Internationellt samarbete

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Internationellt samarbete: ISA

Se även ISA's hemsida där du kan hitta mer intressant om ISA, kongresser i världen, ISA:s nya logo, nya medlemsförbund från Afrika och annat intressant, ta en titt på

Övriga internationella inbjudningar:

28/9-1/10 2005 blev jag inbjuden att tala på en stor 4-dagars l logopedkongress i Dubrovnik, Kroatien. Jag var ombedd att ge en presentation över den lokala, nationella och internationella stamningsrörelsen och en workshop om stamning, eftersom stamning behöver lyftas fram i Kroatien för att väcka intresse för världskongressen eftersom Kroatien är värdlandet för nästa världskongress 6-10 maj 2007. (ELSA hoppas kunna anordna ett europeiskt ungdomsläger där samtidigt.) Det kom inte bara kring 250 logopeder från enbart Kroatien utan även från kringliggande länder och till och med en från Kuwait! Det blev en upplevelse med många nya erfarenheter. För mig är det alltid en konstig känsla att höra alla föreläsare prata om “stamningsfall” och inse att de pratar om mig och andra som stammar. För dem var det en upplevelse att nu för en gångs skull höra en person som stammar berätta om hur det är att stamma, att få höra hur viktigt det är med föreningar och vilken skatt av information personer som stammar har att erbjuda. Att de behöver oss lika mycket som vi behöver dem. Det blev många frågor även efter föreläsningen och jag hoppas det leder till mer öppenhet kring stamning.

Tjeckien anordnar varje år ett evenemang kring den internationella stamningsdagen. I år (2005) har jag fått den äran att vara "keynote speaker" för att tala om det europeiska samarbetet och stamning. Än så länge finns ingen stamningsförening, varken i Tjeckien eller i angränsande länder, så jag hoppas kunna ge lite stöd och inspiration. Jag var inbjuden till kliniken LOGO i Brno, Tjeckien och blev mycket imponerad av kliniken, som även firade sitt 30-års jubileum. En engagerad människas vision har lett till den ultima behandlingen för en person med talsvårigheter! Tänk dig ett ställe där man får hjälp av en logoped, en psykolog, en neurolog, en tränare och många andra som alla jobbar med just dig och behandlar inte bara talet, men även kroppen och hjärnan. Och inte nog med det: de har ett mini SPA med massage, bubbelbad, avslappningsrum (med syrgas och rörliga bilder”), pool och skönhetsbehandlingar. Du kan antingen komma för en behandling eller vara intern. För barn har de ett speciellt dagis för barn med talsvårigheter där de blandar lek med terapi. Tänk om vi kunde få ett sådant ställe i Sverige där hela människan behandlas samtidigt och där resultaten verkligen bevisar att helhetssynen fungerar.

Sidan upp

Internationellt samarbete: IFA

IFA har sin världskongress i Dublin, Irland, 24-28 juli 2006. Mer om detta på deras hemsida.

Här följer ett gemensamt tal från ELSA och ISA som beskriver det internationella samarbetet.

What you see here (slide), Ladies and Gentlemen, are Chinese characters. As you can easily read, the signs say »kou chi» which is the Chinese word for stuttering. (I was told by an expert, by the way, that the literal translation of »kou chi« is »to eat one's mouth« which obviously refers to some of the typical visual symptoms of stuttering.) I would like to start my presentation with a little story: Until a couple of years ago there was a myth circulating among stutterers in Western countries. The myth said that there was no stuttering in China because Chinese was a tonal language, very much like singing, and that for this reason you could not stutter in Chinese. Today we know that there definitely are people who stutter in China. We know that stuttering is a phenomenon that did occur and still occurs in virtually all languages, all cultures and in all times. A truly universal phenomenon.

