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Published in July/August 99
IYC 1998 - now
What happened since IYC 1998?
by Lucinda Blauw, Netherlands - chair of IOYR
In short: Two IOYR board-meetings, two meetings with Searle/Pfizer, one
EULAR congress and
one new member country.
Two Board-meetings
During the two board-meetings we tried to get to know each other a little
bit better which was really
difficult because we haven't succeeded in having a meeting with the complete
IOYR board yet.
We talked about the IYC 2001 in Norway, the Newsletter, Into Work International,
Partnership, the
IOYR homepage, the Members Open Day, Public Relations, the Searle/Pfizer
meeting and the
EULAR Congress. You can read about most of these subjects somewhere in
this newsletter except
for the next ones.
Searle/Pfizer meetings
At the end of April the whole board of IOYR, together with national arthritis
organisations, was
invited to attend a European workshop for people with arthritis in Prague
which was taking place in
the middle of May. The pharmaceutical companies Searle/Pfizer sponsored
the workshop. They
asked the workshop to provide them with concepts and suggestions for a
joint European initiative
involving themselves in partnership with people with arthritis.
In the morning several speeches were made about the purpose of the meeting,
about the
organisations present in the meeting, about Challenging Arthritis (the
Arthritis Care Self
Management Programme) and about Patient Partners (a programme in which
trained patients train
doctors how to examine joints).
In the afternoon the group split into two. Group one had to examine how
the organisations could be
mobilised most effectively and what capacity needed to be developed. Group
two looked at the
issues of improving the exchange of information and the organisation of
empowerment training.
At the end of the meeting in a plenary session the attendants agreed that
the suggestion for
Searle/Pfizer should include the preparation of a European manifesto on
arthritis in which all
arthritis organisations agree on a set of common objectives. This manifesto
could be used as a
common agenda for joint action and action by the individual organisations
and also to increase
public, political and professional awareness of arthritis in Europe in
particular.
Another suggestion was an action plan which included among others: Development
and
maintenance of a Website, a Europe wide empowerment training programme,
development
programme to enable patient groups to start in countries where they do
not exist and an
International Youth Congress.
To make a start a steering group was appointed to oversee the work of
producing a draft manifesto
and action plan.
On 9th June the steering group had its first meeting with some people
from Searle/Pfizer. Now we
are waiting for them to give the steering group the green light.
So, ............... to be continued.
EULAR congress
On 8th June IOYR was given the opportunity to speak at the EULAR (European
League Against
Rheumatism) Congress in Glasgow. The first speech was in the programme
for the support groups
of the paediatric rheumatologists. Dorte Rřnsler told about
growing up with arthritis and Lucinda
Blauw told about the importance of getting involved in an arthritis organisation
and about IOYR.
The second speech was in the Social Leagues programme and was chaired by
Prof. Rasker from the
Netherlands. Dorte Rřnsler told again about growing up with arthritis, Catherine
Gibb told about
the first results from the questionnaire given out at the last International
Youth Congress in Berlin
1998 and Lucinda Blauw told about past, present and future activities and
plans of IOYR.
It was good to be at the congress, we made some contacts with non-IOYR-member
countries and
we spoke with people from a lot of different organisations. One big result
of the EULAR congress
was that the president of the French arthritis organisation agreed to become
member of IOYR.
Welcome to our 14th member: France.
These are the impressions about IYC 98 in Berlin, Germany
by Vilma Bandzeviciute, Lithuania
It all happened in spring of 1998. I returned home from the University being
very nervous, because
I didn't pass the biochemistry exam. Everything went bad for me and I felt
unhappy. But in the
evening the telephone rang and it was Dalia, the president of our club "Artritas".
She asked me if I
would like to participate in the IYC in July in Berlin. Of course, I agreed
and every day and night I
was thinking only about the congress, because I had never been in such a
congress.
During this congress I felt very good in the company of all these young
people from different
countries. I even forgot my sick back and knees.
All the week was fantastic. I liked everything: lectures about rheumatic
diseases, about
employment, especially I was impressed by parties, a fashion show and creative
exercises, the trip
around Berlin and other things.
