Last Update: 26 Nov 2005

ISA Board info

Nov 14, 2005

Stuttering as a Disability –the controversy.
By Mark Irwin - ISA Board Chair *

“Dr. Mark Irwin is the Board Chair of the International Stuttering Association, the umbrella organization for national stuttering self-help and support groups from throughout the world. He has also previously served as President of the Australian Speak Easy Association and continues as a member of its national council. He is a dentist in private practice in Adelaide, Australia.”

Stuttering is a legally defined disability in many countries of the world. Even so to call stuttering a disability can provoke a strong negative reaction in both SLP’s and people who stutter (PWS). Why would this be so?

Objections to describing stuttering as a disability involve one or more of the following arguments:
1. Disability is not the right word.
2. Some people who stutter do not choose/want to see themselves as disabled.
3. The label disability encourages the victim mentality.
The International Stuttering Association, the umbrella organization for national self –help and support groups throughout the world, recently debated this question, confirming its recognition of stuttering as a disability. The rationale for this decision follows:

1. Is disability the right word?
This issue relates to the episodic nature of stuttering, its situational specificity, differences in how its life impact is perceived by sufferers, as well to the fact it can be ameliorated by therapy. Consideration of this leads to the question is there another word that better describes stuttering? Traditionally there have been two other words associated with disability –impairment and handicap. The distinction between them has been described by American SLP’s Scott Yarus and Bob Quesal, among others, in the following manner: Impairment refers to the stuttered speech patterns, disability describes the communication difficulties, and handicap describes the impact the communication difficulties have on achieving life goals.
With stuttering, of course, the extent of the communication difficulty can be more than just the observable speech. The communication difficulty is also affected by the speaker’s anticipation of, and/or reaction to, the stuttering behaviour. So disability can still exist inspite of only a minor observable impairment and minimal handicap. However these distinctions are obviously subtle and confusing. The same issue affects accurate descriptions of many other disorders besides stuttering. In 2001 the World Health Organization responded to this by reevaluating its previous International Classification of Impairments, Disabilities, and Handicaps, in favour of a new framework known as the International Classification of Functioning, Disability and Health. Without going into a full description of the impact of this change, (see Yarus and Quesal, Journal of Communication Disorders 37, 2004 ) ,one obvious implication as seen by the change in title, is that the words impairment and handicap have been devalued leaving disability as the general descriptor.
In addition to this it is necessary to consider the use of the word disability when applied to what is known as the “disability movement”. This movement is becoming very powerful as previously disadvantaged members of society seek attitudinal and legislative change. There is no question that some pws have been disadvantaged by their stuttering, (eg unable to obtain a job because of an inability to speak well under the stress of an interview), and need these matters to be brought to the attention of authorities. Again disability is the right word to describe stuttering if stuttering is to be supported by the disability movement.


2. Some pws do not choose/want to see themselves as disabled.
Canadian SLP Ann Meltzer reported a survey in which she asked pws to comment on this question “Is stuttering a disability.” The majority responded negatively to this statement. As a result she argued that “whether a person is disabled by stuttering or wants to be recognized as having a disability/ being disabled, is an individual choice.”
A response to this statement leads to a debate on the semantics of the previously discussed impairment, disability, handicap definitions. It could also be argued that the same people who are not happy to see themselves as having a disability are also not happy about seeing themselves as people who stutter. In other words there is a lot of shame, embarrassment and denial for pws. Dealing with this is the major role of self help groups, and of course is regarded by many as a foundation stone for successful therapy. As expressed on related matters by popular TV psychologist Dr. Phil McGraw, “you can’t change what you don’t acknowledge.”