So stuttering is an age-old problem. Stuttering therapy has a long history as well – a very interesting subject and certainly worth a conference of its own. Much younger is the history of self-help in stuttering. Of course, in all times there were stutterers who helped themselves. As you know we nowadays even say that professional treatment of stuttering is essentially based on a person helping him or herself. What I mean is the organised form of self-help – people meeting in self-help or support groups and establishing self-help organisations. Many of these groups came into existence in the mid-sixties and early seventies as part of the world-wide self-help movement. Self-help was a consequence of the fact that people who stuttered found their situation unsatisfying in various respects: For instance, there was a shortage of therapy places. Most treatment programmes did not consider the social and the psychological sides of stuttering. There was also a lack of after-care and maintenances, and we all know that one of the most crucial points in therapy is how to transfer successes achieved under clinical conditions into everyday life. Finally, self-help has also a social dimension as it questions the role communication and communication disorders play in our societies.

It is not my task here to talk about the accomplishments of self-help, support groups and stuttering associations. However, from my own experience as a person who stutters and as someone who works professionally in the field I would like to stress that these achievements are enourmous and that self-help has made a difference to the lives of countless people concerned. So in spite of all the things that still need to be done those groups and associations are already fulfilling their main objective which is to improve the lives of people who stutter. The presentation of Mr Lieckfeldt on the work of the British Stammering Association bore impressive testimony to this.

Nobody is an island, as we say in Germany. In a world of increasing globalization it was logical for national stuttering associations to get in contact with sister organisations from other countries and to look for ways to cooperate. Today this cooperation takes place within two organisations: the European League of Stuttering Associations and the International Stuttering Association. Europe played the pioneering role when in 1990 ten associations founded ELSA.

Five years later – in 1995 – non-European groups took the initiative and formed the International Stuttering Association. Today there are 38 member associations from 33 countries, the European ones being members of ELSA at the same time.

What are the objectives of international cooperation? ELSA and ISA have three main goals:

1. to provide a forum for exchange of concepts and experiences in stuttering therapy and self-help

2. to help represent the interest of stutterers to European and international bodies

Practicing exchange means to share information and experiences. All the national associations are more or less working in the same direction. They produce and disseminate information material, counsel people who stutter, do public relations work, cooperate with speech and language pathologists and so forth. But each association has its individual focal points and develops its particular methods and projects. By collecting all these data and information we obtain a pool of ideas and models of good practice that can be successfully repeated while failed initiatives and bad practices are not. Naturally, small associations can profit more from this than the larger ones. However, for the large organisations exchange enables them to take a critical look at their work concepts. So exchange is always a matter of giving and taking.

The European League has been promoting exchange for ten years by organising seminars and conferences. As a European umbrella organisation ELSA is in the favourable position to benefit from funding programmes of the Commission of the European Communities. Since 1990, twelve seminars and conferences have taken place. The funds granted by the EU amount to 70.000 Euro or 460.000 French Franc. While the first meetings were about general questions of stuttering and self-help, recent conferences dealt with specific topics as you can see on this slide. We successfully include therapists whenever it is appropriate – as it was the case with the conferences on self-help for parents or the one on helping stuttering pupils. Also, the seminars are no longer entirely European. For instance, at the Vienna seminar we had participants from the United States and Israel.

It is not always easy to collaborate with the Commission of the European Communities. The procedures to prepare applications and final reports are complicated. Often it is difficult to communicate with the personnel in charge, and sometimes payments are delayed. (To be quite honest – they are delayed most of the times.) But it must be clearly stated that without the EU funding programmes ELSA would not be able to organize any conferences. So for whatever reasons we may criticize the European Union – the stuttering associations in Europe are clearly on the winning side with the EU.

Nevertheless ELSA strives for finding alternative funding sources. In 1995 and 1997, European Youth Seminars took place funded by the European Youth Foundation which is affiliated to the European Council in Strasbourg. One of our motives here is to encourage young people to commit themselves to self-help work in their home countries.

One young man from the Slovakian Republic, for instance, set up a self-help group in Slovakia after attending a youth meeting, and a young lady from the Netherlands was even elected to ELSA board later.

The International Stuttering Association so far cannot base their work on any funding. Therefore, the ISA concentrates their exchange activities on the World Congresses of People Who Stutter which take place every third year. The series of congresses started in Japan in 1986. Meanwhile four continents have seen at least one World Congress – we are still hoping for Australia... Our Belgium colleagues in Flanders will host the next World Congress in 2001 – only a stone's throw away for the most of us, so hopefully we will meet there again.

