One vision!
Youth in Europe with Aniridia

Summer camp in Bussolengo (Verona, Italy), 3rd to 15th August 2015

Report

Participants

Germany: 7 people
Italy: 15 persons
Norway: 17 people
Spain: 10 people
United Kingdom: 9 people

Participants’ organisation during the camp

Each of the four adults was appointed a specific task: Trude was the overall supervisor and in charge of the programme’s implementation; Barbara was in charge of logistics (transportation, hotel, food, activities’ booking and so on); Linda, as a nurse, was the reference person for health needs like giving the best exercise and references in where to buy kratom and other supplements; Tim was in charge of Youthpass activities.

The young participants were divided in “colour groups” of 8-9 persons with a young leader; the groups were balanced in terms of gender, nationality and visual capacity, in order to ensure the maximum possible mixing while keeping the safety of participants and their need for a guide; the insufficient level of English of some participants required to have in same group someone from the same country to translate.

The colour groups were the main feature of the camp and the real “working units” to perform the project’s activities. Some activities required instead a division by countries or by skills.

Programme

August 1st – Saturday

Arrival of the organizing group to make agreements on accommodation and meals, to start programming and to check the locations for activities at the hotel (meeting and activities rooms, swimming pool, playing fields, outdoor spaces, …)

August 2nd – Sunday

Same as above

August 3rd – Monday

Arrivals – Welcome

August 4th – Tuesday

Get to know each other and become familiar with the hotel’s spaces and facilities

Division by colour groups and appointment to the first tasks

Youthpass in groups: a game on the grass where groups were required to find numbers scattered all around and to answer questions; each colour group could identify their members either by the colour or by the sound of the cry of an animal

In the evening the Opening Show

August 5th – Wednesday

My leisure

In the morning: Organizing the activities’ days. The participants were divided according to their skills. Groups were made for:

  • Swimming
  • Karate/Judo
  • Painting/ aquarelles
  • Goal ball/football
  • Basics in 5 languages
  • Music and dancing

Each group had to prepare a lesson during which each participant could experience the activity and “learn by doing”.

In the afternoon: Preparing for the trip to Venice. The participants were given information about the city and on the itineraries the colour groups had to follow, together with specific instructions on the equipment and behaviour required.

Evening: dancing/music

August 6th – Thursday

Venice. Each colour group had to follow a different itinerary during the morning, with the goal of reaching Saint Mark’s square. This was intended with a sort of “orienteering” walk. In the afternoon, a walk and a gondola tour. Then dinner at the Old Wild West restaurant (tex-mex cuisine)

August 7th – Friday

In the morning: preparing the European day. Participants were divided by countries in order to prepare a presentation on their homeland and an explanation of how it is to live with aniridia in their respective countries.

In the afternoon: walking and shopping in Verona.

In the evening: the opera Il Barbiere di Siviglia, at the Arena di Verona.

August 8th – Saturday

European day. Five countries present their homeland. Each country group made a presentation including games and acting or dancing

Evening: dancing/music

August 9th – Sunday

Youth in Europa with aniridia – One Vision

European corporations: The Vice-President of Aniridia Europe presented the work the federation has done in the past years, what it is doing now and which are the perspectives for the future. She insisted that a key point is the involvement of the young, in order to bring in new ideas and to ensure the future of our network. The two take home messages were: 1) do not ask what AE can do for you, ask what you can do for AE, because everyone can play a role; 2) be aware that while building a network you will have to deal with different cultures, ideas, healthcare and law systems. If you want to build a collaborative network, do not get stuck on prejudices about people from the other countries, open your mind and make the effort of understanding before judging. Then she answered the questions and she invited the young to submit suggestions for the Board of Aniridia Europe

Participants were then divided by colour groups to define their ideas and suggestions on: How´s the future – how will we like it to be? How to create a network of young people having aniridia in Europe. Each group presented their reflections and suggestions.

