Hello once more from the board of IOYR! Firstly we must apologise for not being in touch sooner. With only four members of the board it is sometimes a struggle for us to deal with work and study commitments and also our health issues. However, we are back "in the driving seat" and wish to tell you of our work over the past few months. One exciting development is that we are launching our new website. Feedback we received from members at the General Assembly and by e-mail about the website told us that it was out of date and not "dynamic" enough. We asked what people would like to see and they asked for more pictures and easy to find information. We hope you will check out the new look website and please send us your comments. Please also send us information about your organisation, pictures and details of your activities. We can add information about you future activities and assist you to make this public if you send us the information in advance.

Also very exciting for the board was our board meeting in Prague. We were delighted to be invited by Jana Korandová, from the Czech Republic organisation, Revma - Liga v Ceské republice (Rheuma League in the Czech republic)

The Czech Republic would like to host an IOYR Member’s Meeting next year. We will tell you more about this later in the newsletter.

Jana was so helpful in helping us to find an affordable, accessible hotel for our meeting and organised some visits for us to see the city. We had a good meeting with Jana and some other people from the Czech organisation to discuss the details for the Meeting. We sometimes struggled with our language barriers, but what is clear is their commitment to assist IOYR bring together young people with arthritis to share information and help challenge disability barriers. We hope you will join us at the Members Meeting in Prague!

The IOYR board meets monthly online and we’d also like to invite you to an IOYR chat on the 12^th of every month at 7pm UK time at the IOYR website. We look forward to "seeing" you there! Please also remember to send us your articles for the newsletter and for the website.

In this edition:

An interesting visit to London

Estonian Youth Camp

Friendships and relationships

Cyprus seminar

Members Meeting 2006

About five months ago, a friend of mine and I had the idea to go on holiday together. Our destination was soon agreed – London. As I had already visited the UK capital a few years back, it was clear from the start which sights we wanted to see.

However, we had slight worries while planning the trip. The friend who wanted to accompany me has had severe hip problems since her birth and I myself have had polyarthritis (with uveitis) for about twelve years. Therefore we asked ourselves if we would be able to stand such a trip physically. The choice of the youth hostel was not easy, since we were not sure if we could find suitable accessible accommodation for disabled people. We decided for "The Generator" – accommodation for youths and adults which is rather cheap and futuristically furnished.

Having finally arrived in London in August, we were surprised how much the hostel was prepared for disable guests. An elevator, broad doors and friendly employees were only some of the peculiarities of the hostel.

This however was just the beginning. The tube stations had elevators and most of them even escalators. The tube employees were always willing to help, like most of the other British people. Information or help with carrying the suitcase was soon organised and we quickly got over every little obstacle. In spite of our impairments our activities were a lot of fun. A boat trip on the Thames, a walk through Hyde Park, shopping in Covent Garden and visits to museums were possible for us disabled people as well.

To sum up, I can say that London is a city prepared for disabled people, where people are very helpful and obliging. A visit is a must for every traveller.

So, readers, do you agree with Katrin about the accessibility of London? Have you a similar story to tell of your own travels? Have you had a funny experience because of your arthritis and the problems with access. What is it like in your country? Are there laws to help disabled people with travelling and getting around or with accommodation in hotels and hostels, etc? Write and tell us your experience. We will offer a prize for the best story and publish it on our website. We would also love to see your photos to illustrate your story.

Katre Lember, Estonian Youth Rheumatism Association

On 13–20 March 2005, a youth camp "Be Who You Are" was organised in the Nelijärve Holiday Centre. Two Estonian organisations, the Estonian Youth Rheumatism Association and Tapa Child Welfare Union hosted the MLL — Mannerheimin Lastensuojeluliitto (the Mannerheim League for Child Welfare, Naatali region) from Finland and the H2O people from Associação de Jovens de Arrouquelas (Arrouquelas Youngsters Association) from Portugal. All in all, about 30 people aged 16–30 had come together.

Having freshened up after the arrival, a week of exciting events was waiting for the campers. It had been agreed already before the camp that English would be the main working language during the week.

So people started out with a discussion on racism and national minorities. The first day culminated in the evening of nations where the representatives of each country offered their best delicacies. The organisations also introduced themselves. And finally, the agile Estonian girls, dressed up in authentic Estonian national costumes, gave others a genuine polka. Despite the cold, people were brave enough to enjoy outdoor activities — football, skating or skiing. These were completely new activities for at least a third of the campers, who had never tried them before. Everyone who was able to remain standing on skates and was not toppled over by the wind, helped out the other newcomers to this sport. The outcome was stunning — we did not need an ambulance and all the people left Estonia as fit as fiddles.

On the second day, we had guests who spoke about European Voluntary Service (EVS), its activities and how to join it. Besides that, we practised outlining the main points of a project. For workshops, mixed groups of the participants from different countries were formed to encourage everyone to contribute and communicate more actively in English. While one workshop group took a course in first aid under Angela’s supervision, the other group travelled to Tapa where Ivar organised a survival course.

At noon on the third day, everyone was taken to Tartu by bus, where we visited the Aura Water Sports Centre. Those who were not tired afterwards could spend their free time in the city.

In the morning of the fourth day, the entire camp arrived at the Tartu Youth Centre, in which laughter and movement therapy sessions were carried out in two groups. Both group works were fun and united the participants even more closely. You can try it yourselves: invent an "artificial" language and try to make yourselves understandable to others. In the afternoon, it was possible to use the Internet or to go and see the Tartu City. By the evening, we went back to Nelijärve and played Mafia — which is a wonderful card game!

