has to be in writing except where the person can’t read or write, in which case other arrangements can be made. FEBRUARY 18: v AN OVERVIEW OF THE SUCCESSFUL STUTTERING MANAGEMENT PROGRAMME Professor Dorvan Breitenfeldt, PhD, formerly of Eastern Washington University, Cheney, Washington state Professor Dorvan Breitenfeldt said he was thrilled and honoured to give a presentation to the congress. He said he was going to talk about how the Successful Stuttering Management Programme (SSMP) came about. Phase 1 of the therapy involved letting stuttering out by the elimination of avoidances and going directly into all blocks. It involved reducing avoidances and situational fears and building up the participants’ self-image. It taught understanding about stuttering through education. Phase 2 involved teaching stutter handling techniques to control and manage the stuttering, transferring the handling techniques to real life speaking situations, developing lifestyle changes and developing a maintenance programme post-therapy. Referring to his experiences as "a stutterer’s odyssey through life", he commented on his long wanderings, marked by many changes of fortune. Life began for him on a farm in the American Mid-West in 1930. The school he attended only had one classroom. He was an academic overachiever. He hid the fact that he was a stutterer, even from his parents. By grade 8, the severity of his stuttering had worsened. In grade 9, he dropped out of school for three years. He developed a seriously damaged self-image. At the time, he shed many tears. He felt his life was at a standstill. Then he saw an advertisement for the Benjamin Bogue Institute, in Indianapolis, Indiana. It said the institute could cure stuttering and would send information in a plain envelope. He sent for the information and the envelope arrived. Later he showed the information to his parents in a tear-filled evening. His parents were sceptical about the information. So they took him to the doctor, who referred him to a clinic in North Dakota. The clinic could find no physical reason for his stuttering. He was referred to the University of Minnesota where he attended a six-week group therapy course. During the course, he developed what he called "lucky fluency". He returned home with essentially fluent speech. It allowed him to have a social life. At 17 years of age, he returned to high school, starting his freshman year. He was fluent for about three months then experienced relapse. He returned to speech therapy at the University of Minnesota, one year after his first course. But this time he had the same amount of stuttering at the end of the course as he had had at the beginning of it. However, he had learnt many speech tools to help him. He graduated from high school at age 21. He decided to go to university to study speech pathology. His stuttering was going up and down. He felt the need to advertise his stuttering. At the University of Minnesota, he joined the Army Reserve Officers Training Corps. Stutterers were not allowed to be officers in the military. He needed to pass a speech test to be an officer. He refused to be denied the chance to become an officer. He became the only stutterer to get through the programme. His university study went well, despite having to battle the perception that a stutterer would not make a good speech pathologist. He graduated with honours in speech pathology. After completing his masters degree, he served as a second lieutenant in the army, later becoming a first lieutenant. Then he worked for three years at Idaho State University, teaching speech pathology and directing stuttering workshops. He resigned to study for a doctorate. After graduation with a PhD, he began working at Eastern Washington University. It was a one-person programme for the first three years. He found he always had to advertise his stuttering during classes, committee meetings, presentations and social functions. He said his passion throughout his career has been for hands-on contact with stutters and developing skilled clinicians to treat stutterers successfully. He said his stuttering is still there in retirement and can be just as severe. He believed that stutterers "need to live successful, fulfilling lives despite this ball and chain". For many years, he taught a 9am class. This was a speech situation that helped him get through the day. About the time he retired, the university set up the Dorv Breitenfeldt Endowment, to provide support for the university’s SSMP programme. It has raised more than $US200,000. In his personal life, he said his best decision was marrying Diane in 1994. When he looks back, he wonders what might have happened if he had not sought stuttering help at age 17. He has admiration and respect for those working on stuttering. (Editor’s note: Most of this speech appears to be based on the paper that Prof Dorven Breitenfeldt wrote for last year’s International Stuttering Online Conference. The paper is available at www.stutteringhomepage.com ) w THE SPORT OF SPEAKING Dave McGuire, founder of the McGuire Programme Dave McGuire said he started the McGuire Programme in his house in Holland in February 1994. In February the following year, graduates of the programme began helping new students. From February 1999, graduates began instructing McGuire courses. In February the following year, graduates began running training weekends. Dave McGuire, an American with a degree in psychology, said Joseph Sheehan was the speech pathologist who had most helped him over the years. While working in Amsterdam, Dave McGuire took part in a breathing and speaking course, run by an opera singer. It involved putting a chord round your chest. After the course, he relapsed, which he found devastating. But he said he was lucky in that he had had training from Sheehan to fall back on. He tried stuttering on purpose. This gave him back his fluency. He figured he was on to something. So he set up his programme. He said he loved seeing people working together on their speech. He met a journalist who wrote a number of articles about the programme and sent them to newspapers. As a result, a guy in Britain, called Derek, wrote to him. That led to courses in Britain. The news spread and he was asked to run courses in Ireland then Australia. At that stage, he was doing one course a month. He felt burned out. So he instructed his students in how to run the courses. Now the McGuire Programme has an international structure. It has a number of regional directors. Below them are the course instructors and below them are the personal coaches. When people sign up for the programme, they are given a lifetime membership. They undertake a four-day course, from beginning to end. Also on the course are instructor interns. People are assigned a personal coach on the course, and these people keep track of the participants for about a year. Dave McGuire believed that was pretty much all the help that stutterers needed for the rest of their life. One of the features of the courses was that old graduates came back to help with the programme. As well, refresher courses were held, usually lasting a weekend. The programme was based on a sports philosophy. He noted that a good percentage of people who had been through the programme had won speaking awards. The reasons for the success of the programme, he believed, were that people were motivated to be there, it emphasised a sports mentality, there was a strong work ethic and participants were encouraged to be courageous. He showed statistics gathered by the McGuire Programme to measure the success of its courses. In 2000, the overall success rate was 59 per cent but last year it was 72 per cent. He said quality control was part of the programme, as a way of lifting the success rate. Dave McGuire said that if anyone was interested in doing an independent evaluation of the McGuire Programme they should contact him. Richard Younis said Stuttering Innovations is a stuttering programme for children aged from 8 to 17. A total of 150 families have been helped since the programme was set up in April 2001. He said conventional speech therapy has helped many children but not all of them. He stuttered when he was young. His parents had him attend many speech courses. He played sport in his childhood and was reasonably successful at it. But otherwise he felt paranoid and frustrated. He escaped into his shell until his late 20s. He felt that stuttering held him back during his school years. Learning was not a priority. He had a game plan to get through the school day without stuttering. Usually it involved not speaking in class. He also found it difficult talking to the opposite sex. As an adult, he did a McGuire course. It was successful for him. He said Stuttering Innovations came about after a friend had asked for help in treating his son, Sam. The treatment was successful. As a result, he started his own child and adolescent programme for treating stuttering. But first he approached the McGuire Programme to see whether it would set up a child and adolescent programme. It decided such a programme was beyond its resources. Stuttering Innovations teaches children and adolescents how to sit and how to stand. The company devised a new breathing belt for participants to use. It developed training support media, for the children to take home and work on. He brought in Helen O’Grady, from a Sydney drama school, to help the children, and it proved beneficial. Richard Younis said all the trainers in Stuttering Innovations had gained safety clearance to work with children. The courses gave advice, knowledge and a whole lot of fun. He said he doesn’t regard stuttering as a disease. He sees it as a human behaviour that can be treated. He explained the theory behind blocks. During the intensive courses, the child and the parents are trained up. The family has a role in the programme to make sure the child does the work. The parents take on a coaching role. Stuttering Innovations will enter phase 2 this year, in which young adults who have been through the course are introduced as training instructors. He said the future looks bright. This year and next year were going to be a time of consolidation. There was already a waiting list for the course to be held in July. In June, the company will go international with its first course in New Zealand. The company hopes to take its courses to Europe and North America at a later stage. He hoped people at the world congress would come forward to help out. Stuttering Innovations judges success by the level of customer satisfaction. Richard Younis said if value for money was the criterion then the success rate was already "99 per cent". He read out a letter that he had received from a man called Ian McDonald about his son, Liam. Mr McDonald is