This congress was important for me because I became a board member in IOYR.
Everything was new to me and it was the first time in my life that I didn't
think: "I'm the patient."
The place where we stayed had all the conveniences necesary for people with
arthritis and we didn't
feel any discomfort. And when I came back home with lots of good experience
and impressions, it
was such a pity that these problems are not very urgent for the Lithuanian
government.
IYC 1998 in Berlin
by Montse Sánchez-Oro Pérez, Spain
Travel to different countries gives us the possibility to learn new things,
which makes us grow up as
a person and as a group. It allows us to meet people living with the same
problems and situations as
we are.
From my point of view, representing Spain at the international meeting of
young people with
rheumatism held in Berlin on July 98, was a great chance for me.
I would like to comment on the activities we developed during the week.
Every day there was a
main theme:
- Sunday 5th July; Me and arthritis.
- Monday 6th July; Me and my life.
- Tuesday 7th; Us and IOYR.
- Thursday 9th; Me and the others.
- Friday 10th; Me and work.
We didn't wake up really early in the morning, had breakfast around 9:30
and met at the
Auditorium, where an introduction on the theme of the day was given.
During each morning we had talks from doctors and experiences about our
own lives reported from
Holland, Denmark, Germany and Spain. It was interesting to see a person
confronting his fears and
speaking to a lot of people about his life and daily problems.
Lunch was around 12:00 and in the afternoons we had discussions about practical
aspects and
adaptations (for daily use). We also had team workshops on education, profession,
transport, living,
social surrounding and holidays. In each group everyone told each other
about the situation in their
country; in the discussions I understood that Spain has a long way to go.
We also had creative exercises in the afternoons directed by Pablo Ruiz,
so we had to walk in the
room or dance, etc. In the beginning I was a little bit shy but soon it
disappeared and I enjoyed
every day.
The dinner was around 5:30, and we went to the Auditorium again for a short
summary and
conclusions about the day. After that, there were different kinds of activities
like theatre, a
barbecue, prét a porter or a little party.
One of the most important things we did on Tuesday, was the election of
a new Board made up of
Lucinda Blauw (Holland), Catherine Gibb (United Kingdom), Georg Hodnefjell
(Norway), Dorte
Rřnsler (Denmark), Elena García (Spain), Anna Talaska (Poland) and Vilma
Bandzeviciute
(Lithuania).
Also on Tuesday we began the Partnership project for those countries that
were interested. This
project will bring us the possibility to help and to be helped by people
in other places with new
ideas and more experiences in the same way.
The feelings that I experienced in that week taught me so much about my
life. I think all the new
ideas and perspectives that this meeting offers us are a great thing for
my country.
Open day
You might have heard about this already and soon you will hear more......
But we can already tell you that the "Open Day" for IOYR members will take
place in spring 2000
in Copenhagen, Denmark.
At the open day you will meet other members of IOYR, you will hear - and
maybe tell - about
experiences in developing activities for young people with rheumatism.
All member organisations are welcome to participate with two young people
and one person from
the mother organisation.
We're looking forward to giving you more information very soon...........
IYC 2001
by Georg Hodnefjell, Norway
As you all know the IYC2001 will be organised in Norway by IOYR and BURG,
the Norwegian
Arthritis Youth Organisation. BURG's project-group has started the work
and plan to send out the
1st Announcement at the end of this year. This announcement will include
details about time, place,
cost and programme.
BURG's project-group and IOYR has worked at making a good slogan for the
Congress. The
slogan of the Congress is meant to express the main theme, which is the
basis of our programme,
speakers, speeches and other activities.
"The power in you" describes mainly the power inside each
human being as well as the
possibilities of self-creation to break barriers and develop the individual's
own life - because of
his/her handicap and illness. We will promote "the Scandinavian way"
of running self-help
organisations, which uses the patient's participation in the process and
the democracy. Just that to
own your health and focus on this for yourself as well as the society, is
very important for disabled
persons in daily life. The slogan may, in the congress in 2001, be a way
of constructing something
big for individuals and for their organisations, even if the organisation
are well established and well
known, or in the process of planning. We find personal richness and growth
is a very special pillar
for the expansion of the international co-operation, therefore the congress
will also have the theme:
"How to make international co-operation a platform for growth".