The World Congresses developed from more or less informal meetings to a successful mixture of work and social event. The work part includes lectures and workshops on all aspects of stuttering, therapy and self-help. Very much similar to the ELSA conferences, these congresses are becoming more and more a link between people who stutter and researchers and clinicians. It is most satisfying to see that here one of the main goals of the self-help movement has been reached: to let all groups concerned with stuttering deal with one another on equal terms.

Both ELSA and ISA use further means to promote the exchange. They publish newsletters and maintain home pages on the internet – as most of the national associations do. The internet has resulted in an unbelievable revolution by providing information to everyone at any place at virtually no cost. I would like get back to this topic with a practical example in the last part of my presentation.

On to the second item: How do ELSA and ISA help represent the interests of stutterers? There are two areas: First, representation at political level, and secondly, representation to international bodies of therapists. As for the political level, ELSA again is in the favourable position to build upon the given political structures within the European Union. So far, the EU politics are clearly dominated by econonomic aspects. But measures for handicapped people are already being taken, even if they are often geared to the economic needs of the labour market. It is not by coincidence that most of the funding programmes for the handicapped are issued by the Directorate for Employment, Industrial Relations and Social Affairs. Anyway – it is important to be in Bruxelles. But as a small association with voluntary workers only we cannot do this on our own. Therefore, ELSA became a member of the European Disability Forum, an umbrella organisation of European non-governmental disability associations. The EDF coordinates their cooperation and lobbies / the EU parliament and the Commission. Of course, in first place this is about money that goes into funding programmes like the one which enables ELSA to organise seminars and conferences. But lobbying is also about general political questions. European disability organisations for instance fought very hard to achieve a non-discrimination clause in the treaty of the European Union. This demand was partly fulfilled in the Amsterdam treaty in 1997.

That form of political work sometimes seems to be out of place – after all, is all this still about stuttering? Also, in some national stuttering associations there are ongoing discussions wether or not stuttering should be regarded as a handicap. But this question is not relevant. What is important is / to be where decisions are being taken and to lobby decision makers. It is not unlikely that in medium term decisions will

be taken that can be of great importance for both / people who stutter and speech and language pathologists: for instance, when it comes to standardizations in the national health care systems or Europe-wide recognition of job qualifications.

In 1997 the International Stuttering Association approached the World Health Organization in Geneva. The ISA applied for the status of a non-governmental organisation in official working relations with WHO and expects to be accepted in about one year. Unfortunately, the World Health Organization is not in the position to give any subsidies, but there are other things the ISA can achieve through WHO: First, the World Health Organization will presumably recognize stuttering as a health problem which means raising public awareness of stuttering world-wide. I had the good fortune to take part in the initial talks at Geneva, and it became quite clear that stuttering had never been on the WHO agenda before! Secondly, to be in official working relations with WHO will be a great gain in prestige which may some day help raising funds and finding sponsors. Thirdly, it will be most helpful to make use of the world-wide information networks of the World Health Organisation to disseminate information about stuttering.

So much for the political level. Representing our interests to professionals means advocating the rights and needs of people who stutter as consumers of therapeutic services. Both ELSA and ISA maintain a close relationship with the International Fluency Association the chairman of which, Dr. Bosshardt, spoke to you before. I would like to emphasize that the stuttering associations do appreciate the open-minded concept of the IFA that considers all people concerned with stuttering - researchers, clinicians andpeople who stutter. Meanwhile IFA, ELSA and ISA cooperate in all important fields such as exchange, representation of interests and outreach.

Outreach is the next key word. Reaching out for people who stutter is what the national associations do by organising information campaigns, doing public relations work and so on. At international level, outreach means to promote the knowledge about stuttering and the idea of self-help world-wide. When you look at the list of countries who are members of the ISA and ELSA you can see that most of them belong to the so-called Western world. But even there we find great differences. In Europe for instance there are more stuttering organisations in the North than in the Southern part of the continent. Obviously, the development of self-help structures and public awareness of a disorder like stuttering is closely linked to the social and cultural background of the individual countries. And it must be more than simply the difference between developed and developing countries. After all, states like Portugal, Greece and Turkey are definitely no developing countries, and treatment of stuttering is available there to some extent. Yet there are no support groups or stuttering associations.

