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 Ato 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. realizing how important their She may then reach toward hands are for them, I now where she supposes the interact differently. footsteps to be coming from, One thing I almost always in a gesture that seems to do now when I first meet say, “Come here!” or “Who a child who is deafblind is that?” – her hands at that (and also when I begin any moment became like a voice. interaction) is to notice their If she is left alone for some hands very carefully. I look to time, she may begin tapping see how they are using their her head with her fingertips hands at various moments. – this might be a way of When are they using their giving herself stimulation. hands like eyes? Like ears? Sometimes I cannot Like tools? Like voice? For differentiate the functions self-stimulation? It is not with my eyes alone. Just always easy to differentiate watching a child touch an these functions of hands object or another person may as the distinctions may be not let me know whether she subtle, but I have found that is really “looking” with her the more I practice making hands or whether she is just these distinctions, the better casually glancing, using her I can relate to a child through hands for self-stimulation the hands. rather than for getting information. If I offer my own

4 • DbI Review • JULY – DECEMBER 2005 Listening and Talking Hands…

“One thing I almost always do now when I first meet a child who is deafblind is to notice their hands very carefully” hands, however, then I can resonance with hers. We can for my hair!” Her teacher feel for myself the quality of make a conversation with our said, “It’s lovely!” The little her touch. My own hands can hands that can develop over girl said, “Wait! You didn’t listen and tell me whether time. We can take turns, we see it yet!” Whereupon the hers are genuinely receptive, can invent new movements teacher, realizing her mistake, or absent-minded, or eagerly – we can come to know touched the ribbon. Then the expressive. Sometimes when each other’s hands. Often teacher said, “Yes. It’s lovely.” I interact with a child’s hands with very young children, Only then did the girl smile. I close my own eyes for a few or with children who are The girl, of course, hadn’t moments so that I can better not yet curious about the felt the teacher’s hand touch concentrate on my own sense world of objects, this is a the bow so she thought of touch and so I can enter fine beginning point. It can the teacher hadn’t seen her tactile world for at least lead to building a trusting it. [Story from Peg Palmer, a short time. This practice in relationship and to a child’s BESB, Connecticut, USA.] interacting with the child’s gradual growing interest in Satisfactory conversations hands, while keeping in mind the world of objects outside between sighted people and these various functions of her own body. young blind or deafblind hands, improves my skill in Another very powerful children must initially include relating. gesture is what I might call mutual tactile attention. I There are several gestures “mutual tactile attention,” must touch many things that I use a great deal during which is the tactile equivalent along with a child in order the conversations that my of the pointing gesture so for her to know that I have hands have with the hands often used with a child who “seen” them. of a child who is deafblind. can see. “Look!” says father, There must be many One thing I often do is what I “A dog!” And he points to experiences of mutual have just described – I simply what they are both looking tactile attention in order for offer my hands to theirs at. This is a crucial step in language to have a mutual in a receptive way, usually language development reference. That touch, palms-up, under their hands. and must be replicated in however, is very delicate I have found that children the tactile mode for a child and requires much practice can tell when my own hands who is blind or who doesn’t on the part of teachers and are listening to theirs. If my use her vision for getting conversation partners. I must hands are open, flexible, information. touch without controlling, relaxed and alive, the child Mutual tactile attention and I must be sure that the nearly always responds by begins with noticing what child knows with her own either exploring or gesturing a child is paying attention fingers or body that I “see” or initiating a game. This to with her fingertips or the object, too, and that I see gesture is equivalent to hand, and then touching the details of the object in saying, “I’m here with you, along with her in a way that the way that the child does. and I’m listening carefully. lets her know that I “see” it Often this means moving my What do you have to say?” too. A relevant story comes fingers just alongside a child’s Who doesn’t like to be from a pre-school classroom fingers as they scan. Or it can listened to? where a four-year-old child, mean putting my fingers just When a child initiates a who was blind (and could under her last two fingers movement game with her speak), came to school one (not the first ones – they are hands, I can respond with day and said to her teacher, the ones that get the most my own movements, in “Look! I got a new ribbon information and I don’t