We want to exchange information and views; learning from each other and
also helping each other.
Young people with rheumatic disorders have specific experiences in daily
life, which could be
improved with personal exchanges with other people. Many will discover that
these experiences are
the same, irrespective of country boundaries and differences in language.
We want the participants
to take part in this process, which will be supported by our own contributions,
and by professional
speakers. The congress is a great occasion, which gathers young people from
all over Europe (or
even the world?) with different backgrounds. This social explosion will
move the individual to a
higher personal level and give everyone a lot of great experiences over
and above the professional
programme.
The Dutch organisation
Information about the Dutch Advisory Committee on Youth Policy
by Lucinda Blauw, Netherlands
Organisation
In 1982 the Dutch Youth Committee was set up, in co-operation with and working
as a division of
the Dutch League of Associations of Patients with Rheumatic Disorders (DLAPRD).
The youth
committee had its own budget and could organise its own activities. Because
of the reorganisation
of the DLAPRD the youth committee also had to reorganise. That's why from
1. January 1998 the
youth committee no longer exists and the Dutch Advisory Committee on Youth
Policy (DACYP)
has been set up. The aim of the DACYP is to advise the DLAPRD on Youth Policy.
The chairman
of DACYP is one of the board members of DLAPRD, so there are short lines
of communication. A
youth worker is employed at the office of the DLAPRD. When the DLAPRD approves
the youth
policy, the youth worker has to take care of the execution of the policy.
There are a couple of
working groups especially set up for the execution of specific parts of
the youth work.
Because of the fact that the DACYP is a division of DLAPRD, DACYP doesn't
have any members.
At the office of the DLAPRD we have a youth file with addresses of about
150 young persons with
rheumatism, and we can contact these people directly. When we want to advertise
for an activity,
we can put an advertisement on the youth page in the magazine of the DLAPRD
which is called "In
Beweging" ("In Motion").
Activities
ˇ Once or twice a year the "working group youth contacts" organises
a youth weekend for
young people with rheumatism and their partners. It depends on the theme
of the weekend
what age group is invited (16-25, 26-40 or the whole group). Examples of
themes: how to
deal with your rheumatism, living independently, doctor-patient relationship,
developments
in medication and treatment, and of course, also more "creative"
themes: Sports, hobbies,
theatre, etc.
ˇ This year the working group for youth contacts is going to organise a
new activity: A
regional youth contact day, especially for the younger group. We haven't
decided yet what
we're going to do.
ˇ Every younger person with rheumatism can join a regional or local arthritis
association. In
some associations there is an active youth group. The "working group
support" tries to
support these youth groups all over the country. And if some young people
with rheumatism
want to start a youth group, they can get information and help with negotiating
with the
local arthritis association.
ˇ Following the example of the United Kingdom (Into Work), we are trying
to set up a
personal development programme.
ˇ We're thinking about what we should do with the Internet. We want to have
a homepage of
our own, but we don't know how and what yet.
ˇ Together with the Dutch Foundation Intercure, we're organising a "cure"
for young people
with rheumatism in Slovakia at the end of this year. We have tried to come
up with ideas as
to the way a "normal" cure should differ from one for young people.
There will be an
advertisement in the DLAPRD magazine and we are very curious how many young
people
will register.
For more information:
DLAPRD (Rheumapatiëntenbond)
Postbus 1370
3800 BJ Amersfoort
The Netherlands
rheumapb@wxs.nl
Tel.: +31 33 4616364
Fax: +31 33 4651200
International youth contact person:
Lucinda Blauw: l.e.blauw@wxs.nl
Fax: +31 842 123264
Lithuania - organisation
by Vilma Bandzeviciute, Lithuania
Our organisation was founded on 4 March 1994. Our meetings are held in KAUNAS
as most
members are located or are studying there. The organisation isn't very large.