So what are the criteria which favour or hinder the development of support group structures? The situation in actual developing countries is even more difficult. It is not hard to imagine that in many areas of the world stuttering therapy does not have high priority in the national health care systems – which is a mild description of the fact that millions of stutterers have to live in societies where there is virtually no knowledge about fluency disorders, and adequate treatment is not available. In a way, this is all the more tragic because the self-help concepts existing today represent a cost-effective and easily accessible method of helping people who stutter – or, should I say, helping people help themselves.

It is to this background that ELSA and ISA put much efforts in their outreach activities. We are fully aware that we cannot always simply transfer concepts and methods from one culture into another but what we can do is to offer information, to offer our ideas. Professionals play a key role in promoting the self-help philosophy. Many support groups and stuttering organisations have been initiated by therapists. Here again, the International Fluency Association with their world-wide membership provides an exellent platform for approaching this target group. ELSA is systematically contacting health authorities and national associations of speech therapists in Europe. Much hope is also being placed in the World Health Organization. The Rehabilitation Department of WHO already published a series of easy-to-read brochures on various health issues aimed at people in developing countries. Such a publication on stuttering – distributed by the World Health Organisation – could be a milestone in the history our information efforts.

I would also like to mention the International Project on Attitudes Towards Stuttering which has been launched just recently. A working group – including members of the International Fluency Association – will seek to establish a survey instrument to explore similarities and differences in how stuttering is perceived in countries around the world. The results of this survey will help us to improve our outreach activities.

One of the most powerful tools in outreach and public relations work is - and will increasingly be - the internet. The reason for this is not only that the net to some extent abolishes the limitations of space and time. It also meets some special characteristics of our main target group. It is a well-known fact that many people who stutter need a long time until they are ready to look into a support group or to contact their national stuttering association. The internet provides an anonymous, private opportunity for people to begin to learn about their stuttering. As already mentioned, ELSA and ISA maintain web sites, as most of the national associations do. The most comprehensive site today, I think, is the Stuttering Home Page of the National Stuttering Project in the USA.

Finally I would like to introduce to you a project which combines all the objectives, goals and activities I presented before. It is International Stuttering Awareness Day, or, shortened, ISAD. The idea of a world-wide awareness day of stuttering was born at the membership meeting of the International Stuttering Association in 1995. The date was established as October 22nd, and first ISAD was realized last year with strong support from the professional community.

The stated purpose of International Stuttering Awareness Day is "to promote awareness and understanding and to show appreciation for people who stutter and the speech language professionals who work with them". An official ISAD poster was produced and distributed together with tips for education and awareness, proposing ways consumers and professionals could get involved with International Stuttering Awareness Day. And the message came across: Enormous and creative efforts were made by organizations and individuals around the world - not only in member countries of ISA and ELSA, by the way. Conferences, meetings and Open Days were held, information material was distributed and press realeases issued. At 12 o'clock noon on October 22, individuals around the world were encouraged to participate in an ISAD World Demonstration called "A Moment of Speaking" by turning to the person next to them and educating that individual about stuttering. It was reported back that there was a good response to ISAD activities from the media and the general public in many countries. In fact, ISAD is an exellent example of how national and local stuttering groups can benefit from international cooperation. Plans for ISAD 1999 are currently underway, information will be sent out during the summer. The theme has already been chosen: "Think Globally - Act Locally"

One special and particularly successful feature of International Stuttering Awareness Day 1998 was an online conference on stuttering that took place from 1st until 22nd of October. The conference was organised by Judy Kuster, speech-language pathologist from Minnesota, USA, and Michael Sugarman, chair of the Consumer Affairs Committee of the IFA. The idea was to provide a global platform in context of the ISAD for exchange of information and opinions. The conference format was achieved by inviting papers and putting them online. Each of the papers had – what is called – a "threaded discussion" linked to it where anyone who read the papers could post comments or questions and the authors of the papers could respond before the end of the conference.