On Friday, those who had taken the survival course a couple of days ago could remain indoors, the other group was sent into the woods. Flying with the rope or climbing the spider web were only some of the tasks that we were assigned that day. Everyone could have an extra amount of adrenalin in fresh air and the thanks for organising the event go to the Estonian team. Back alive, Finland took over and under their leadership the participants spoke about the educational systems of their countries.

The last camp evening was for an event called Show Yourself, which consisted of various performances, songs, dances and games.

Each evening we wrote down and spoke about the pluses and minuses of each day, and naturally, there were more pluses.

On Saturday, Nelijärve was suddenly silent after our songs as we were heading for Tallinn already. We stopped at the Diaconal Centre, where we said farewells to our guests the next day.

We wish to express our thanks to everyone who offered accommodation and catering. You did your work with all your hearts and we will be looking forwards to meeting you again.

The declaration of Human Rights states that we have a right to life, a right to personal and family life, a right to be active citizens of our country and community, the right to marry and have children, among other things. As human beings we have these rights, being disabled people does not take these rights away from us, but the way society works often does. Disabled people are not often seen in society or the media in a positive way. How can we be treated as equal citizens if we’re denied the basic right to be ourselves and excluded from the rest of society because we look a bit different or need extra help to do some everyday things? Unless we speak up and are listened to, we allow society to take away our rights, self – respect and self – esteem.

Having relationships is a basic human need. We all need to love, to care about and interact with those around us. Relationships are important because we can talk openly and share our thoughts and feelings without being judged and with really close friends we also know we can trust that they won’t spread gossip about us. For many disabled people it’s hard to find someone like that. We’re so used to being asked personal questions by people who come into our lives, that we sometimes forget that it’s ok to say, "I don’t want to answer that". For example, how many times do you get asked "So, what’s wrong with you then?" or "Why are you using that wheelchair?" For me it’s usually taxi drivers when they see me struggling to get into the car. Or I see people staring at me and noticing that my hands look a bit different. I used to think I had to answer questions like that but now I feel confident enough to say, "that’s not actually any of your business" or ask them "why do you feel you need to know that?"

Before I met other disabled people, I thought I was alone in this world. I felt I had to do everything to suit other people and had very little control over my life. Believe it or not, I was very, very shy and terrified of taking part in everyday activities. I kept sitting outside my local disability organisation, terrified to go in, thinking that everyone would stare at me and think, "Who’s that? What is she doing here?" I felt that they would all know each other and that they’d know much more than me and I would look and feel stupid.

One day my life changed. I met another young person with arthritis. She had recently been diagnosed and asked me what it was like. As I’d had arthritis since I was a young child I was able to help her by giving her information and advice. Before I knew it we were really good friends and for the first time, being a disabled person was an advantage to me. Helping her made me realise that I wasn’t stupid and that I could make friends. Together we joined a local arthritis self help group and within the year I was running it! I then went back to my local disability organisation and this time managed to walk through the doors! I could feel my heart racing and I thought I was going to faint, but I carried on and was met by a friendly person who smiled and said, "Can I help you?" I met some other disabled people and I enrolled on a course to help me build up my confidence. By the end of the course, I was asked if I would consider coming along to meet some of the board members to have a chat about joining the board. Me? This shy, quiet, little person was being asked to join a board of directors! That was about seven years ago now and guess what? I’m now the chair of the board.

Without these people, who have now become good friends, I would probably still be that quiet, shy person and I would certainly not be working full time. Relationships come in all forms and the best relationships are the ones we have with people who make us feel good about ourselves, build up our confidence and our self-esteem. Once we do that, then other relationships follow. I don’t think it’s a coincidence that I met my future husband after I finished the confidence building course, as I’d never have had the courage to even speak to him before then. Also as I felt better about myself, I was able to think that he could like me and want to be with me and I’d never have believed that before either.

So, try to think about "relationships" in its widest sense. How many people do you have around you that you can trust, who make you feel good about yourself and who give you the confidence to be yourself? Once you have people like that in your life, then other relationships often occur without realising it, by co-incidence. I’d like to hear how you’ve managed to meet your best friends and what effect they’ve had on your life.

Marianne Cunningham UK

On Saturday 11^th December 2004, the first workshop and seminar event "Information and Education of young people with Rheumatism" was successfully carried out at the Hotel Europa. This event was organized by the Cyprus League against Rheumatism for its young members.

The topics discussed were the following:

• "Communication as a necessary tool in the relationships between family members" by specialist psychologist Mrs. Fotini Ikonomidou.

• "Sexuality and Rheumatism; the importance of mutual understanding between partners" by Dr. Lorrie Kiriakou, specialist dermatologist, venerologist and sexologist.

• "The consequences of pain and the importance of relief therapy for rheumatism" by Dr. Sophia Pantehi and psychologist Mr. Achilleas Kokidi.

• "New Medical Methods. Everything you ever wanted to know about your condition by specialist rheumatologists, Dr. Marilena Solonos and Dr. Marios Klirides.

The participants in this event were given the opportunity to be enlightened and informed on subjects of interest and educated on ways for improving their quality of life. Special thanks were given to all speakers as well as the sponsors of the event, Shering-Plough Company (M.S. Jacovides & Co, Ltd.) and the Youth Board of Cyprus.

On behalf of the Cyprus board