Number 41 • January – June 2008 Enjoying books! eafblind International was formerly known D as the International Association for the A message from the Education of Deafblind People. DbI Review appears twice yearly, the two president editions are dated January-June and July- December. Dedicated to the memory of Mike Collins. The editor will be pleased to receive articles, news items, letters, notices of books and information on forthcoming events, such as conferences and courses, concerning deafblind children, young adults and older people. Photographs and drawings are welcome; they will be copied and returned. All written material should be in the English language and may be edited before publication. It should be sent for publication to arrive by the date below. Opinions expressed in articles are those of the author and should not be understood as representing the view of DbI. DbI Review is also available on disk. If you are interested in receiving your copy in this format, please contact: DbI Secretariat Post Box 9601 Janakpuri New Delhi – 110058 India [email protected] Fax: 91 – 11 – 25618430 ruly a great, gentle international level with Editor Eileen Boothroyd giant of a man. Many all organisations and of us still have a agencies within the field of Design T Geoff Dunn problem coming to grips deafblindness. As a matter of Distribution and DbI Membership with the loss of this dear fact, he was very active in the DbI Secretariat friend, even though he is creation of the Memorandum DbI Website certainly still with us in spirit of Understanding (MoU) Eileen Boothroyd and The Secretariat and reflected in many of our with ICEVI, and we are Editorial Office Sense activities and developments. finding practical areas for co- 101 Pentonville Road In fact, many of the actions operation. Following up from London N1 9LG under way have been this, recently, we have signed United Kingdom initiated or supported by an MoU with The World Tel: +44. 0845 127 0060 Mike. His contribution to Federation of the Deafblind Fax: +44 0845 127 0061 the well-being of deafblind at the meeting in Zagreb Email: [email protected] http://www.deafblindinternational.org children, adults and their of leading organisations families, our organisation in Europe of/for Deafblind Cover: Communicating at the Perth conference and membership has been of people. We investigated (Courtesy of Sense’s Foundation Inc.) huge importance. areas of communication, Mike has always insisted interaction and future upon the importance activities together. of collaboration at an The development of the LAST COPY DATE FOR THE NEXT EDITION: 20 October 2008 2 • DbI Review • JANUARY – JUNE 2008 strategic plan is well in Sense International, India, CONTENTS hand, the proposals have for undertaking a heavy A Message from the President page 2 been ratified, and people programme of work to have volunteered and been ensure a smooth transfer. Contents page 3 identified to carry out As always, we are extremely Articles the individual tasks to be grateful to our Networks, The importance of having “Good Taste” undertaken. I would like and in particular, the David Brown pages 4-7 to thank those who have organisation of the three Access to Literacy: books for all kindly offered their time major events taking place in Stuart Aitken and Paul Nisbet pages 8-11 and energy to ensure that the autumn, where I hope Deafblind International can many of our members will Australian Accommodation grow and develop. Mike have the opportunity for in Support System Trish Wetton pages 12-16 was instrumental in the depth discussions on priority first working group some themes. I hope to see many Brazil Forum years ago that was set up to of you there. Stan Munroe pages 26-27 investigate the thoughts and Another DbI activity which The UN Convention & Civil Society reflections of our members gives me special pleasure to Lex Grandia pages 28-29 on how they would like to invite you to is the European Using books with deafblind children see the future of DbI. This Conference planned for Brigitte Lastere and was a milestone and very September 2009 in Italy. I Ghyslaine Gimene pages 36-37 important to where we are have been living in Italy now “Education for All” Campaign today. for 20 years, and from past Larry Campbell page 39 The influence of our experience of international Working with the WFDB dear friend and colleague events organised here, I Ges Roulstone pages 40-41 can be felt in everything am sure that it will be an we are working on at the exciting and beneficial Network News pages 32-34 moment, but I would also experience for all. Country News like to mention some specific As a final note, as you Canada pages 18-19 developments in the last year without doubt know, Tony or so. Best is in the process of Australia pages 20-21 By the time you are leaving Sense for a new Ireland page 