Number 36 • July -December 2005 Widening horizons eafblind International was formerly known Das the International Association for the Education of Deafblind People. A message from the DbI Review appears twice yearly, the two editions are dated January-June and July- president December. The editor will be pleased to receive articles, It seems just like yesterday news items, letters, notices of books and that many of us were in information on forthcoming events, such as Presov, Slovakia at the conferences and courses, concerning deafblind European Conference. children, young adults and older people. This extremely successful Photographs and drawings are welcome; they will be copied and returned. event brought many people together from All written material should be in the English language and may be edited before publication. many countries including a It should be sent for publication to arrive by the strong representation from date below. Central and Eastern Europe. Opinions expressed in articles are those of A large number of people the author and should not be understood as put in many hours of work, representing the view of DbI. both in the preparation DbI Review is also available in Spanish or on and during the conference we have met in January, disk. If you are interested in receiving your copy itself, to make it work so at the Asian Conference in in either of these formats, please contact: well. I would like to add Dhaka, it will be possible to DbI Secretariat my personal gratitude to let you know more about the Post Box 9601 local and scientific planning process. Janakpuri committee members, It has been an extremely New Delhi – 110058 India speakers and stream leaders busy period since Slovakia and the invaluable work of but also an exciting one. [email protected] Fax: 91 – 11 – 25618430 our “orange angels”, who Meeting professionals, as volunteers, delighted and parents and deafblind people supported us so well. I must from different countries also express gratitude to and in particular Greece Richard Hawkes, who joined and Cyprus was a highlight the local planning committee this Autumn. They showed Editor Eileen Boothroyd to support them to achieve great interest in joining us. I Design their dream. The conference look forward to welcoming Geoff Dunn proceedings will soon be them into our organisation Distribution and DbI Membership completed and distributed. as they are preparing DbI Secretariat Prior and during the their applications as small DbI Website conference the Management Corporates and as individual Eileen Boothroyd and The Secretariat Committee and the members. Editorial Office Sense Council met to discuss the Another opportunity, which 11–13 Clifton Terrace issues currently affecting will stay in my mind, was London N4 3SR the development of our the opportunity to attend United Kingdom organisation and our the well-organised Rubella Tel: +44. (020) 7272 7774 Fax: +44 (020) 7272 6012 future gaols. As a result the course at the Nordic Staff Email: [email protected] Management Committee Training Centre. Apart from http://www.deafblindinternational.org will be undertaking some the content and programme, strategic planning to take which I found stimulating, I Cover: “Exploring”... a student from account of these discussions. enjoyed meeting colleagues Les Hauts Bregille, Besançon. It will look at mechanisms to and was delighted to learn involve members as fully as that a network may be on the possible in the process. Once cards. They will be among a LAST COPY DATE FOR THE NEXT EDITION: 10 April 2006 2 • DbI Review • JULY – DECEMBER 2005 number of groups applying and inclusive. This can CONTENTS for recognition and I know only happen thanks to the Listening and Talking Hands…. our network co-ordinator contribution of people and Barbara Miles pages 4-6 is in touch with them for organisations that support Deafblindness in Quebec city: an evolving issue the formal procedure to be us with their continued Danielle Cloutier & Lise Côté pages 7 -13 fulfilled. membership and by giving Whoever you are …the STAGE IS YOURS! There is really so many time to help us develop. My Grit Bethelsen pages 14-16 things happening or being sincere thanks. Changing horizons for people with Usher in the planned that it is only The Council meeting will 21st century Ronald Pennings pages 17-21 possible to mention a few take place in Kuala Lumpur Besancon and the work of Les Hauts Bregille of them. The Review reflects later in the year at the ICEVI Annick Crestin-Billet pages 22-24 our many activities. Deafblind conference. I hope to meet Light is heard in Zig Zag! International is growing and many of you there. Adina Tal pages 25-27 we are all aiming to make our Deafblind programming for a new