head teacher for special education in New South Wales. He said in the letter that Liam had had difficulty with his speech from an early age. By age five, he had a significant stutter. His self-confidence had plummeted. Liam was taken to doctors, paediatricians and speech pathologists, with minimal success. At school, others mimicked Liam’s stutter. His mother Susie heard about Stuttering Innovations. Going on the course was hard but life changing. There were tears, laughter and fear. But he felt those running the course were dedicated professionals, with skills and competencies. He was proud of Liam. The course had restored his self-esteem and allowed him to participate successfully in life. For those who wondered whether the course was a quick fix or a long-term success, Richard Younis recounted the story of William Orr. Two years after taking part in a Stuttering Innovations course, he was selected for the fourth most speaking role in a school rock musical. His mother wrote to thank the company for giving Will the fluency skills he needed to take part in the musical. y THE EXPERIENCES OF A LATE-ONSET STUTTERER: AN ALTERNATIVE TO BOTOX? Dr Malcolm Nearn said his voice started to deteriorate in 1989, at the age of 53. Over six months, he became hoarse and gasping for air. He developed a nervous cough and his face became red with strain. This alarmed his business colleagues. They feared that he was about to have a stroke. He became very depressed. While living in London, he had passed a Bachelor of Science while working and going to evening classes. He gained second-class honours. Then he did a doctorate while working and with a family, studying in the evening. He regarded himself as a driven character – at the age of 50, he ran a marathon. He emigrated from England to Australia in 1974. Out of nothing, he developed what he said was the best research and development section in his area in Australia, doing research into chemicals which resulted in products such as Savlon and sunscreens. He turned it into a $Aust30 million business. He was involved in the Standards Association and on many committees. He was used to achieving and was successful in his chosen career. He regarded himself as a competitive person – his bad sportsmanship was legendary. He was used to fighting political battles and winning. He always delivered products on time. Up to nine times a year, he gave university lectures, lasting three hours at a time. He had all this going for him. Then, over six months, everything turned "pear shaped". He became reluctant to speak. He was regarded as less decisive. People saw him as much more easily manipulated. He suffered loss of self-esteem. He became hesitant, nervous, passive and with more hand movements. Some thought he was becoming "effeminate". "None of the experts that I saw bothered to find out what I was like before," he said. He was desperate to find a solution. If he had been asked to stand on his head to cure himself, he would have tried it. The doctors he saw seemed to regard him as neurotic. He went to a number of ear, nose and throat specialists. One of them even said: "I think you should retire." This was just silly. It showed the professional’s lack of empathy. So he tried even harder to work his way through the blocks. He felt he was on a medical hurdy-gurdy. Then one specialist diagnosed "functional dysphonia". The specialist believed the muscles surrounding his voice were contracting too much and thought it was probably stress related. He was sent to see a speech pathologist and a psychiatrist. He had seen three psychiatrists before a fourth one diagnosed "spasmodic dysphonia". It took five years, from the onset of the condition to the correct diagnosis. Spasmodic dysphonia is believed to be entirely neurological in origin. The muscles controlling the vocal chords over-contract. In some cases, it involves the adductor muscles (which close the vocal chords). In other cases, it involves the abductor muscles (which open the vocal chords), opening the glottis too much and wasting a lot of air. He was offered a botox injection in one set of muscles. Another option was surgery. But he found this option was no longer offered because the condition was expected to return three to five years later. Before he was diagnosed with spasmodic dysphonia, a general practitioner suggested speech therapy. So he went to Campbelltown Hospital, in Sydney, and Lidcombe. But the therapy really did not help. If there was a point to some of the therapy, it was never explained to him. Only the soft contacts proved useful. He tried the Alexander Technique. This involved using your body. Dr Nearn believes everyone with a speech problem should try this technique. The fourth psychiatrist he visited also tried hypnotherapy on him. He later found that a survey conducted in 1992 discovered that those with spasmodic dysphonia had to visit on average four doctors before their condition was correctly diagnosed. The condition is more common in women than men. Spasmodic dysphonia has some similarities to stuttering. There is the same cycle of fear and panic. You do get blocks but you don’t have any feared words. But there are differences. With spasmodic dysphonia, hard sounds make you lose breath, such as in the sentence: "The cake is great." Speech is best in the morning but worst after drinking alcohol. Also you can’t sing. Dr Nearn enrolled in the McGuire Programme. After doing the course, he said the technique helped. He believed his voice had returned to what it had been before he contracted spasmodic dysphonia. It had given him good posture. It made him face his fears. He believed assertiveness training was very important, as it helps to overcome the problem of not expressing your opinion. He finds his speech is less effective when tired, when speaking a lot or when speaking in a competitive environment. He values the feedback he receives from people he has spoken to after doing the McGuire course. Dr Nearn said people who go through the course are wonderful. Three months later, their personalities have changed and they want to help other people who have the problem. He believes that he is probably a somewhat nicer person now than he was before. z THE JOURNEY: PAST, PRESENT AND FUTURE Bruce Rowe said his stuttering began later than most people – at age eight. This was a traumatic time in his life. There was a family history of stuttering. His mother was a stutterer but she was a determined person. She made sure she wouldn’t talk if she couldn’t be fluent. His younger brother also stutters but he hasn’t maintained his speech as well as he has. He listed all the others who stuttered in his family, including a son. During childhood, he suffered taunts and dramas. He can remember some of them vaguely. Some of it happened at school but a lot of the taunts happened at his church. But he had some very good friends. A geography teacher tried to give him some assistance during class but it didn’t help. In year nine, the headmaster told his parents: "I think your child should leave school now." In adulthood, the taunts and dramas continued. Bruce has painful memories. One example was using the phone. He worked in a building 10 or 12 storeys high. If he wanted to talk to someone elsewhere in the building he wouldn’t use the phone. He would use the stairs. Another example was a work colleague who didn’t like him. He started punching him. One day when he was in a shop, his speech was mimicked. His wife walked out in disgust. In his spare time, he umpires baseball but said he experiences no speech problems in this role. One of the rules of baseball is no one can question umpires’ judgment calls. Last winter he was umpiring a grand final. The third baseman questioned one of Bruce’s ruling. He asked for the baseman’s name then ordered him off the field. The baseman’s son also played in the same team and he was moved to third base. He began to mimic Bruce’s stuttering. Bruce asked him his name. "S-S-S-M-M-M-I-I-I-T-T-T-H-H-H" was the reply. He was ordered off the field. The baseball authorities gave the son a four-week suspension. Pre-treatment, when he was about 16, he heard someone laughing behind him. He turned round and found a grey-haired manager laughing. He was laughing at Bruce. He remembers going for a job as a personnel assistant. From the opening question, he had the answers. But he couldn’t get them out. Nowadays, interviews don’t often give him a problem. He prays before going in. He learnt the smooth speech technique at Prince Henry Hospital, in Sydney, under Ashley Craig. That gave him far more control over his speech. He became involved in the Youth Speak Easy programme in Sydney, working with Mary Cassar. The meetings were held in homes once a month. Such was the need for this programme that he was told: "If it wasn’t for you, we wouldn’t have anything." He has appeared on television. The first time was "horrible, speechwise". The second time was better. He has also spoken on radio – both live and recorded – and he has undertaken newspaper interviews. Because of an interest in politics, he stood one year for the local council. He missed being elected by 300 votes. He values the support of this family. "Without their support, things wouldn’t be the same." He is nearing retirement age but hopes to continue working part-time. He and his wife have undertaken some overseas travelling recently. Tasks tackled have included asking for directions in a strange country and bargaining at markets. They are planning some more overseas travel. The spiritual aspect of life is important to him. While his family is important to him, he believes he could not have got through things without his Lord and Saviour. aa PERSONAL EXPERIENCES WITH THE SPEAK EASY ASSOCIATION OF WESTERN AUSTRALIA Sandy O’Keefe, who has belonged to Speak Easy for 23 years, said it was great to be at the congress and fantastic to mingle with the other delegates. "I had the same problems as a child as others." She was born in Sri Lanka but moved to Australia at age three. Coming from a different culture, the attitude was: "Don’t rock the boat. Fit in with others." Her speech problems were worse when she was young. She did a smooth speech course at Sir Charles Gairdner Hospital, Perth, 23 years ago. Then she joined Speak Easy. She served as secretary of Speak Easy in Western Australia early on. But she didn’t want to serve on the committee. She went to a change workshop, where she worked through her relationships. She was motivated with a need to learn – reading many books, trying meditation, delving deeper and using motivational tapes. "Every day is a new experience," she said. When she was elected president of Speak Easy in Western Australia last year, she was thrown in at the deep end. There were many obstacles and things have been hectic, putting together events such as movies by Burswood (where 100 per cent of the profits go to the organising charities). She was also interviewed for Woman’s Day. Being on the committee of Speak Easy has been rewarding and has given her many insights. She has given numerous speeches at many functions. Three years ago she believes she would not have had the confidence to do so many things. "Being involved has given me more than I would have put in." She has visions for Speak Easy. There is so much more that we could be doing, she believes. bb ACCESSING THE TELEPHONE: RELAY MAY HELP Michelle Fountain said the Australian Communication Exchange is a not-for-profit organisation. It is funded by a levy on telecommunication companies in Australia. Under Australian law, any service has to be provided for everyone. As some people with hearing and speech disorders can’t use the telephone, the telecommunication companies are required to fund such a service for those people. They are levied a total of $14 million a year to fund the work of the Australian Communication Exchange. The exchange has been running since 1995. It provides telephone access to:
The national relay service provides:
In the case of an emergency – police, fire or ambulance – those signed up to the service dial 106. There are those people who always use it, some who sometimes use it and some who never use it. The service is available 24 hours a day, seven days a week. If someone rings you through the relay service, the first words you will hear from the relay service officer is: "This is the national relay service . . ." cc OVERALL ASSESSMENT OF THE SPEAKER’S EXPERIENCE OF STUTTERING (OASES) Judith Eckardt asked: "How should we measure the success of stuttering treatment?" Different therapies work for different folks. "But I firmly believe stuttering is much more than the stuttering." In the past, body function was used. Success was measured according to fluency counting, for instance the number of blocks or the number of repetitions. Other ways were to observe the reduction in severe emotional reactions or maybe to measure brain function. Judith Eckardt believes that a better measure is needed. She spoke about the Overall Assessment of the Speaker’s Experience of Stuttering (OASES), a way of measuring success that has recently been developed in the United States. It is so new that details about it have not been published yet. OASES is split into four parts:
Under general information, questions include: "How consistently are you able to maintain fluency day to day?" (Answer on a scale from one to five.) "How often do you say exactly what you want to say?" "How knowledgeable are you on treatment? (Answer on a scale from "extremely" to "not at all".) Under reactions to stuttering, questions include: "How often do you feel lonely?" "How often do you break eye contact?" "Do you avoid speaking in certain situations and to certain people?" Under communication in daily situations, questions include: "How difficult is it at work talking to clients?" "How difficult is it to participate in jokes?" Under quality of life, questions include: " How much does your stutter affect your relationships in your family?" "How much does your stuttering affect confidence in yourself?" dd BULLYING AND TEASING OF CHILDREN WHO STUTTER Marilyn Langevin said she has been working with children who stutter for 15 years. She told a story about a "sticky speech boy", in the hope that it might bring back experiences to people at the congress. She asked: "Are children who stutter teased or bullied more than others?" Research showed 48-58 per cent of elementary-school pupils are bullied. Of children who stutter, 81 per cent reported being bullied at school. In fact, 56 per cent reported being bullied at least once a week. When adults who stuttered at school were asked whether they were teased during their school years, 83 per cent said they were. She believes work can be done at an individual level with conflict resolution strategies and assertiveness. At a broad level, she suggests:
(Further details of her Canadian anti-teasing and anti-bullying programme are at www.tab.ualberta.ca ) ee USING TIME-OUT TO TREAT ADVANCED STUTTERING Diane Franklin said she studied the effectiveness of using time out to treat stuttering as part of her thesis for a Master of Science degree. She said she found incredible success with a simple operant method. She was aware that a time-out treatment programme alone was not enough but believed that the time-out approach could be added to therapy tools. She believed it was important to treat clients individually. The procedure for her research was simple enough. It took place in a quiet room. A black tin box was placed between her and the client. She activated a light whenever she heard stuttering from the client. He or she was expected to cease speaking each time the light was turned on. On the screen, she showed a "more snazzy" version of the type of tin box she used in her research. It had a light and a buzzer and could also be used as a speech rating machine. She regarded the time-out treatment as a form of punishment within the operant conditioning framework. It was an interruption to speech and the client was expected to observe a period of silence following the interruption. Her study backed previous research into time out. It showed it was a powerful tool. It alerted people to their stuttering. The research findings included:
She suggested that a treatment programme be devised and a clinical test be undertaken. She also found better results with the adolescents in the study. There was better carryover and they had better motivation. But clients didn’t need to be motivated to gain a benefit from the technique. In question time, she said clients were able to transfer their skills to the outside world after the first couple of sessions. ff PREDICTORS OF OUTCOME FOLLOWING INTENSIVE TREATMENT FOR STUTTERING IN ADULTS Susan Block said treatment success is usually measured according to the amount of stuttering. It involves quantitative measures. She undertook research (with Professor Mark Onslow and Ann Packman, both of the Australian Stuttering Research Centre, University of Sydney) to look for the factors that would improve long-term fluency for those seeking treatment on stuttering. All participants in the study were given treatment for stuttering for nine hours a day over five days. This was followed by seven follow-up sessions of two hours a week. The research was undertaken from 1998 to 2000. A total of 80 people took part – 13 women and 67 men – with only two dropping out. The study generated a huge amount of speech data across a long period of time. Pre-treatment, the participants averaged 7.9 per cent of stuttered syllables. Immediately post-treatment, this fell to less than 1.0 per cent of stuttered syllables. The study found there were no non-behavioural predictors of long-term speech outcome. Short-term, the only predictor was the amount of stuttering before treatment, measured in percentage of stuttered syllables. Long-term, it was found that how fluent clients were three months after treatment bore some relationship to how fluent they were long term. The implications of the study were:
Professor Ashley Craig said the research he was reporting on was from a study that had just been completed. The results have not yet been published. What causes stuttering? Is it brain related? He said researchers were not entirely sure. It was either a psychogenic or a physical problem. If it was psychogenic, anxiety or personality factors could cause the stuttering. If it was a physical problem, a chemical imbalance or a brain injury could cause the stuttering. He said a wise scientist should always keep an open mind. Best evidence supports the idea that stuttering (in the absence of accidental trauma) is a developmental problem caused by lowered neural resources in speech. The evidence for this was a lack of real support for a psychogenic cause. (For example, children who stutter should be more anxious but research has not found this.) Many studies find brain-activity differences between adults who stutter and those who do not. The weaknesses in these studies are:
"We are reasonably sure that EEG does not measure intelligence," he said. EEG can tell a lot about normal brain function, such as the amount of activity in the 8-13Hz wave (the alpha wave) present during speech. Increased 8-13Hz in the speech areas does significantly lessen processing, suggesting that the brain is less active during speech. The results of the study showed:
FEBRUARY 19: hh ANXIETY IN ADULTS WHO STUTTER Professor Ashley Craig said people always need to be a bit anxious. An example is exams, where anxiety pushes people to perform to a higher standard. So anxiety is a natural function, not to be despised or got rid of. Psychophysiological ("a wonderful word") is the study of the relationships between the brain, body and thoughts. Anxiety is a normal function of the body. If you saw a crocodile or a buffalo and you weren’t anxious, you might try to pat it. Funnel-web spiders are deadly. You should feel anxious about them. If they sting you, they can stop your heart. They can kill children. Prof Craig said: "I don’t want to stop my anxiety of spiders or you’ll read in the paper that Professor Craig was killed by a funnel-web spider." Anxiety disorder is prevalent in society. Simple phobias can turn into complex phobias. There are two types:
The more anxious you are the less brain capacity you have. "This is Law No 1 of anxiety and is irrefutable," he said. Anxiety can lead to depression and disphoria symptoms, such as: "I don’t want to get up." There is a relationship between stuttering and anxiety, Prof Craig said. The association between psychological factors and disease in the health area has been explored over many years. A number of diseases, such as cardiac heart disease (CHD) were believed to be caused by, or at the very least strongly associated with, psychological factors. Heart disease has many contributing factors. Psychological factors used to be given secondary roles. Now people believe that living with CHD can result in distress and psychological complications. Theories of stuttering that emerged in the early to mid-20th century propagated the idea that psychological factors were secondary to the physical problem. Children, aged 8-12 years, showed fairly normal levels of trait anxiety. But research since then suggests that anxiety is a reasonable reaction to some of the symptoms of stuttering, that children aged about five years with language and speech disabilities have an increased risk of anxiety disorder in early adulthood, and that physiological differences exist between people who stutter and those who don’t. Are adults who stutter generally more anxious than similar people who do not stutter? The answer will affect the nature of treatment or self-help. In the mid-20th century, anxiety was believed to play a central role in stuttering. Later it was not seen as having a central role. Prof Craig said he published a study in 1990 that showed that anxiety did have an effect on stuttering. He regarded it as a sea change in research on the subject. But he was highly criticised at the time for his view. Last year, Prof Craig and others did a randomised study of 12,000 people. They measured the presence of stutters and anxiety. They found that only a minority of those who were found to stutter had sought treatment. In conclusion, Prof Craig said it is more than likely that anxiety has an important role in stuttering. He recommended that people who stutter should learn anxiety strategies. ii A NEW PARADIGM FOR STUTTERING (This is a transcript – slightly edited by John Harrison – of his presentation, found on the internet by Robert Strong, of Christchurch, New Zealand.) (The speech began with stuttering demonstration.) There was a time when I was so petrified by having a moment that was not filled by words that I would sooner die than stand up here and be silent. I’m pleased to say those days are long past. I can’t think of anything more fun or more fulfilling than standing in front of an audience and feeling like I have something worthwhile to say. The stuttering you saw a moment ago is indicative of how I would have spoken if you were in my high school class and I was up in front of you giving an oral report. My disfluencies began when I was three and my speech blocks started appearing a few years after that. Unlike those who stutter most of the time, my stuttering was very situational. I could talk just fine when I was in the schoolyard chatting with my friends or playing football. But when I had to talk to the very same people in a classroom … or when I had to talk to an authority figure … or stop a stranger on the street to ask a question … or go to the market and ask for a container of milk … or get on a bus and ask for a transfer … I almost always had periods when I would lock up and not be able to speak. So I know a lot about stuttering from the inside. I dealt with it until I was about 30 years old. And as a member of the National Stuttering Association for over 27 years, I’ve been intimately involved in all aspects of the stuttering community. My participation in the NSA has given me exposure to a huge stuttering population. Not only did I function as the Associate Director for 14 years, I also participated in meetings of the San Francisco chapter for over a decade. And I was editor of the NSA newsletter, Letting GO, for nine years. I’ve also conducted workshops all over the US for people who stutter. And I’ve run workshops in Canada, Ireland, the UK and Australia. Over the last 15 years, I’ve had extended correspondence on the internet with literally thousands of stutterers around the world. I’ve taped scores of interviews. I mentor people on the net from many countries. I do coaching sessions over the phone. And I’ve followed people’s lives, some for as long as three decades. All this has been quite a learning experience. It has also validated the conclusion I came to almost 35 years ago … that for all the years we’ve been trying to understand stuttering, we’ve been using the wrong paradigm or model. We have incorrectly characterised what stuttering is all about. But first, how many people are good at math? Okay, I have a little puzzle for you. These numbers are in this order for a particular reason. Can you tell me why they are in this sequence? 8 … 5 … 4 … 9 … 1 … 7 … 6 … 3 … 2 … 0. Take about five minutes or so and see if you can solve it. (Really take five minutes! And don’t cheat. Remember, you’re being watched.) Figured it out? Many of you could spend a week trying to solve this puzzle (as I did) and still not find the answer. Why is that? Let me ask you – did I make it easier or harder for you to solve? Harder, you say? Why is that? Oh, you’re telling me I led you astray. I got you thinking along mathematical lines when I asked: "How many of you are good at math? I got you to use the wrong paradigm. I’ll copy to it. That’s just what I did. And you went for it. Do you know what a paradigm is? A paradigm is a filter through which we look at the world. A paradigm tells us what’s important to pay attention to … and what’s not. It’s the way we frame reality. For example in governance, a democracy would be one kind of political paradigm. A dictatorship would be another. Communism would be a third. There’s also a monarchy, oligarchy, socialism and so on. Each paradigm shapes how you look at governing people. Thus a crowd gathered in the square might be perceived by the head of state very different, depending on whether he was looking at it through the filter of a democracy, dictatorship or another kind of political paradigm (filter). In order to find the answer to the number puzzle, you had to approach it from within an entirely different paradigm. You had to drop the idea that this was a numerical puzzle and think outside the box. (If you still haven’t figure it out, the answer to the puzzle is the numbers are in alphabetical order.) So what can we conclude from this? We can conclude that if you don’t use the right paradigm, the problem at hand becomes impossible to solve. This is precisely what has happened with stuttering since the development of speech pathology over 80 years ago. Let me give you a little background. The birth of speech pathology is attributed to Carl Seashore who back in the early 1920s was head of the Department of Psychology and the dean of the Graduate College at the State University of Iowa. Although interest in speech and hearing processes was developing in a number of universities, it was Seashore who really moulded the new discipline. The next point I find particularly interesting. Originally, speech pathology was not just focused on the production of speech. Rather, it was conceived as an interdisciplinary specialty that focused on the scientific study of human communication. And listen to what it included – psychology, speech, psychiatry, otolaryngology, pediatrics, child development. In short, it was a discipline that looked at the whole person. Now, into the picture comes Lee Travis. In the early 1920s, Lee Travis was a brilliant undergraduate at Iowa. Seashore recognised the potential of the young student, and in part designed the new specialty of speech pathology around Travis’ talents. In 1924, Travis became one of the first people in the world to receive a PhD based on study in this new field. Travis stayed on at Iowa and headed the programme through the 1930s, a period during which many of the future leaders of the field ended up as graduate students. In the late 1930s, he left Iowa to become a professor at the University of Southern California. When Travis left Iowa, Wendell Johnson, one of his prize students, took over the speech programme. Johnson was a different kind of bird. Whereas Travis was basically a research scientist, Johnson’s interest was in developing effective therapy programmes. He had made a name in general semantics and his diagnosogenic theory soon became the prevailing view of how stuttering developed. Johnson maintained that stuttering was caused by the parents' misinterpretations of their child’s speech. They confused the child’s normal disfluency for stuttering. In doing so, they required from the child a level of performance that the child could not attain. The subsequent reactions of both child and parents resulted in a worsening of the child’s speech. By the early 1940s, the way people viewed stuttering was being influenced by four widely accepted misconceptions. First, there was the belief that all the various different kinds of stuttering were basically a manifestation of the same problem. This idea goes all the way back to Lee Travis. Listen to this quote from a chapter on how to deal with stuttering that Travis wrote in 1926 for a book called The Classroom Teacher. "Basically," said Travis, "stuttering and stammering are the same; practically, there is a slight difference. Both are due to the same causes and consist in the malfunctioning of the same mechanism, yet there is a slight difference in this malfunctioning. "Stuttering," said Travis, "may be thought of as an inability to combine syllables and words into words and sentences, which results generally in the repetition of the sound or word causing the difficulty. It is in the majority of cases an incipient form of stammering. "Stammering, on the other hand, is a complete block in the flow of speech. At times the individual seems utterly incapable of producing the desired sound. He is, for the time being, obliged to give up entirely his efforts at speech production." Travis goes on: "More often the same person will stutter one time and stammer another. In this discussion stuttering will be used to include both terms." Believing that all stuttering was essentially a variation on the same theme was misconception number one. And it caused more confusion through the years. Misconception number two was fostered by Wendell Johnson. His diagnosogenic theory, as I mentioned previously, focused on the way the parent related to the child’s speech. That, according to Johnson, was what caused stuttering. Period. End of discussion. Well, he didn’t have the answer. All he had was a piece of the answer. But as a result, people stopped looking for any other contributing factors. The third misconception came about because many of Johnson’s students at Iowa were headed for jobs in the school system. What do teachers and parents and school administrations look for? They look for fast, efficient answers. If Johnny can’t read, let’s teach him to read. If Johnny can’t do math, let’s teach him math. And following the same logic, if Johnny can’t speak properly, then let’s teach him to speak properly. It built on the belief that stuttering could be addressed with a simple, direct approach, similar to how you might approach an articulation problem. Once again, it discouraged people from looking at the whole person. The fourth misconception had to do with the belief that a third party observer could determine to a certainty whether or not someone was stuttering. Most stuttering research involved third party observers. I’ve had people tell me: "I know you’re a stutterer because I heard you stumble on a few words. The truth is, someone may be fairly disfluent and yet be totally relaxed and unselfconscious about their speech and never once actually block. Another person may sound totally fluent, and yet may be doing a great deal of avoiding and substituting