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Published in June 1998
IOYR: A Flashback
Michael Bernardy, Chair of IOYR, reports on the work of IOYR over the
past two years.
Some participants who we will welcome to the 4th IYC from 4 - 11 July
in Berlin, Germany, already
know each other from the last Congress in 1996 in Denmark. Time has gone
by very quickly and
everybody is looking forward to meeting each other again.
These people and also those who will participate for the first time are
hopefully curious to get to
know what will happen during the week long event.
But hopefully people are also curious to get to know what IOYR has done
during the last two years.
Of course, the Board is aware of the problems concerning the spread of
information to the
participants and the member organisations and we regret this. This didn't
work well in the past, but in
the future the new Board will take this into consideration and will work
on a better network within
IOYR.
The main project involved the most intensive effort at the same time -
preparing the IYC in '98 in
Berlin. The national German working committee co-operated very
intensively with the IOYR Board
to develop the programme together. After a long time full of work, the
IOYR Board and the
working committee finally hope that the event in Berlin will now be a
great success for all
participants.
The first steps for the Partnership Project had been taken in Denmark
'96. We listed neighbour
countries including participants from each country who wanted to act as
a contact. The aim is to
develop the co-operation between two countries as a first step, but then
going on to spread the
information gained to all member countries so that they can use them as
ideas within their own
organisation. There have been several invitations to national and local
meetings between these
contacts, so people had the chance to gain ideas for their own national
work.
The IOYR Board has produced a brochure which provides information concerning
the activities of
the member organisations. The aim is to spread the brochure between the
member countries to
provide examples of ways of working. For example the reader will learn
why Holland established the
"Rheumafoon" and why it was copied in Germany as well......
Concerning the progress of the network, the Board also worked on the second
Newsletter which
will be given out to the participants during the Congress. To increase
information between the IOYR
members, the Board will try to publish the newsletter more regularly in
future. However, we need
the active help of the other countries because IOYR is international.
Therefore, we also want to
know what's going on in your country! So don't hesitate to send some interesting
articles to one of
the Board members, if you'd like to report about something interesting,
crazy, sad, angry or mad!
A brand new project is IOYR on Internet! It's going to be presented
during the Congress and it will
allow a new forum for communication between IOYR and the rest of the world.
There will also be
links to mother organisations within the member countries. We are curious
to see how people
respond to this.
The Into Work Personal Development Programme is a good
example of how different countries
could work together. The aim is to help people with arthritis to develop
a positive outlook for the
future with a view to maximising employment prospects. Therefore there have
been several
transnational Courses where participants for Great Britain, Denmark, Holland
and Switzerland
learned to become trainers to develop the programme within their own countries.
Impressions of IYC '96, in Kalundborg, Denmark.
It was in May 1996 that my mother organisation asked me to participate in
the IYC 1996. I'm a 33
year old woman and I have had osteoarthritis in both knees since I was 17.
For me, it was a great joy
that I was elected to be the international representative from the Youth
Group in Switzerland.
During the congress I felt very good in the company of all these young people
from 17 different
countries.
For my personal life I can say that this week was a real success for me.
In the programme I could
learn more about my life with a rheumatic disease. Not one minute was boring
- there was always
enough to discuss and I a felt very good atmosphere in this group. This
was also developed by the
two parties where we could celebrate. It was the first time in my life that
I have had the possibility to
talk with so many different people from other countries.
Well, at the end I travelled back home with lots of good experiences and
impressions in my own
language. Since this IYC I have had lots of contacts with other people in
Europe and I'm happy
about the decision of the Swiss - Reumaligue to become a member of IOYR!
Jacqueline Mäder, Switzerland
Denmark - meeting with some foreign people coming from foreign countries,
speaking foreign
languages and maybe thinking in a foreign way and wishing to stay foreign
even in the future.
The beginning - we become acquainted with organisers and participants. Only
carefully do we enter
into limited relations. For example, someone helps us with opening the door,
when they see that we
are at a loss to open it ourselves. We can offer the same assistance to
others - explaining an unknown
word or passing the tea pot. You may say these are ordinary things, but
for us it means that foreign
faces are not so foreign any longer.
Kalundborg - the place of meeting. We can see a conscious effort on both
sides to make friends with
each other. The programme begins - lectures, a lot of fun, walks, discussions,
parties, the sea, the
sun, trips... Our eyes slowly begin to open and understanding slowly begins
to form in our heads,
increasing as time goes on - well, all of us are the same, after all! It
makes no difference whether we
are ill or healthy, cheerful or sad, sleepy or we have had our beauty sleep.
The positions of all of us
are the same. All of us long to have someone that would love us, that would
help us to get over
those difficult barriers. At the same time we long to offer the same and
even something more to
anybody else. Simply said, we long both to be loved and to love unselfishly,
but it is extremely
difficult for us to confess our longings to ourselves and bringing them
to life seems impossible.
Nevertheless, a little step could be enough and at once we could feel better
among other people.
Well, our understanding has built up which has its roots in the International
Congress of young
people with rheumatism, where we tried to make greater relationships from
little ones and where we
learned how to change the foreign faces into the well known ones.
Many thanks for giving us the opportunity to stay there.
Markéta Fostíková and Monika Kratinová, Czech Republic
What is "Into Work"?
