Här kan du läsa mer om det nordiska samarbetet, nordiska seminarier mm.
Europeiskt samarbete: ELSA
Se separat sida
Se även www.elsa.info där du kan läsa om ELSA:s verksamhet, tidningen Voice of ELSA, diskriminering, EU handikapparbete, broschyrer, skrivelser, uttalanden och mycket mer.
Internationellt samarbete: ISA
Se separat sida
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.
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.
work of the international associations
for people who stutter
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
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
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:
provide a forum for exchange of concepts and experiences in stuttering therapy
help represent the interest of stutterers to European and international bodies
promote the idea of stuttering self-help world-wide
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.
what are the criteria which favour or hinder the development of support group
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
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
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.
Hello to all.
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.
This is indeed an honor, and an important moment in the NSA's History.
Hello to all you other participants !!
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.
to all, Steve
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.
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.
OF RIGHTS AND RESPONSIBILITIES
A person who stutters has the right to . . .