and be living in constant fear of blocking. What was lost over the years was the original idea that dealing with stuttering called for an interdisciplinary approach that addressed the entire person – their emotions, perceptions, beliefs, intentions, physiological make-up as well as the physical things they did when they spoke. What I’m saying is that almost a century ago, when people attempted to characterise stuttering and how to address it, they did the best they could at the time. But they got it wrong. And those misconceptions have been perpetuated to this day and accepted as truth. As a result, the first professors of speech pathology installed the paradigm of stuttering in their students. Some of those students became professors themselves. And they, in turn, passed along the same misconceived paradigm to their students. And so it went from generation to generation. By the way, this kind of thing has happened in other areas. I remember when it was a commonly held belief that peptic ulcers were caused by worry and an overly acidic stomach. Then in 1982, Dr Barry Marshall right here in Perth discovered that most peptic ulcers are actually caused by H piloroi bacteria and could be effectively treated by antibiotics. Until then, treatment of peptic ulcers was not very effective because doctors were looking at these ulcers through the wrong paradigm. That’s the same thing that happened with stuttering. Why didn’t anybody question the model of stuttering? First, the problem was very complex and therefore very elusive and hard to define. The contributing factors were all things that lurked beneath the surface. Secondly, the opportunities for self-discovery that exist today did not exist back in the 1940s and 1950s. Third, we in the West were not used to thinking holistically. Interdisciplinary studies were not very prevalent when I went to college. Every discipline fitted into its own separate pigeonhole. Finally, there was little likelihood that students would challenge accepted beliefs. For one thing, they didn’t have the background to do that, especially if they didn’t stutter themselves. Would you have challenged the information in your textbook? So the basic misconceptions of 80 years ago were passed along as the truth from one generation of teachers to the next. This made it extremely difficult for anybody to think outside the box. But things began to change due to several major developments. The first was the evolution of holistic thinking, thanks to ideas coming to the West from Asia and to the evolution of new computer technology. The second was the personal growth movement, which in the early 1960s was just then taking root in California. And the third, in the late 1980s, was the birth of the internet. I came to San Francisco from New York in 1961. It was one of the best things I ever did. Not only was northern California a Mecca for those seeking a different way of life, it was also the centre of the burgeoning technology industry in Silicon Valley. As an advertising copywriter, I was exposed to systems thinking as I turned out promotional material for technology companies on the San Francisco peninsula. I got to read the trade publications and, although a lot of it was over my head, I could usually pick up the gist of what they were saying. I saw how systems interacted and how and why computer intelligence was possible. I could see how, when you combined the right elements together, you could come out with something entirely new … something that was greater than the sum of the parts. The second major development, as I mentioned, was the personal growth movement that began in California just about the time I came west. Two years with a psychoanalyst didn’t do much for me but being a participant in self-discovery groups did. I got involved with them … not because of my speech, which was bearable … but because I was living on my own 3000 miles from home without a clear sense of who I was. I was suffering enormous separation anxieties because I was away from the people who defined me and I was unable at that time to define myself. And so, at the age of 26, I was feeling very desperate. I made some enlightening discoveries in those groups. I discovered that I was a very emotional person who long ago had buried his feelings. And that wasn’t all. I had a major self-assertion problem. I was afraid to speak my truth and say what I wanted. I was an approval junkie. I wanted everybody to like me and was devastated if somebody didn’t approve of what I did. I was overly impressed by authority. If I said "red" and somebody else said "blue", I would automatically assume that it was blue. I didn’t trust my intuition. I had little self-confidence and self-esteem. And I was a perfectionist who was constantly afraid of doing something wrong. In short, I was so busy pleasing others that somehow the real me got lost. As a by-product of three years of intense interaction with others in a group environment, I began to see that my blocking was not primarily a speech problem. Sure, my speech was involved but even though I had figured out what I was doing when I blocked that knowledge was only a small piece of the puzzle. My blocking mostly had to do with the difficulties I had with the experience of expressing myself to others. That’s what drove the speech blocks. I began to see that my stuttering was not a single problem but a constellation of problems in a dynamic relationship. It’s like this Lego car. I got this car at Toys R Us in San Francisco. But if you go into Toys R Us and look for this car, you know what? You won’t find it. You will not find this car. What you will find is a box of parts. It’s up to you to put the parts together in the right way to create the car. That’s what I discovered about the nature of speech blocks. It’s not just any one element by itself that creates the blocking behaviour. It’s how these elements go together. It’s about how they relate to one another. This is why researchers looking for the cause of stuttering haven’t been able to find the answer. There’s nothing exotic about the parts of the system. What’s exotic is in how the parts come together. So what are the parts?
Stuttering can be more accurately understood as a system involving the entire person — an interactive system that's comprised of at least six essential components: behaviours, emotions, perceptions, beliefs, intentions and physiological responses. This system can be visualised as a six-sided figure — in effect, a Stuttering Hexagon — with each point of the hexagon connected to and affecting all the other points. It is the moment-by-moment dynamic interaction of these six components that maintains the system’s homeostatic balance. You’ll understand this a little better when I tell you about the Hawthorne Effect. Anybody know what it is? For many years until the breakup of AT&T, Western Electric Company was the manufacturing arm for all the phone companies of the Bell System. In the 1920s, the Western Electric plant in Hawthorne, Illinois, employed a small army of over 29,000 men and women in the manufacture of telephones, central office equipment, and other forms of telephone apparatus. In the mid-1920s, the plant began a series of studies on the intangible factors in the work situation that affected the morale and efficiency of shop workers. They figured: "Hey, we make so many parts here that even if we can increase production 1 per cent, that can add up to big numbers. So let’s see if we can figure out how to improve worker output." In particular, the company wanted to know whether changing the lighting, break schedules and other workplace conditions would lead to higher production. One of the earliest experiments involved a group of six women from the coil-winding production line. These volunteers were pulled from the line and relocated into a smaller room where various elements such as lighting, room temperature and frequency of work breaks could be manipulated. The first experiment looked at whether changing the intensity of the lighting would have a positive impact on production. The experimenters started out with the same lighting intensity the workers were used to on the production line. They then increased the light a few candlepower. Production went up. Wow. Were they excited! They really had stumbled on something. So they increased the room light by another few candlepower. What do you think. Did production go up? You’re right. Production went up again. By now they were sure they were really onto something. So they continued to increase the room lighting a little bit more until the lighting in the room was several times the normal intensity. And each time they did, the production of the six women went up. At this point, the researchers were really pleased with themselves. But being good scientists, they felt they should validate their hypothesis that the lighting made a difference. So they brought the lighting back to the original starting point and dropped it by a few candlepower. What do you think happened? Production went up. So they dropped it even more. And once again production went up. They continued to reduce the lighting in the room until the women were working in the dimmest of light. And production continued to rise until the lighting was so dim that the women could barely see their work. At that point, their output leveled off. What do you think was going on? The researchers finally determined that it wasn’t the lighting or any other environmental factor that accounted for the increase in production. It was the development of a social system – something they weren’t even paying attention to. Before the experiment began, the women were just cogs on a production line. They lacked any sense of importance. They had few meaningful relationships with their co-workers. Their supervisor was seen as an adversary. They had little personal responsibility for turning out a quality product. Someone else set the standards and they just performed according to instructions. There was not much pride in what they did. In short, it was just a job. But all this changed when the six women were pulled from the production line and given their own private workspace. From the very beginning they were special and they loved the extra attention. Each of the women was not just an impersonal face on the production line. She was now a "somebody". Because the women were organised into a small group, it was easier to communicate with one another and friendships blossomed. The women began socialising after hours. They even began to visit each other at home. They joined together in recreational activities like picnics. The relationship with their boss also changed. Instead of being feared, he was now someone they could turn to. A group identification formed and with it came pride