Youth rheumatics breaking barriers in Norway

By Lars Espen Rath Vestad. Translation by Linda Vøllestad Westbye, Kate Nash and Lars Espen Rath Vestad.

Have you ever seen a young person with rheumatism jump out of a wheel chair, jump into the water and go water-skiing at 30 knots? The water is splashing, the laughter is high and the rheumatics are breaking huge barriers at The International Youth Congress (IYC) in Norway.

75 participants from 22 countries all over Europe have taken part in the IYC 2001. It was arranged by BURG Norway, which is the Norwegian Rheumatism Association of youth and children, and IOYR, the International Organisation of Youth with Rheumatism. IOYR is an international umbrella organisation for youth with rheumatic diseases.

- It may sound strange, but already now, we can say that the Congress has been a success. The Congress started Saturday evening, and some of our goals were that people should flirt, fall in love, and that laughter should be an important part of this. Beside this, the feelings are also important. People are allowed to cry when they get strong emotional impressions. And actually, all this has happened. And the congress is still going on, says Georg Hodnefjell, project manager of the IYC in Norway 2001 proudly.

For what could be better, than young people being themselves, inspite of illness, pain and a daily life which may be very sad.

- Here, everybody could be themselves – as other youths, without any chronic disease or disability. For many people, it’s a huge barrier to use a wheelchair in public. Crutches can been seen as very negative and makes other people ask questions. These have been themes that have been talked about during the Congress. The Congress is taking place in an activity camp with breaking-barriers-activities and general assembly for the IOYR, beside being a professional Congress with professors and doctors.

- I have even seen rheumatic people raise from their wheel chair and go water-skiing, horseriding or canoeing, Hodnefjell says. 30 knots on the lake with the rheumatics was a great experience.

- We want people to be themselves. We shall break barriers, move personal boundaries and teach people how to own their own health and life. This is the main purpose of the IYC 2001, explains the project manager who goes on:

- Increasing awareness is an important part of the Congress. Through lectures, classes, group-work and speeches with themes like sexuality, getting married, having a child, can people be open-minded about taboo themes, which are usually not to be spoken about in the daylife.

The atmosphere and environment of the Congress can’t be described. I have tears in my eyes myself, says Georg Hodnefjell with some tears in his mind. He wishes this could happen more often.

But this is a huge project.

- We have a budget of 100.000 US dollars. The Congress is arranged every third year, and the project-group has been working at this for nearly four years. The weeks leading up to the opening are impossible to describe. It was so much work, with stressful tasks and attention to detail. But, the power had increased in me already by then. And I’m still collecting this energy, Hodnefjell says and tells us an example:

- Yesterday, I was singing karaoke for lots of people. I’ve never done this before. It was a big barrier for me, and I couldn’t have done this without the power from the IYC 2001.

More articles about the IYC 2001:

Articles from Newsletter no. 7 - August 2001

• IYC 2001 is over, by Dorte Rønsler, chair of IOYR

• Once upon a time, by Gábor Kürtösi, Hungary

• The week was too short, by Signe Bicule, Latvia

• Breaking barriers, by Camilla Ladestam, Sweden

• You are accepted, by Ingrid Kósová, Slovakia

• A sense of belonging, by Richard Jeffery, United Kingdom

• Heavy, cosy and relaxing by Lucinda Blauw, Sylvia Langbroek and Juul van der Veen, the Netherlands

• The whole wide world at one place, by Tina M.-L. Mortensen, Denmark

Other articles:

• At my first IYC, by Halla Hrund Himarsdóttir, Iceland

• Meeting of Young Rheumatics in Norway by Romana Lukasova

• More to come - if you have any articles please mail them to postmaster@ioyr.org.

More about IYC 2001

July 2001