I don't mean to bother you with statistics but just to give you an impression here are a few figures: There were 30 conference papers presented by authors from all five continents. The presenters included people who stutter and professionals from various fields, and the papers covered all aspects of stuttering, self-help and therapy. The front page of the conference was opened up more than 3,300 times during the 3-week period, and the entire conference site had about 23,000 requests for information. Considering the fact that it was the first conference of its kind and time for preparation was short these are encouraging facts and figures, and we were more than pleased when Judy Kuster announced just recently that she is prepared to organise another online conference in 1999. The papers and discussions of last year's conference, by the way, are now permanently housed on the Stuttering Home Page, the web site of the National Stuttering Project, so all the information is still available there.

This, Ladies and Gentlemen, was a – hopefully not too long – overview of international cooperation of stuttering organizations. The activities I introduced to you are part of what we all are working for - no matter if it is locally, nationally or internationally, and no matter if we are people who stutter or professionals. The only thing that DOES matter is our dedication to improving the conditions of people who stutter. This is what YOU are contributing to with your conference. I am looking forward to meeting you again – maybe at one of the next ELSA conferences, maybe at the next World Congress of People Who Stutter – or at any other occasion when we will speak with one voice again.

Övriga nyheter från hela världen:

I am delighted to announce that the Distinguished Service Award of the American Speech-Language-Hearing Association, for the year 2003, will be presented to the National Stuttering Association at the annual convention next month in Atlanta, Ga.

For 25 years, the NSA has brought hope, dignity, support, education and empowerment to children and adults who stutter, their families, and the professional community.

In case you have not heard, our own Judith McGinnis Kuster has been selected to become a FELLOW of the American Speech-Language-Hearing Association. This will be awarded during the ASHA Annual Convention in apout four weeks. For Judy-- this is well earned and well deserved. Congratulations, Judy.

På internationell nivå har man framställt en lista på "rätter och plikter". Läs gärna och kommentera.

This Bill of Rights and Responsibilities provides guidance on the rights and responsibilities of people who stutter. It was drafted by participants at the "ISAD Bill of Rights Workshop" facilitated by Michael Sugarman and Amy Johnson at the 17th NSA Convention in Chicago, Illinois; modified by Kenneth St. Louis; and further modified by Luc De Nil based on feedback from congress participants at the IFA Third World Congress in Nyborg, Denmark. We are soliciting your comments, additions, and modifications to this draft. Please send your comments to ISAD22OCT@aol.com Thank you.

Preamble

Established in 2000, the Bill of Rights and Responsibilities for People who Stutter is a joint project by people who stutter, professional clinicians and researchers. It provides a framework for building a more humane, just, and compassionate world for the millions of people who stutter.

In our society, speech is considered one of the most important means for interpersonal communication. While other means, such as written language, may be superior at times in conveying the content of messages, spoken language not only contains the content, but also includes information about the speaker’s intent, emotions, personality, and perceptions. That is why people who read books still like to attend readings by authors of these books, and why millions of dollars are being spend developing tools that allow for automatic voice recognition systems and the incorporation of voice and images in electronic communication.

Unfortunately, the window that speech provides on the speaker’s self, also can lead to stereotypical perceptions of people with speech disorders that go well beyond their speech difficulties.

While spoken word is taken for granted by most, the use of spoken language is challenging for millions of people who stutter around the world. It is estimated that approximately 1%, or 60 million, of the 6 billion people with whom we share this world, stutter. For many of these individuals, daily communication is a constant struggle. For many of them, speech does not open doors but closes them for interpersonal, academic and professional development and fulfilment. Despite advances in our understanding of stuttering and its treatment, many people who stutter around the world do not have access to the services and support they deserve.

This Bill is written to foster attitudes and actions whereby individuals who stutter are provided the opportunity to fulfill their aspirations and to lead successful, productive lives. It recognizes the dual responsibility of listeners and society to create the environment in which people who stutter can develop their aspirations and talents and of people who stutter to advocate better understanding and to become active partners in their own future.

BILL OF RIGHTS AND RESPONSIBILITIES

(Nu även i Esperanto och på Hebreiska (behöver Hebreiska tecken))

Nordisk/ELSA/ISA

Nordiskt samarbete

Europeiskt samarbete: ELSA