3. Labelling stuttering a disability may encourage a victim mentality.
This of course relates to the issue discussed above. But it goes further. That is because pws have a legally defined disability they may be entitled to concessions that encourage them to stay disfluent. They may also fall into the trap of using their stuttering to receive sympathy and support they feel they would not otherwise get. In other words there is a disincentive for pws to seek therapy or respond positively to it.
Most commentators would agree this is a possibility, but this position also assumes therapy could be effective for everyone who stutters. Clearly this is not the case. Many pws have had years of therapy and still remain relatively disfluent. Another question raised here is “just how hard should one have to try to become fluent?” An analogy is to expect everyone who joins a golf club to keep on practicing until they can play like Tiger Woods. This is obviously an unrealistic position. Some may have the talent, capability and luck as well as access to the right coach to do very well, but most of these golfers are going to remain players of modest skill.
Indeed this raises another question, : “What expectations should therapists have of their clients?” The ISA has also looked at this question and ratified a Bill of Rights and Responsibilities for People Who Stutter. The general concept is one of individual rights for the person who stutters. In other words some may choose to live with their stuttering while others may work at overcoming it –the path is for each individual to decide. But with either path the word disability remains. Stuttering can be seen as a disability to be lived with, or as a disability to be overcome.

 

Oct 27, 2005

AFRICAN CONFERENCE and
 INTERNATIONAL SPEECH PROJECT
 Report by Mark Irwin (ISA Board Chair) October 27, 2005

History:
In February 2004 at the World Congress of PWS held in Perth Australia, David Shapiro and Peggy Wahlhaus discussed with me their idea of collaboration with the ISA to develop a program for bringing stuttering therapy to the developing world. A model for this initiative was the internationally recognized “Medicines Sans Frontieres” (Doctors Without Borders). Stefan Hoffman as ISA Outreach Committee chair was later involved in these discussions and it was decided to pursue this idea further.

There was a meeting in Perth and later group email discussions where it was decided to name the program –International Speech Project –Stuttering.(ISP-S). The rationale was if funding was to be secured and recognition achieved then the project had to have a broader appeal than simply stuttering therapy. It was decided it would be more likely to be favorably received by potential donors if the program related to provision of general speech therapy services.

Once this decision was made other issues were its structure and where and how to launch the project. Stefan Hoffman, Moussa Dao, Joseph Lukong and I collaborated to initiate an inaugural African Stuttering Conference in Douala Cameroon from 6th-8th October 2005, thinking that this conference would provide an opportunity to gain insights into needs and fund raising possibilities. This background information would enable effective future planning and make Douala the obvious place to launch ISP –S.

Attendees
From inside Africa there were delegates from 14 different African countries. Of course the main group came from Cameroon.
From outside Africa the conference was supported by speech pathologists Anne-Marie Simon from France, experienced in work in Africa, two of her colleagues Sylvie Brignone and Cecile Couvignou, as well as David Shapiro (USA) and Suzanna Rosenberger (Germany). In addition psychologist Peter Howell (England), geneticist Radha Upphala (India) and teacher Isobel Quick (Australia) also made conference presentations.

Promotion
Anne Marie Simon was a key person in promotion of the event throughout Africa. She had many contacts as a result of previous work there. In addition others heard of it through her interviews on Radio France Internationale. Joseph Lukong liaised with me to produce a conference brochure and later worked tirelessly communicating via email with potential delegates from all over Africa, as well as creating media awareness in Cameroon.

Finance
The ISA took up the challenge to financially manage the event. It sought funds from recognized aid agencies, embassies and churches without success but was successful in obtaining private donations directly and through affiliated member associations. Originally it was hoped that fund raising could be arranged to fully support travel, accommodation and meals for one delegate from each African country. In the end budgetary constraints meant we could only offer 50% air fare while fully supporting accommodation and meals. Delegates from 21 African countries were involved in discussions about attendance. Of these, delegates from 14 countries attended. Distribution of scholarship money raised by the ISA was managed in Douala by myself, Joseph Lukong and Moussa Dao, after telephone and email links to ISA treasurer Hermann Christmann of Denmark.