in what they did. The improvements that took place were primarily explained by the impact of the social system that formed and the ways in which it impacted the performance of each individual group member. The authors of the study concluded that: The work activities of this group, together with their satisfactions and dissatisfactions, had to be viewed as manifestations of a complex pattern of interrelations. In other words, it was changing the nature of the social system that mostly accounted for the change. Over time, this phenomenon came to be known as the Hawthorne Effect. The Hawthorne Effect goes a long way to explain what causes the blocking and struggling we label as "stuttering". The Hawthorne Effect also explains why stuttering therapy does or doesn’t work. And it explains why it’s hard to maintain your gains in the outside world. What I want to suggest is that when therapy does work, it’s not just the fluency techniques employed by the therapist that account for the improvement. Often, the speech therapy only plays a minor role. It’s the speech-related therapy plus the personal relationship between clinician and patient that leads to progress. In short, fluency is to a large degree a by-product of the Hawthorne Effect. In fact, once you adopt this explanation, you can explain just about any question that anyone has ever had about stuttering. Let’s set up a hypothetical situation. Let’s say that, as someone with a stuttering problem, you decide to work with a speech therapist. Let’s call him Sean. Sean has set up a two-week intensive programme for a half dozen clients and is holding it at a local hotel. You’ll not only attend the programme, you’ll also live at the hotel during that time … away from your familiar environment in a whole new world. In addition, let us say that Sean employs a fluency shaping approach, which involves hours and hours of practice. In the first week you will also learn a whole lot about how speech is produced so that you can visualise the process in your mind. The second week is then spent practicing the technique in real-world situations, such as on the telephone, on the street and in shops and restaurants. At the end of the first week, you begin to see real progress. You have now demystified your stuttering by learning what’s going on in your voice box when you block. And because of the electronic feedback, you can now distinguish the difference between tight and relaxed vocal folds, something you were not aware of before. All this is very helpful. But is that all that is going on? Hardly. There’s a lot more, and it relates to the Hawthorne Effect. Sean is an open and accepting person and as you interact with him you feel totally self-accepted, even during difficult speaking situations. Virtually every communication between you and Sean is designed not just to pass along information but to bolster your self-esteem. Every piece of negative feedback is accompanied by a positive statement that reinforces the idea that you’re okay. Sean really listens to all your concerns and he shows infinite patience in exploring the issues with you. Nothing you say is ever devalued. And that’s true in your relationship with all the others in the training as well. If you were in that situation, how would that affect you? Pretty obvious. You begin to trust. Your self-esteem builds. Your self-confidence grows. And you become more self-accepting. Now, in this environment, does it feel safer to express the real you? Well, sure it does. You feel acknowledged. You feel accepted. You feel validated. You’re no longer in crisis mode. All these positive changes begin to organise themselves into a self-reinforcing system that leads to letting go and, in many cases, to fluency which is a by-product of letting go. That is the Hawthorne Effect in action. So lo and behold, by the end of the two-week programme, your speech is easier and more fluent. And because, by this time, the system is self-supporting, your fluency continues … at least for a while … as you go back to your regular world. How many people have had the experience of coming out of speech therapy really speaking well? How long did it last for? Why did you slip back? Chances are, you didn’t slip back because you stopped practising the right techniques. A lot of people continue to practise proper technique and they still slip back. Why is that? The answer is, it wasn’t just proper technique that made you more fluent to begin with. Sure, that was important. But it was also your relationship with those around you. They were there to support you. You felt good. You felt okay about yourself. But what happened when you left the training? Was everyone in the world committed to supporting you in the same way? Uh-uh. In the real world, people were caught up in their own issues. They weren’t thinking about you. In fact, they may have actually put their needs before yours. Imagine that! How many here have had to fight for a parking place or deal with a rude bus driver or sales clerk? How’d that make you feel? Wasn’t it more risky to let go and speak and assert yourself in those situations? So what happens? If you’re not also working on the other parts of the stuttering hexagon … such as the way you think and feel … you end up reacting to these cues from other people and start losing your trust and self-confidence. Then one day you find yourself blocked. This triggers a downward spiral and eventually you’re back where you started. All this is due to the Hawthorne Effect that’s operating in the background. Over the years I’ve met many people who ended up relapsing after they had spent, in some cases, thousands and thousands of dollars in speech therapy programmes. Some of the stories I heard really upset me. I’m thinking of one very popular programme in the US that uses a fluency shaping approach. For years, people who went through this programme were told in no uncertain terms that stuttering did not involve emotions and therefore emotions would not be addressed. They were only going to work on mastering speech technique. That’s crazy! And yet there are many people – maybe most people – who still believe this. It’s not that the therapists in these programmes aren’t sharp. They are. It’s just that the model of stuttering that they grew up with … the model they were given in school and on which they base their therapy … is flawed. It’s the wrong paradigm. The concept of stuttering, as not a thing but a system, explains why stuttering is so hard to change. It’s not just your speech that has to change. It’s your entire self. This includes how you think. What you feel. What you believe. How you perceive. What your intentions are. What your self-image is. How you speak. All this is tightly organised into an interlocking, interactive system. It’s a living, self-perpetuating system that does everything it can to maintain itself. Try and change just one part of it and you push the system out of balance. To re-establish that balance, the rest of your stuttering hexagon will try and bring back your speech to the point it was at before you began therapy. THE DIFFERENT KINDS OF STUTTERING One aspect of the stuttering system that has through the years caused major problems has been the use of the word "stuttering". The ineffectiveness of this word to describe what’s really going on has caused all kinds of problems and has led to immense confusion and muddy thinking. Let me give you an example of how the sloppy use of language leads to problems. One of the most enduring lines of all time was spoken by Bill Clinton on TV when he said: "I did not have sex with that woman." Clinton took a very liberal interpretation of the word "sex". And it led to all kinds of interesting problems. How many of you have seen Oprah Winfrey? Oprah is the most successful and admired TV personality in the world and has enormous influence on millions of people in America. On one of her programmes, the subject was young, teenage girls who were having sex. There was this one 15-year-old who was going to parties and performing oral sex on some of her male classmates and this girl didn’t think there was anything wrong in it … something that was shocking to millions of viewers. When she was asked by Oprah whether she knew that young girls shouldn’t be doing this, you know what her response was? "That’s not sex." "What do you mean that’s not sex!" says Oprah. "Well," says the girl, "I know it’s not sex because the President of the United States says it wasn’t." That’s what happens when you don’t use language precisely. It leads to confusion. And it has consequences. The same thing happens with stuttering. What do you mean by "stuttering?" Are you talking about pathological disfluency? Developmental disfluency? Bobulating? Blocking? Stalling? Even though they may look alike at times, they’re all different. Each is driven by a different set of dynamics. For example, bobulating is kind of a relaxed, stumbly disfluency that you hear when people are upset, embarrassed, confused or discombobulated. The person is able to talk but their emotions are causing them to trip all over themselves. On the other hand, when a person blocks, they are, for the moment, unable to talk. They’re feeling helpless. That helplessness can lead to panic and embarrassment. They become self-conscious. It’s a totally different kind of experience even though it may look the same. When you call both of these stuttering … instead of bobulating and blocking … it forces you to make incorrect assumptions, just like the girl did on the Oprah show. An ineffective vocabulary is just one reason why this problem has not been clearly understood and in most cases, incorrectly characterised and addressed. WE NEED TO APPROACH THE PROBLEM DIFFERENTLY What does all this mean? It means we have to start approaching the problem of stuttering in a more all-inclusive way. If I hadn’t done that, I’d still be blocking. Practitioners in the field need to broaden their perspective. That’s tough, because there has been in the past … and I think still exists in most places … a prejudice among professionals against those who take a holistic approach. I’ve had many conversations with speech pathologists who have taken this approach and I’ve heard many of their sad tales. I have a speech therapist friend, Claudia Dunaway, at San Diego State University, who I met about seven years ago. She had read a paper that I had delivered in a workshop at an annual meeting of the American Speech-Language and Hearing Association. It turns out I was the first person from the stuttering community to confirm her own observations that this problem involved a lot more than just speech. She knew it did but nobody had ever validated it for her. So when she read my article about the Stuttering Hexagon, she was so excited she flew