21 reading this, we are in the professional challenge. I am Romania pages 22-23 process of finalising the sure you all will agree with handover of the secretary me, in thanking Tony for his Scotland page 24 and secretariat functions, constant support for our Courses and Conferences we had two fantastic bids organisation. We wish him 7th European Conference page 17 for these really important well in all his endeavours roles. This made our choice and future. Somehow I have 7th Seminar of the Acquired extremely complicated and, the feeling we have not Deafblind Network page 25 after careful evaluation, it seen the end of Tony in our 1st European Festival of Specific was decided that Senses field, probably a new small Abilities of Deafblind People pages 30-31 Foundation, in Perth, corporate could emerge! Co-creating Communication Australia would be given the As always I would with Persons with Congenital task. We all look forward like to thank all of our Deafblindness page 35 to a fruitful relationship membership, network Publication with our new secretary and leaders, management secretariat. I would like to committee, council and all Meaning Making page 38 take this opportunity to who contribute so much Secretariat and Management thank Sense International in their leisure time, to Secretariat News pages 41-42 for the wonderful support our organisation and, in they have given to us over consequence, to deafblind Membership form page 43 the years. To ensure the people and the significant quality of transferring the others in their lives. office successfully, I would like to thank Sumitra and William Green JANUARY – JUNE 2008 • DbI Review • 3 The importance of having ‘Good Taste’ The importance of having ‘Good Taste’ The power to change the lives of persons with deafblindness around the world David Brown, from California Deafblind Services, continues his very successful series of articles about the senses and how they interact aste (the gustatory are distributed over the trigeminal nerve (the fifth sense) is the sense that epiglottis, the soft palate, cranial nerve) in the tongue T drives our appetite, and and the laryngeal and oral and the oral cavity. Facial also protects us from poisons. pharynx. The taste receptors palsy results from trigeminal The senses of taste and are sensitive to chemical nerve damage so is likely to smell are very closely linked, stimulation provided by involve some compromise to although stimuli through food substances dissolved the full and effective sense each of these senses travel in saliva in the mouth. of taste. We know that in by very different neurological Many nerves are responsible the population of children routes to reach the brain for transmitting taste with CHARGE Syndrome, for and provide information information to the brain, and example, about 43% have about environmental because of these multiple damage to this fifth cranial events and factors. Previous neural pathways a total nerve, which must present an visual, auditory and tactile loss of taste is very rare. additional, taste, difficulty to experiences can become Alongside distinctive and their other challenges with powerfully attached to identifying taste information eating and drinking. certain taste sensations and (for example, tastes that Infants experience taste memories, and can stimulate we might refer to precisely sensations before birth as strong taste anticipatory as ‘banana’ or ‘coffee’ or the first taste buds appear expectations. ‘Parmesan cheese’), there at about 8 weeks gestational The taste receptors, are less specific and more age, and a foetus sucks and located in small areas called generalised aspects of taste swallows up to 1 litre of taste buds, are distributed sensations (those responding amniotic fluid every day, so at throughout the mouth, right to stimuli from the skin the time of birth a functional down to the oesophagus. surface such as stinging, sense of taste is already The tongue has the most burning, and chilling) well-developed. Newborn of these receptors, about which can be induced by infants have a high level of 65% of them, but the rest many foods through the discriminatory taste because they have a great number Many nerves are responsible for transmitting of taste buds (about 7,000), “ and the number actually taste information to the brain, and because of continues to increase for a period after birth. But the these multiple neural pathways a total loss of effectiveness and the number of the taste buds decreases taste is very rare with advancing age, so that a ” 60 year old person probably 4 • DbI Review • JANUARY – JUNE 2008 The importance of having ‘Good Taste’ has only about 2,000 of them to dehydration, can suppress the Japanese for a long time remaining. You may have the effectiveness of the sense but has only recently been experienced older people of taste.