JULY – DECEMBER 2005 • DbI Review •5 ListeningSubhead hereand Talking Hands…

want to interfere with their looking together at the and shapes. Together we can perception) as she moves her world, just as it is for the learn to feel more and more whole hand. sighted child when a father the aliveness of everything I have been practicing sees his toddler looking at around us. this skill for twenty years, a dog and points, saying, and I still need to learn its “Dog! Look at the dog!” But what if a child subtleties with each new I can also invite the child’s cannot use her hands? child I meet. One key I’ve hands outward into the For a child who has little or found is to actually become world and encourage her no use of her hands, these interested in the particular sense of exploration. With my same principles apply. The textures and shapes that hand under the child’s hand, difference is that rather than interest the child. If I only which rests comfortably on looking to her hands for clues do this as a technique, and mine if I have been patient on how she learns about the not with genuine interest, in making friends with her world, I need to look at her children can usually tell, and hands, I can move my hand whole body. Perhaps it is either push me away or lose toward something I want with her feet that she learns her to touch (“see” with about things or people. Or her hand). I can touch and perhaps it is with her arms? explore the object or person Or with her face? In each of Touching together, we can myself, and the child can “ these instances, I must find a discover it for herself. If learn together and together way to make mutual tactile she is uncomfortable, she attention by making careful can pull away, as long as we can become respectful of contact with her in a way I leave her hand free. My that will let her know that I experience over twenty the world’s myriad textures “see” what she sees, however years is that a child, whose she sees it. The individual and shapes hands are respected with way of doing this will vary ” careful non-controlling from child to child, as each touch, becomes gradually child knows the world in her interest themselves. more trusting and curious unique ways. For each child, Once a child is accustomed about the world around her, the conversation partners to sharing mutual tactile more expressive with her need to be continually attention with me, and once hands, and stronger as an attentive to these unique she is comfortable with my individual. Our hands, after ways of learning and hands as an interesting and all, are agents of the self. continually seek ways to responsive part of her tactile They are ways of expressing explore the world together world, then I can “name” ourselves in the world and with the child. things we touch together. for blind and deafblind We can use gestures, signs, children they are also crucial Reference: speech, pictures, and objects ways of knowing the world. Barbara Miles, “Talking the – whatever symbolic modes Touching together, we can Language of the Hands to the are most comfortable and learn together and together Hands,” DBLink publications, accessible for her. Language we can become respectful of available at www.DBLINK.org can become grounded in the world’s myriad textures

6 • DbI Review • JULY – DECEMBER 2005 Deafblindness in Quebec city

Deafblindness in Quebec city: an evolving issue

Lise Côté, M. Ps. Psychologist and Danielle Cloutier, M.O.A., Audiologist

Specialised services for deafblind people in Quebec city (in the Province of Quebec, Canada) have been emerging since the 1980s. This article presents a description of this clientele whose characteristics and needs greatly vary. It addresses the impacts of deafblindness on life habits and the psychosocial consequences of this double sensory impairment. The recently revised services offered by the Institut de Réadaptation en Déficience Physique de Québec (IRDPQ) are also presented.

ver the course of the years and Oexperiences, deaf- blindness has shed its hyphen to become deafblindness. At first glance, this matter seems to be for purely linguistic sake. However, this modification demonstrates the evolution of the reality of deafblindness. Deafblindness has finally been acknowledged as more than the sum of its parts – hearing and eyesight loss. It is a distinct reality, recognized as such since the beginning of the 1990s. First row, from left to right, seated, Valérie Martel (orientation & mobility The Ministère de la Santé et specialist), Christine Lévesque (occupational therapist), Dieu Hanh Ton Nu (speech des Services Sociaux (MSSS therapist). Second row, from left to right, Danielle Cloutier (audiologist), Sophie – Health and Social Services Raymond (speech therapist), Jean-François D’Auteuil (specialised educator in Minister) became aware of deafness), Lise Côté, (psychologist), Paule Bédard (specialised educator in low the problems experienced by vision), Nicole Ruelens (manager), Nathalie Parent (clinical coordinator). Missing on deafblind people during the the photo: Jean-Paul Lachance, optometrist hearing impairment meeting held in 1986. Consultative Institut de Réadaptation impairment is small (between committees began their en Déficience Physique de 3 and 6 individuals out of work in June 1991 and the Québec (IRDPQ). It has the 100 000), yet it is a problem MSSS granted a development remit to set up services for that is specific and complex. budget to the Institut des the deafblind population of Sourds de Charlesbourg the Eastern Quebec region Definining (Charlesbourg Institute for (supra-regional mandate). deafblindness in the Deaf). This Institute The Deafblind Program is an Quebec city ultraspecialised rehabilitation is now merged with the When people with other physical impairment program of national caliber that is intended for a clientele impairment to the ocular rehabilitation centres of system also have auricular the Quebec City region and of all ages. The prevalence of this double sensory system impairment, they is known as known as the have a condition that is