A report from Denmark
The Dutch national Rhemafonds Hotel Groot Stokkert was the place where 19
young
Europeans with rheumatism met to hear about the Into Work programme in November
1996.
The participants came from England, Holland, Germany, Denmark, Switzerland,
Finland,
Lithuania, The Czech Republic. - Everyone came with the purpose to find
out more what
the Into Work programme was all about. Everyone knew, that it was something
useful
and personally challenging and that Arthritis Care, UK, has success in developing
and
running the programme.
Some of the participants had tasted small bites of Into Work at the International
Youths
Congresses in Coventry, UK 1992 and Kalundborg, Denmark 1996. The trainer
Mark
Doughty had made a good impression.
The expectations were very high even though we knew that we could not do
the whole
Into Work programme. At the course in Holland we should decide if we wanted
to adopt
the Into Work project or not.
Most of us had until this week only connected Into Work with Mark Doughty.
Now we
had the opportunity to meet the rest of the Into Work team and the tasks
and roles each
of them had in the project. Outside the present team we were introduced
to the role of
the mentors, which is a moral and essential support for the trainees through
the Into
Work period. The mentor will always be there for you - just phone or have
a meeting.
A very important condition for the project is that all the teachers and
mentors have
rheumatism themselves. We from Denmark are convinced that this condition
is right.
"Yes, it's easy for him to say, because he doesn't have rheumatism"
- It is all about
reliability.
During the five days we were presented for the idea of and the structure
of the
programme. The most important experience was to feel and understand elements
from
the five stages.
The five stages are:
· Stage 1 Introduction to personal development. You learn to
understand the external barriers. E.g. stairs, transport, economy and
social security, lack of personal assistance and understanding from
family, doctors etc..
· Stage 2 Achieving personal excellence. You learn about internal
barriers and how they are made.
· Stage 3 Goal setting for personal excellence
· Stage 4 Development of personal action plans with mentor support
· Stage 5 Getting into work / essential skills
· Stage 6 - the last steps on a long road - get into work or achieve a
qualification. The most important thing, you now have in your
backpack - you believe in yourself.
It was an efficient introduction to the programme. You had a precise idea
of what Into
Work can do for you.
When we, the Danes, went away from Groot Stokkert, we had a great appetite
for
running Into Work in Denmark. Each of us believes that we can get a personal
outcome
by joining the working group. At the same time we know that there in Denmark
are
people with rheumatism who need a kick in their buts to get further.
Into Work must be a success in Denmark - also because of Peter de Oude,
the
transnational coordinator, who we had the first meeting with in Holland.
Peter visited us
in Copenhagen in January 1997. He gave us specific ideas and supported us
in our
further planning of Into Work in Denmark. The fire is burning in Denmark.........(to
be
continued!)
The International Organisation of Youth with Rheumatism (IOYR) is
an association
of national organisations of young people (aged 18-35) with rheumatism,
initially
working in Europe. English is the official language of IOYR.
The Aims of IOYR
The overall aim of IOYR is to improve the situation of youth with rheumatism
(aged 18-35)
through information exchange, self-help and policy influence.
Initially the IOYR will focus on countries in Europe but will work in the
longer term on a truly world-
wide basis.
The main aims of IOYR are:
· To exchange information and experiences and to learn from and help each
other.
· To encourage the development of self-help in each of the countries.
· To empower young people with rheumatism and enable us to get our voices
heard.
· To raise public and professional awareness of the situation of young people
with rheumatism
and change attitudes.
· To exert policy influence, both internationally and nationally.
· To develop links between medical professionals and young people with rheumatism
and
increase understanding.
· To encourage more research into the experiences of young people with rheumatism.
The IOYR is a legally constituted organisation, registered in Germany. All
activities are led by
young people with rheumatism. Membership is open to one national organisation
of young people
with rheumatism from each country.
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National Organisations of IOYR Board (June 1998)
GERMANY (Chair of IOYR)
LITHUANIA (Dalia Braziulyté)
(Michael Bernardy)
Kaunas Club ,,Artritas"
BAK- Deutsche Rheuma Liga
Varpo 21-1
Bundesverband e.V.
KAUNAS 3031
Maximilianstrasse 14
Tel: +3707 79 1924
53111 BONN
Fax: +3707 79 9786
Tel: +49 228 76 60 60
Fax: +49 228 76 60 620
NETHERLANDS (Lucinda Blauw)
DENMARK (Dorte Rønsler)
Youth Committee
FNUG
Reumapatienbond
Ellemarksvej 47, Byg. 6
Postbus 1370
8000 Århus
3800 BJ AMERSFOORT
Tel: +45 8611 8521
Tel: +31 33 461 6364
Fax: +45 8611 7398
Fax: +31 33 465 1200
CZECH REPUBLIC (Jindra Dvoráková)
GREAT BRITAIN (Catherine Gibb)
Czech Reuma-Liga
Young Arthritis Care,
(Youth Section)
18, Stephenson Way,
c/o Jindra Dvoráková
LONDON NW1 2HD
Samova 24,
Tel: +44 171 916 1500
10 100 PRAHA 10
Fax: +44 171 916 1505
Tel: +4202 717 46 876
NORWAY (Georg Hodnefjell)
BURG - Norge
Prof. Dahlsgt. 32
0260 OSLO
Tel: +47 2255 7216
Fax: +47 2243 1251 |