Aims of Conference
• Give information about stuttering.
• Give stuttering therapy.
• Give information about development of self-help groups
• Gain information about situation for pws in Africa
• Gain information about situation for therapists in Africa
• Gain information for fund raising possibilities
• Launch International Speech Project -Stuttering



Information Given
• Information was given to delegates via conference presentations by all the speech pathologists and by psychologist Peter Howell, geneticist Radha Upphala and teacher Isobel Quick. The general public was informed through numerous radio and television interviews. Credit must go to Joseph Lukong for publicizing the event so widely in Douala and ensuring such widespread media coverage.
(Anytime I was interviewed, including a segment on the 7.00 TV news, my message was for the general public to understand stuttering is a disability that can be managed to varying levels depending on age, severity and support. The message for pws was to come out, not to be anxious, embarrassed or ashamed of their stuttering and join a support group as a means of helping themselves.
• Stuttering therapy was provided to the delegates in preconference work shops conducted by Anne Marie Simon and David Shapiro
• I gave a presentation on stuttering self-help groups –how to make them work to ensure they remain dynamic and open.


Information gained
• Generally the situation in Africa for pws is poor due to a lack of understanding and use of ineffective and physically harmful treatment techniques. Examples included a report from Salad from Kenya on how he was beaten vigorously on the back with a sheep’s lung as a treatment method. Joseph Nsubuga from Uganda reported incidents where children who stuttered had been killed in the belief they were possessed by evil spirits.
• Belief in witchcraft is still prominent in Africa and the local witchdoctor/ faith healer is used as a therapy source. Western style therapy exists to varying extents. Recognized speech therapy qualifications are available in South Africa and Togo. The Togo training institution has received funding from Handicap International and students receive specialist training in stuttering therapy from Anne Marie Simon. Other people have done what can best be described as auxillary training either in France or in South Africa. Elsewhere psychologists treat stuttering. Sami Yasin from Sudan reported that speech therapists are unknown in his country.
• There are many international aid organizations, churches and embassies providing assistance in Africa. Unfortunately none of those approached by the ISA or by the Clear Speech Association of Cameroon were able to help.

Launch of International Speech Project –Stuttering
After consideration of input from numerous sources the ISP –S was launched with a general concept of developing self-help groups to liaise with specialist speech pathologists to provide information to pws and the general public. In addition the specialist SLP’s would provide postgraduate education to African “speech pathologists” and psychologists. Another priority was to lobby African governments to provide training for French and English speaking students in the established facilities in Togo and South Africa respectively. Later perhaps, when enough speech therapists in various African countries had been trained it might be possible to develop local education facilities staffed by people previously trained in Togo or South Africa. A development board will be established to manage practical implementation of these ideas.

Summary
The delegates indicated that they very much valued the opportunity to build networks with other pws and experts from within their own countries, from Africa, and from other countries in the world. Judging by the number of contact details exchanged this will be only the start of the ongoing development of a supportive network of people with a commitment to improving the situation for pws in Africa.
Expert information was shared in a two way process and knowledge deepened. From this we can expect the development of more self-help groups in Africa plus the provision of more effective therapy and training services. In addition a foundation has been set for ISP-S so that essential information and effective stuttering therapy might soon be bought to all people of the developing world.
Thanks are due to everyone involved in this historic event. A huge splash was made in the pond of stuttering awareness and understanding. The ripple effect from this splash will further develop the ISA mission of a world that understands stuttering.
Finally as a visitor to Africa I found the hospitality shown by the local delegates to be outstanding, and would encourage others to participate in any future conferences.
 

Photos from the African conference may be seen on Photo Gallery.

Jul 17, 2004

2004 World Congress for People Who Stutter

Fluency and Beyond: A Holistic Look at Stuttering
Hosted by the Australian Speak Easy Association
Perth, Australia
Peter Dhu, Congress Convenor
February 15-20, 2004

Over 350 delegates attended the 2004 World Congress at the Esplanade Hotel in Fremantle, Western Australia.  Of the people who registered there were 100 International delegates from 26 Nations, over 100 from the state of  Western Australia, and an additional 100 from the other states of Australia. Many of these delegates were able to attend through scholarships offered by the ASEA and the ISA.