era activities more encompassing William Susan Manahan pages 28-29 100 years of support for deafblind people in Potsdam, Germany EDITORIAL Katherine Biesecke page 30 Cherry Harvest I think this issue is our Ralf Herrmann & Katherine Biesecke page 31 largest yet – confirming the Let the two minds work together hard work and enthusiasm Ove Vedel Andersen and Henriette Hermann Olesen pages 32-34 of deafblind members, families and professionals CHARGE syndrome: dual sensory impairment, cognitive development and anxiety alike to share their ideas Christine Tap, Corinne Blouin, on a range of topics. We Charlotte Reau pages 47-49 have a number of well Chevreuse, the medical and researched articles including educational institute material that will extend our Jean-Marc Cluet pages 50-51 knowledge and thinking in Network News pages 36-41 both acquired and congenital – and another in our series of Regional News deafblindness in practical and articles about the importance theoretical ways. A clear and Norway and Bulgaria page 42 of aesthetic experience for comprehensive article about UK page 42 everyone, including those Usher syndrome, covering Colombia page 43 who are deafblind. the history of the condition, Russia page 44 In preparing this issue I as well as the developments Australia page 45-46 have the chance to talk to in genetic research up to Spain page 46 people I have never spoken the present day provides an to – by email of course – and Conferences and Holidays excellent update. Barbara bring their special stories Invitation to 9th European Miles also inspires us with her to a wider audience. Alfia Deafblind Holiday page 35 thoughts and practice in both Valiullina, (mother of Elvira) 14th World Conference in Perth, observing and using touch from “Omat” in Ufa in the Western Australia page 46 when working with children. republic of Bashkiria reports The European Holiday in Bulgaria page 52-53 We have two reports of how they moving forward Slovakia Conference Photo Album page 54-55 different types of service - with help and support from Helen Keller World Conference and development from Canada the Usher-Forum (Moscow). WFDB general Assembly page 56-57 – both rich in information and DbI members are very good Micellaneous demonstrating that meeting a working together! Contact CD ROM individual needs and involving Seasons Greetings! And Bernadette Van den Tillaart and people in their services is at keep those articles and stories Marleen Jannsen page 35 the heart of their thinking. coming in! Secretariat and Membership News We also have some fantastic arts events reported – with Report Eileen Sumitra Mishra page 58 the theatre featuring strongly Membership Form page 59 JULY – DECEMBER 2005 • DbI Review •3 ListeningSubhead hereand Talking Hands… Listening and Talking Hands… Barbara Miles is a consultant working in the United States and across the world. She is one of the founder members of The DbI Tactile Communication Network number of years ago the important part of my I may, for example, notice a thought occurred thought) they need also to a child reach her flat hand A to me which changed use their hands as eyes and out with sweeping motions, – and continues to change ears – as ways of getting scanning a table in front of – the way I interact with information and as a kind her. I see that she is “looking” children and adults who are of voice – as a primary way with her hands, using them deafblind. The thought went of expressing themselves. as substitutes for her eyes. like this: Many also use their hands as Moments later I may see her I, as a seeing, hearing ways to stimulate themselves pick up a cup she has found person, use my hands mostly – they may flap their hands and bring it to her lips – her as tools. I use my fingers or tap their heads, for hands are then acting as and thumbs to grasp things, example, seeking perhaps tools. Maybe I see her set manipulate things and hold to give themselves some of the cup down and use one things. (I am holding a pen the stimulation they miss finger to trace a texture on right now and using it to through their eyes and ears. the edge of the cup – again write. The pen, the tool, (I do similar things in less she is looking, this time in could be seen as an extension obvious forms, sometimes a very careful way. Perhaps of my hand.) tapping my fingers or she places her hand flat on Many, if not most, children twisting my hair or playing the table in front of her to and adults who are deafblind with a pen.) feel the vibrations of heavy need to use their hands as Realizing that a person who footsteps walking by – her tools, too, but (and here was is deafblind uses their hands hand has become an ear for for so many reasons, and a moment, feeling the sound.