up to San Francisco and bought me dinner. And we talked into the wee hours. What’s interesting about Claudia is that when she was younger she was involved in the free-speech movement. Meaning what? Meaning that she spent several years exploring her feelings and her beliefs. She examined different lifestyles and her own life issues. She became very open minded and sensitive to who people were as people. She learned to look below the surface. Later on, she applied this knowledge and sensitivity and perspective to her clients very successfully when she became a speech therapist. But talk to Claudia and her associates at San Diego State and you hear about the closed minds they encounter at professional conferences. So many of the professionals just don’t want to deal with this holistic view of stuttering. If I have one bone to pick with the professional community, it’s that more of you don’t take advantage of the most important resource you have … the actual people who stutter … and especially, the most overlooked resource of all – those who have recovered. I mean, if you wanted to get to the top of Everest, where would you go for guidance? Would you only talk to people who have read books about climbing Everest or those who tried to climb it but haven’t yet succeeded? Or would you also chat with the 500 or so who have actually achieved the summit and ask them: "Hey guys, how did you do it? Tell me in detail what the problems were? What worked? What didn’t? What did you need to know? What was helpful? Who was helpful? What did you learn?" There are a hundred questions you could ask. But do researchers seek out recovered stutterers and ask those questions? As a member of the National Stuttering Association, I’ve been in contact with the professional community for over 27 years. How many researchers would you guess went out of their way to ask me how I recovered? The answer is … only two! Two people in 27 years. You saw at the beginning of this talk how, in trying to solve the puzzle using the wrong paradigm, you could have worked on it for a week with no success. From what I have seen and from my own recovery, I am convinced that the mysteries of chronic stuttering have eluded us for the same reason. All this time, the pieces to the puzzle have been sitting there right under our very noses. The answers are found by using a different model of stuttering that takes into account the many aspects of the individual – his emotions, perceptions, beliefs, intentions, physiological makeup and speech behaviours – and how all of these factors are woven together to create what we call chronic stuttering. If you professionals see us as partners, and not just patients, and if we in the stuttering community continue to play an active role by offering our own personal observations … and if we continue to share our thoughts and ideas and findings all over the internet … we will begin to see answers to a problem that has eluded us for over 5000 years. So what do you say? Are you ready to challenge your old beliefs? Are you ready to open your mind to new possibilities? Are you ready to make a paradigm shift? It’s been a real pleasure speaking with you today. For those seeking further information on his presentation, he suggested they visit his website at www.stutternomore.com or try www.stutteringhomepage.com jj EFFECTIVENESS OF RATIONAL EMOTIVE BEHAVIOUR THERAPY IN DEALING WITH STUTTERING (This is the full transcript of his speech.) There are people who stutter and yet lead their lives happily and function smoothly as members of society even though they stutter severely. On the other hand, there are people who stutter and yet are seriously troubled by the condition even though they stutter much less severely. It often happens that the latter group tries to hide their stuttering and avoid situations that involve speaking in public. Why are there differences? People who stutter are not simply troubled by their symptoms. How the person views his or her stuttering makes a big difference. The "Language Relation Figure" was proposed by an American, Wendell Johnson, a well-known speech language pathologist. About 50 years ago, he proposed that stuttering is not only a matter of symptoms, and that the condition needs to be examined in more detail. He put forward the problem in a language diagram as a method to understand it in a visual context. (A cube was shown, with an X, Y and Z axis.) The X axis represents a characteristic of spoken language, the Y axis is the reaction of listeners and the Z axis is the speaker’s manner. Each axial length, the volume and form of a completed box with the XYZ axis expresses the seriousness of the stuttering problem. The X axis is characteristic of spoken language and it becomes long when stuttering symptoms are severe. The Y axis is the reaction of the listener. When listeners warmly receive the speaker, uneasiness and fear of stuttering decreases and the Y axis shortens. The Z axis (representing the manner of a speaker) becomes long when people who stutter hide their stuttering and avoid the situation. In other words, even though symptoms of stuttering might be severe, if the person who stutters accepts their condition and has good listeners who understand stuttering well, the actual stuttering problem is small. On the other hand, if others around the person who stutters hardly notice the stuttering (i.e. the person who stutters has a short X axis) but the person sho stutters is extremely troubled with their stuttering, their Z axis becomes long and their stuttering is, of course, a problem. Let us take a look at the Z axis. As I first mentioned, certain people who stutter go to great lengths to hide their condition and are very much negatively influenced by it while, on the other hand, there are people who stutter openly without letting the condition affect them in any way. This means there are two kinds of people who stutter: Those who live life to the fullest and those who let it get them down. If we can shorten the Z axis (the speaker’s manner), it is possible to live a much fuller life, even if the X axis does not change. In other words, the symptoms remain the same. After all, to reduce worry and to live with stuttering is much more important than to reduce its symptoms. So, Rational Emotive Behaviour Therapy (REBT) is a very effective method to shorten the Z axis. The basics of REBT are known as the ABCDE Theory. A is the activating event. This is a start of an unpleasant event that activates our sufferings. C represents the consequences of an event. This is feelings or actions as a result of the event. The same activating event does not always produce the same consequence. Consequences may completely differ from person to person. Generally speaking, people tend to think that the activating event itself produces troublesome consequences. But troublesome consequences come about by the way one receives or interprets the original activating event. The REBT model adds in B, the Belief System, between Activating Events and Consequences. B represents the way of receiving, the way of analysing of, or the way in which we interpret the event. In other words, B is the little voice in our minds, or self-talk. This belief system matches the Z axis of Johnson’s Language Relation Figure model. The Belief system incorporates two beliefs. One is rational belief and another is irrational belief. Rational belief is theoretically belief on the basis of the fact and belief that has logical inevitability. Rational belief allows us to feel happy in our everyday lives. Therefore, if you feel pain by holding one belief, even if the belief is correct, it is not rational belief. The second one is irrational belief. Irrational belief is belief that doesn’t stand on the basis of the fact and belief that doesn’t have logical inevitability. By holding this belief, you harbour inappropriate feelings and harmful emotions; for example, strong anxiety and rage, depression, dysfunctional behaviours and so on. REBT focuses on irrational beliefs, especially beliefs that contain "musts". Let us reconfirm: Activating events do not produce consequences. One’s belief system produces consequences. Even if there is no change in activating events, if you change your belief system the consequences will naturally change. This is the main point of REBT. D is Dispute. D points out irrational ideas and appropriately revises them. E is Effect. After disputing irrational belief, irrational belief turns into an effective philosophy of life. Inappropriate feelings and behaviour become appropriate feelings and behaviours. A REBT example is: "When I announced at the conference to the clients, I stuttered badly. My boss scolded me: ‘The content of your presentation is not bad, but it is bad that you stuttered so much. You have brought shame upon our company.’ Also, all the attendees of the conference laughed at me. Finally, I was awfully depressed and was unable to work." Activating Event: When I presented at the conference, I stuttered badly. My boss scolded me. Consequence: I was awfully depressed and was unable to work. As in the example above, if a person is too depressed to work, even if they go to the office, they will be unable to work as usual because they are anxious about how the boss and clients think about them. However, if they think "It is indeed true that I stuttered awfully in the last conference but I’m okay and should work as usual", they will be fine and be able to work in a normal manner. REBT deals with various feelings such as strong anxiety, rage, depression and dysfunctional behaviour. If we can adjust our belief system, the result is that we are more comfortable with ourselves. If one has a more flexible belief system, consequence will change from depression to disappointed and in the end lead to relaxation and possibly success in a later event. "Disappointed" in itself is a small negative feeling. But when I feel disappointed, I will try harder or I will try something "positive" next time, as I’m not satisfied with the result. Therefore, "disappointed" is an appropriate feeling. Characteristics of irrational beliefs:
(This presentation is on the JSP website at www.bekkoame.ne.jp/i/chioald/ ) kk THE NATURE AND IMPACT OF TEASING OF ADOLESCENTS WHO STUTTER: PERSONAL EXPERIENCES Susan Block said a paper given by Deborah Cully (of the Institute for Stuttering Treatment and Research at Edmonton, Canada) at the Australian Speak Easy Association’s convention in Terrigal, north of Sydney, in 2000 was the spark for this research (undertaken with P Cullen, a speech pathologist at Bendigo Health, Victoria). Deborah Cully’s study found one child in six was bullied weekly. That means in a class of 30 children, five would be bullied. Verbal teasing happened most often. Physical teasing happened not so often. It found 40 per cent of boys and 25 per cent of girls don’t report bullying. So the figures reported are much lower than occur. The reasons for their reluctance to report bullying were:
A total of 78 questionnaires were distributed but only 16 were returned. That was a 21 per cent response rate. Of the 16 who replied, 13 were male and three were female. They were ranged from 11 to 19 years, with the mean age for both males and females being 14.3 years. Of the 16 who took part in the study, 14 reported they had been teased about their stuttering. Of the two who did not report teasing, one had begun to stutter at age 13 and the stuttering was "very mild", while the other had only stuttered for one year. Of the 14 who had been teased, 10 said they had been teased at primary school. Of the 10:
The study found 55 per cent of the adolescents in the study had been teased at secondary school. Of those:
A total of 37.5 per cent reported being teased outside of school – by parents, siblings, friends and relatives. A total of 40 per cent reported difficulties in making friends at primary school. Most attributed it to their stuttering. At secondary school, 50 per cent reported these difficulties. Participants’ comments on the teasing they had endured included:
ll INDIVIDUAL DIFFERENCES IN WORD RETRIEVAL FUNCTION AND COMPENSATION IN STUTTERING: DO THEY CORRELATE WITH FUNCTIONAL BRAIN ACTIVATION MEASURES? Charn Nang said the cause of stuttering was unknown but it was believed to be a disorder of speech production. In her study for her honours degree, she asked: Do individuals who stutter show one or more deficits at one or more levels of word retrieval processes? She said she used a speech production model that began with conceptualisation, leading to formulation then speech execution. Word retrieval processes began with semantic activation, leading to phonological encoding, phonetic encoding then execution. Then she outlined her research methods. She used Functional Magnetic Resonance Imaging (fMRI), which measures regional changes of oxygen in blood. She said it was difficult to interpret the results in her study. Aims for further research might include:
In summary, she concluded:
Tanya Klugman, of the University of Witwatersrand, Johannesburg Tanya Klugman noted the amount of multilingualism around the world. South Africa, a country with many languages, has a strong multilingual heritage. Stuttering affects between 0.7 per cent and 1 per cent of the population. Many who stutter are likely to be bilingual. When two multilingual South Africans are speaking together, it is not unusual for a speaker to switch language in mid-sentence, she said. This is known as "code-switching". She said some studies have shown that code-switching may increase the incidence of stuttering and that other studies have shown that code switching may decrease the incidence of stuttering. At the University of Witwatersrand, Johannesburg, she, J Bowker and N Watt conducted research that aimed to determine the relationship between fluency and the unique bilingual modes and code-switching that is available to bilingual people who stutter. A multiple case study was conducted in which four bilingual English-Afrikaans participants (two participants who stuttered and two fluent participants) took part in six speaking situations that varied across language, mode and formality. Subjective perceptions of the relationships between language, code-switching and speech fluency were obtained in interviews. The finding reflected the contribution of language proficiency and language use to fluency levels in situations of different languages and formality. The results supported the "difference hypothesis" regarding bilingual stuttering and emphasised the contribution of the bilingual mode to this hypothesis. The limitations in applying a monolingual pattern of speech measures to bilingual clients were highlighted in the study. Tanya Klugman said the implication was that speech pathologists should target therapy in all languages that a client spoke – not just in the one language. nn A MULTINATIONAL INVESTIGATION OF STUTTERING INTERVENTION Professor David Shapiro said the study the three presenters were involved in was sparked at an International Fluency Association conference in Nyborg, Denmark, in 2000. It aimed to determine the assumptions, methods and lessons learnt and the purposes served by clinicians who treat people who stutter and to make comparisons within and across countries and cultures. An open-ended survey was given to 25 clinicians each in 14 countries around the world. The results were presented at last year’s IFA conference in Montreal. They showed a commonality of purpose among multinational service providers, the importance of working together and communicating across international borders, and a window into the world as a global classroom. Peter Dhu and Professor Peggy Wahlhaus outlined the results from Western Australia and South Africa respectively. Prof Shapiro said the survey revealed commonalities between speech pathologists. These were:
oo THE SELF-HELP MOVEMENT: THE AMERICAN EXPERIENCE What do self-help groups do?
What’s a concern? Pitfalls. (Money.) What can help make chapters successful? Preparation, Problems (why do some people leave after a meeting or two?) and Practice (dealing with needs, such as avoidances). What’s new (besides the really good new website)? Parents. (Chapters for teens and parents and speech-language therapists.) Thomas Krall said there are 60 million people who stutter in the world. From time immemorial, they have often been misjudged as fools, psychopaths or figures of ridicule in our society. Literature, film, newspapers and television repeatedly take up and even intensify these wrong, one-sided and distorted pictures. Self-help groups sprung up around the world from the 1960s. That led to the forming of the International Stuttering Association in 1995. It has 44 member associations. It is run by people who stutter for people who stutter. It is dedicated to close co-operation between the self-help organisations. He outlined the history of the ISA and spoke about highlights over the last nine years of its existence. qq THE SELF-HELP MOVEMENT: OUTREACH Stefan Hoffmann said being in Perth had a special significance. When he was young, he stuttered. He looked for a place far away from Germany that he could go to escape from his miserable life. He settled on New Zealand. He believed by escaping to New Zealand his stuttering would be "cured". Perth was the closest he had been to New Zealand. He said he was fascinated with everything to do with foreign countries. Since February 1998, he had been involved in the International Stuttering Association. He had served on the ISA board but stepped down in Perth. "Outreach" is the key word, he said. Most of the countries that belong to the ISA are in the so-called western world. In Europe, more northern countries than southern countries are involved in the ISA. For example, Portugal and Greece don’t yet have support groups. He has been working in Beijing and learnt first hand an example of the situation in developing countries. He outlined what he had done in China to set up self-help groups in Shanghai and elsewhere. In 2001, he was approached by China TV to find out whether he wanted to do a live programme. He agreed but was worried about appearing live. It proved successful. He said if e-mail had not been invented then the outreach programme would not have been possible. rr THE SELF-HELP MOVEMENT: FUTURE DIRECTIONS What is changing?
Dr Irwin introduced the other five ISA board members present in Perth: Warren Brown (New Zealand), Judith Eckardt (United States), Masuhiko Kawasaki (Japan), Joseph Lukong (Cameroon) and John Steggles (Australia). Anita Blom, from Sweden, said: "Some people here touched a string in my mind, other people touched a string in my heart (you know who you are). The music that you created inside of me asked for words to be accompanied by and here they are: I loved mornings Mornings meant a start of a new day, a new life Another day of laughing and playing Being loved and supported By family and pre-school teachers With lots of friends and people supporting me Anxiously waiting for a new day to come At the age of 10 I loved afternoons Afternoons meant coming home from school After a day of teasing and bullying, fear and humiliation Being ridiculed and put down By family and teachers With hardly any friends or support Anxiously fearing the new day to come At the age of 20 I loved nights Nights meant not to be seen, not to be heard Another night of crying and anxiety over the new day Being totally ignored and unloved By family and even myself With no friends or support whatsoever Anxiously hoping for the new day never to arrive At the age of 30 I once again loved mornings Mornings meant a new beginning, a new period of growth New mornings of hope and baby steps Trying to be myself and acknowledge my feelings Being accepted by family and colleagues supporting me on my new path With new friends who stutter, support and understand Anxiously looking forward to a new day to come At the age of … well … now I once again love afternoons Afternoons mean looking back on a day of wider comfort zones and new challenges New afternoons of faith in the future and in myself Remembering how to live, love, laugh and dream again Being loved, appreciated and even challenged By family and colleges With friends and support groups from all over the world Anxiously waiting for the future to come At the age of 50 I want to look back at those mornings, afternoon and nights Mornings of being lost, afternoons of being found and nights of being reborn Days full of love, life and self-esteem To now GIVE love, life and self-esteem To family and colleagues And to now GIVE support to friends all over the world Anxiously waiting for the next generation to pass it on to My wish for you is To look forward to mornings With hope for the new day to come To look forward to afternoons And see the progress you made To look forward to nights And feel good about who you are, no matter what With love from your family Acceptance from your colleagues And support from your friends and fellow stutterers Anxiously waiting to help other people who stutter to believe in themselves And to become the beautiful and powerful person YOU are today." Then John Steggles, president of the Australian Speak Easy Association, and Peter Dhu, chair of the congress organising committee, closed the congress. It was announced that the next Australian Speak Easy Association convention would be held in Queensland in 2006. The world congress dinner was held that evening at the Fremantle Sailing Club.
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