The Congress Programme Committee invited speakers from many nations to represent the wide cross section of treatment philosophies throughout the world. The programme was extremely comprehensive and offered  many plenary sessions and workshops.   These workshops and sessions were often led by People Who Stutter and were in the theme of a “holistic look at stuttering”  In addition, social functions included a welcoming party by the Esplanade Hotel Pool and a closing function over the water at the Fremantle Sailing Club. To acquaint the delegates with Western Australia, tours were offered before and after the Congress.

Two sentiments expressed by delegates, which represented the views of many, were : “I came just looking for fluency but will leave with so much more.” AND  “Even though I was in a foreign country I felt at home.”

A special thanks goes to Peter Dhu and his planning committee for all their work in the past four years to make the 2004 Congress a great success. Also, many thanks to West Australian Speak Easy who was able to raise $25,000 through sausage sizzles, raffles, chocolate drives, Entertainment Book sales, BBQ’s etc. to help with the expenses of the Congress and to supply scholarship money. Finally, many thanks to Dr. Mark Irwin, Chairman of ISA for his work as Chair of the Programme Committee.

Jan 30, 2002

Open Letter:
Negative fedback on Harry Potter movie

We are presenting here an OPEN LETTER obtained from Annie Bradberry - ISA secretarry and refined by Mark Irwin - ISA chair on Harry Potter movie.
ISA member associations are kindly requested to alter it as required and send it on their letterhead to as many newspapers in their country as possible. (through their regional groups?)

To editor of …………………. Newspaper

I wish to draw to your attention negative feedback our association has received from parents and children who have seen the current movie "Harry Potter and the Sorcerer's Stone". Accordingly I wish the following letter to be published in your newspaper.

Further information can be obtained from the International Stuttering Association through its spokes person Jaan Pill of Canada () and web site http:stutterISA.org

OPEN LETTER to J.K. Rowling (Author of Harry Potter stories)

Dear Ms Rowling;

The Harry Potter books, and now the first Harry Potter movie, are enchanting millions of children. Children who stutter, however, are coming away from the movie hurt, humiliated and angry because of the portrayal of the stuttering Professor Quirrell.

Professor Quirrell is a weak character whose stutter marks him as ineffectual, insecure and harmless. It's the oldest stereotype around and it's completely false. It's particularly disappointing to see an otherwise imaginative work as "Harry Potter and the Sorcerer's Stone" cut corners with this hackneyed formula.

Stuttering is not an emotional problem or nervous disorder. Current research suggests a connection between stuttering and neurological coordination of the speech mechanism. For children struggling to come to terms with their stuttering, this common misunderstanding -- that stuttering is a symptom of emotional problems or weakness of character -- is a source of daily frustration.

Harry Potter is not the first book or movie to portray people who stutter negatively, of course. Most adults who stutter have developed a thick skin about this kind of prejudice, but children are especially vulnerable. The presence of this hurtful stereotype in a popular movie means that children who stutter will be teased by kids and misunderstood by adults more than ever. The National Stuttering Association began getting calls from parents shortly after the Harry Potter movie was released and we expect many more as the movie runs its course.

I am sure you did not intend to hurt children who stutter when you wrote the book. But wouldn't it have been great if the power of this magical story had been used to promote understanding of kids who are different instead of perpetuating a false stereotype? We hope you will consider using stuttering in a future Harry Potter book to make one of your characters more interesting and realistic.