There are 25 members
who are really interested in our work and activities. Most of the members
are young, energetic
people who don't think that man who has arthritis is a doomed man. We have
meetings once a
month. During our meetings we discuss our problems, studies and possibilities
for our daily life. As
our organisation isn't large we try to find more young people who have the
same problems. In
summer time we like to organise trips to nature where we try to forget all
our problems. There we
sing songs, dance around the fire and retell jokes. The main aim of our
organisation is to find more
and more possibilities for young people suffering from arthritis. In future
we want to found more
organisations in other Lithuanian towns.
The invisible handicap
by Dorte Rřnsler, Denmark
Sometimes I wish, that people could see that I'm disabled because I'm tired
of telling and
explaining every time I need help or people can't understand.
Understand
ˇ Why I park my car on the handicap-parking
ˇ Why I need some special arrangement in my apartment
ˇ Why I need to sit in a wheel chair when I have to walk long distances
ˇ Why I have a little smart BRAND NEW car
ˇ Why I'm feeling bad in winter and well in summer
ˇ Why I can do a lot one day and the next day I can't do anything ("I
must be lazy")
ˇ Why I get help from the public offices, when I'm able to work
ˇ Why I get home help
I am tired of feeling upset when I park in a disabled parking place. I have
realised a lot of times that
people comment that I park there, because "It's only for disabled people".
Some times I become happy, because then they also do it when some "thoughtless
non-disabled
idiot" is cheeky to park there. Other times I become irritated and
hold my parking sign in the air or
through the car window. Some times I don't react at all - at least outwardly.
I am also tired of explaining that I need help to do some things that "everybody"
else just does
without any help. Because if everybody else can do it - so should I because
there is "nothing wrong
with me"
When I have explained or asked for help I'm tired of seeing and feeling
pity from people. People
are then different because now I'm handicapped and then obviously they have
to talk and act
different to me.
I have also had the funny, but strange, experience to see the different
look from people when I'm
walking around (and don't look disabled) - by the way, how does a disabled
person look like? - and
when I, not very often, use my wheel-chair (and suddenly look disabled).
I know that I would experience some of it if I were visibly disabled. I
have rheumatism and it's
shown to different extents, both in children and adults. Of course I'm happy
that my rheumatism is
not that bad; but I'm tired of the attitude that you are only disabled if
you can see it.
I don't know how this attitude can be changed. I think that we, the people
with an invisible
handicap have to explain and explain. People don't trust other people enough,
so you just, and
without explanation, have to help when you are asked.
People often get insulted and cross when you don't explain well enough and
other people don't dare
to ask. It's also difficult, because some days it doesn't affect me and
other days I don't have the
power to answer their questions. But often I feel that I'm committed to
answer their questions,
because it helps to make people more open about invisible handicap.
Partnership
At the IYC 1998 the basis was made for closer co-operation between the IOYR
member countries.
Now IOYR would like to `widen' the relationships and make it easier for
IOYR members to know
what is going on in other countries and to get involved with partnership
projects between other
IOYR member countries. So, if you have plans to start up a partnership project
with your partner
country and you think that other countries would be interested, write it
down and send it to the co-
ordinator Lucinda Blauw (e-mail: l.e.blauw@wxs.nl / fax: +31 842 123 264).
She can put it on the
IOYR homepage and/or send the information to IOYR member countries who request
information.
If you want information about partnership projects you can visit the homepage
or if you don't have
access to Internet, you can ask for information from Lucinda.
News from you for us??
If you have news about your youth organisation which you think could be
interesting for all IOYR
members, please send it to Catherine Gibb by e-mail: catherine@porterin.swinternet.co.uk
or by
fax: +44 191 276 0122. Articles for the next newsletter should be send to
Catherine before the end
of August 1999. Newsletter number 4 will be sent out in October 1999.
The Aims of the IOYR
The overall aim of IOYR is to improve the situation of young people 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:
ˇ To exchange information and experiences and to learn from and help each
other.
ˇ To encourage the development of self-help in each of the countries.
ˇ To empower young people with rheumatism and enable us to get our voices
heard.
ˇ To raise public and professional awareness of the situation of young people
with
rheumatism and change attitudes.
ˇ To exert policy influence, both internationally and nationally.
ˇ To develop links between medical professionals and young people with rheumatism
and
increase understanding.
ˇ 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.
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