August 10th – Monday

Activities Day: Learning from each other and Learning by doing

The participants, organized in four groups that shifted from an activity to the next during the day, experienced:

  • Swimming
  • Karate/Judo
  • Painting/ aquarelles
  • Goal ball/football
  • Basics in 5 languages

In the evening, Spanish dances and music playing.

August 11th – Tuesday

Rafting on the Adige river. Participants spent all day on the river, paddling under the supervision of expert guides. They stopped to picnic and to take a bath.

August 12th — Wednesday

Colour groups worked on evaluation the Activities Day (how were the activities prepared, what they had learned, what they liked) and then presented it to all.

Then each group was given the task of summarizing two or more of the various aspects and activities of the camp, possibly in a lively and amusing way, for the closing party.

August 13th – Thursday

Gardaland, the amusement park

August 14th – Friday

Evaluation:

  • Youthpass
  • Reflections on the next camp. Participants worked in colour groups to reflect on their experience and to prepare suggestions for the next camp, focusing not only on when and where, but also on organizational issues such as number of participants, number of countries involved, programme, activities.
  • Preparing the evening show

Closing party with a summary of the camp, music and dancing

August 15th – Saturday

Departures

Achievements

The two topics of the project were successfully implemented.

Meaningful leisure included learning by doing and from each other in activities as swimming, karate, judo, painting, football, goalball, languages, dancing and music playing. The participants experienced on one hand the task of working in group to prepare a lesson, with the goal to transmit their skills and their enthusiasm to the others, and on the other hand the possibility to try something they’d never tried before. And all this having real fun!!!

Furthermore, they visited two of the most beautiful cities in Italy, Verona and Venezia. In the former, they had the opportunity to attend the opera Il Barbiere di Siviglia at the Arena di Verona (the ancient Roman theatre), a quite rare experience for a young person. In the latter, they followed different itineraries as in a “treasure hunt” looking for monuments and interesting spots, and had a gondola tour kindly offered by the local association of gondoliers.

Rafting on the Adige river was a beautiful yet demanding experience, paddling all the day on the river, in an atmosphere of amusement and sound competition.

European corporations was the occasion for a thorough and in-depth reflections on the challenges that every person affected by a rare disease comporting a disability has to face in his/her life. The message of mutual help, collaboration, reciprocal empowerment was clearly conveyed and discussed, placing the possible actions in a supranational and specifically European perspective. In this, the experience of Aniridia Europe, the federation of the aniridia associations and representatives in Europe, that gather people in 20 countries, was presented as a significant story to show what can be achieved by a group of people determined to work together in spite of the national differences and focused on improving scientific knowledge of the disease, and a better treatment and care for all people in all countries.

The focus was therefore on inspiring the young to improve their skills and to educate themselves with the objectives of coping with their difficult challenges in a complex environment and of building a network of young people with aniridia in Europe as the main way to promote knowledge and improvement.
Moreover, the informal learning was widely performed during the free time and during meals, and quite quickly the participants began playing together overcoming the difficulties with visual impairment (in the swimming pool, at the bar tables, in the garden, in the football ground…), organizing shopping tours in the nearby town, talking in groups and exchanging experiences in the evenings and so on.

An overall evaluation of the camp shows that it was a very positive and instructive experience for all the participants. It is an important step to build a strong and long lasting connection among the young people with aniridia in Europe, a fundamental basis for the future of any possible action towards the objective of improving the quality of life and care for people affected by this rare disease.

See video filmed at camp: Try and try again – Low vision in sports.

Criticalities

Group composition: a key point proved to be the composition of each national group. Not all the groups were well balanced under the following aspects:

  • Not enough guides for the visually impaired.
  • Insufficient level of English of some participants, that constantly needed translation

Adult leaders: the tasks were clearly defined and appropriately shared among the four adults, but in some moments they were overwhelmed by all the issues they had to cope with. It must be said that some more adults were expected to be in the group, but eventually did not come.

 

Barbara Poli
Bussolengo (Verona, Italy) , September 2015