Sincerely,

Signature
Insert Name
(On behalf of (insert your organization's name) and the International Stuttering Association)

Nov 16, 2001

Three new ISA member associations

We are pleased to inform you that three new ISA member associations have been accepted for membership in ISA:

1. SCAC,  Speak Clear Association of  Cameroon.

2. TMM-L,  a Spanish-language online self-help group for people who stutter.

3. Passing Twice, a network of gay, lesbian, bisexual and transgender stutterers and their friends.

The contact information of the new members will be published on ISA members page shortly.

Nov 16, 2001

Article about ISA

Among the articles published on the ISAD online conference on October 1 to 22, 2001 was an article about ISA, its history, web site and more. To read it click Article about ISA . The annual online conference is organized by Judy Kuster on the Stuttering Home Page

Nov 16, 2001

Translation service

For your interest, there is a free translation service on the Internet. To use it click: Translation service

The translation is not perfect. But undoubtedly it is better then nothing. There is a possibility to translate between English and French, English and Spanish, English and German, English and Japanese and more.

Sep 09, 2001

Special Friends group.

I have the great pleasure to inform you that the ISA Board of Directors agreed to add new members to the Special Friends Group, which helps keeping contacts in countries where there is no ISA member Association for Stuttering People.

Present members were:

• Jiri MAZOCH (Czech R.)

• Tomas SIMKO (Slovakia)

• Moonja SHIN (South Korea)

• Benabdellah DAHO (Algeria)

• Daniela V. ZACKIEWICZ (Brazil)

• LI Shengli (China)

Let’s welcome the following new members:

• CHEN Chao (China, PWS, translated "Sometimes I just stutter", will help edit website)

• Barry MA (China, PWS, went to the Ghent Congress, website support in China)

• XIAO Kewei (China, ex PWS, psychiologist, runs stuttering clinic in Shenyang, open to Self help concept)

• JIN Xingming (CHina, pediatrist, she went to the Ghent Congress, open to self help concept, runs parent's group in Shanghai)

• Pedro RODRIGUEZ (Venezuela, PWS and SLP, went to the GHent Congress, runs online Latin American SHG)

• Carlos A PIMENTEL Ferrari (Peru, PWS, went to the Ghent Congress and to German Conference 2000)

They all will be close to ISA developments and receive the newsletter OV for free. They have the right to publish articles in OV and ISA web site about their country and have access to the worldwide contact network about stuttering.

It is ISA's hope that they will gradually work to establish Self-Help groups in their areas or continue running them in case they exist. They are of course especially invited to attend the World Congress in 2004 in Perth, Australia.

Of course, among the Special Friends, it might be very fruitful to share experiences, as in most countries we face the same challenges.

I will work as a mediator, so when you have questions, please write to me.

Best from China

Stefan Hoffmann - ISA Vice Chair

Sep 04, 2001

CHAIRMAN'S MESSAGE No. 1

Meeting the needs of people who stutter is the mission of the ISA as we work towards a vision of a world that understands stuttering.

The ISA is the umbrella organization for national and international self help groups for people who stutter. It seeks to strengthen the self help movement and to represent all people who stutter.

The ISA message is that stuttering is not shameful and need not be hidden. Many therapies are available which address the issues of negative emotional responses and/or poor speech behavior.

General Plans of the ISA are to:

• Outreach to people throughout the world

• Maintain a web site

• Publish a biannual newsletter (One Voice)

• Develop positive relationships with Speech Pathology profession.

• Achieve recognition from World Health Organization

• Raise funds for scholarships for attendance at World Congresses for people who stutter.

• Support International Stuttering Awareness Day

Specific Plans of the ISA are to:

• Hold an International Year of the Child who stutters in 2004

• Develop a CD Rom with information for children who stutter , their parents, teachers and fluent classmates.

• Influence governments and educational institutions to ensure the CD Rom is distributed as effectively as possible.

• Support the 2004 World Congress of People Who Stutter ( to be held in Perth Australia.)

I am delighted to be working with a talented, committed and experienced board. I believe we will work well with national associations on projects which will make a real difference to lives of people who stutter.

Mark Irwin - ISA chair