JULY – DECEMBER 2005 • DbI Review •7 DeafblindnessSubhead here in Quebec city

known throughout the those that were developed • resides within the Eastern world as deafblindness This for people with exclusively Quebec territory; double sensory impairment visual or auditory disabilities. • presents both a visual (DSI) results in specific After having considered the and auditory disability disabilities that do not occur different definitions and whose origins are situated among people presenting taking into consideration the in the auricular, ocular impairment to only one Disability Creation Process or nervous system (note of these systems. The conceptual model (DCP, that other impairments Deafblindness Program exists 1998), the definition adopted may be associated with to respond to the unique by the Deafblind program of deafblindness); needs of these users, with IRDPQ is the following: • has a rehabilitation the assistance of specialised “Deafblindness refers to potential. clinicians, aids, strategies and the presence of impairment Depending on the data means that take into account to both hearing and vision. contained in the audiological the interaction between This combination leads to and ophthalmologic reports, the consequences of both significant deficits, given admission or orientation impairments on autonomy that neither of these two towards another resource is and social integration. senses provide reliable made known to the user. In The Deafblind International access to information the case where one of the organization describes and communication. following two conditions deafblindness as a condition These problems hinder is present, the persons are combining hearing and an individual’s learning automatically admitted to the eyesight impairments of capabilities throughout his program. varying degrees. Two sensory or her development, as well This would include: impairments multiply and as his or her current ability to • a diagnosis of Usher’s intensify the effects on accomplish life activities or syndrome, congenital one another, thus creating fulfill social roles”. rubella, Refsum or CHARGE a severe disability that (or other syndromes/ is different and unique. Admission criteria for conditions associated with People with deafblindness the Deafblindness deafblindness); are unable to use a sensory Program (fall 2003) • results of visual and modality to fully compensate auditory assessments the disabilities resulting A person of any age who: conducted by an from the other modality. • responds to the general ophthalmologist and an Consequently, their service admission criteria of the otorhinolaryngologist, as needs are different from IRDPQ;

Table 1: Most Perinatal diseases Hereditary causes External factors Combination of two independent causes common causes or factors of deafblindness S AIDS Head injury Macular degeneration Y Herpes Toxins related to age N Usher D Other traumatic CHARGE Encephalitis Pigmentary retinitis R origins Refsum O EYESIGHT Cataract M Waardenburg Congenital Glaucoma E rubella S Diabetic retinopathy Trisomy 13 Cytomegalovirus Retinal detachment

Congenital Presbyacousia toxoplasmosis Otitis and otosclerosis Meningitis HEARING Prolonged exposure to noise Hydrocephalus

Prematurity Barotraumas

8 • DbI Review • JULY – DECEMBER 2005 Deafblindness in Quebec city

well as responses to visual discrimination, decrease in common combination of and auditory stimuli of visual acuity, etc.) and age causes is presbyacousia and the environment that are at which these impairments macular degeneration. inconsistent. Impairment occurred are additional to the auricular, visual or personal factors that play Description of the neurological system must a fundamental role in the Deafblindness be medically diagnosed in portraits of individuals with Program’s clientele all cases. deafblindness. It has been possible to identify several Figures 1, 2 and 3 Referral procedure distinct profiles responding to describe the clientele’s the Deafblindness Program’s sociodemographic data as of - The user forwards his or admissibility criteria. These June 2004. It is comprised of her request him/herself or profiles resemble each other in 323 users, among which 64 via a healthcare institution terms of their diagnoses and % (n=207) are women. to the IRDPQ liaison office disabilities, but each individual (registration form to be profile calls for compensatory Figure 1 filled out); and professional services - The referring agency or user NB usagers = 323 specific to the life conditions must also forward to the and the multiple and liaison office : 27; 8% variable handicap situations 42; 13% Usher I • An oculo-visual assessment 14; 4% experienced, according to the Usher II (less than one year old); 37; 11% individual’s environmental SC acquise • An audiogram (less than context. one year old). SC cong. The profiles can be 203; 64% Autre ou classified into one of the diagnostic imprécis The variability following 4 categories: of individual • People with congenital characteristics deafblindness (or present Figure 2 associated with the before the age of two impairments and years). Congenital rubella NB usagers = 323 and Refsum syndromes 3; 1% disabilities are examples from a list To date, there are more than of around 150 hereditary 5; 2% 0-5 ans 150 causes of deafblindness 6-18 ans metabolic diseases. 100; 31% that have been identified. 19-65 ans • People with a congenital 172; 53% Table 1 indicates the most hearing disability to which 66-80 ans often mentioned causes of is added an eyesight 43; 13% 81 et plus deafblindness according to disability that has appeared the “Centre de Ressources after two years of age. Expérimental pour enfants Usher syndrome, for which Figure 3 et adultes Sourds-Aveugles 11 genetically different et sourds-Malvoyants” types have been identified Nb usagers = 323 (CRESAM). (Lorenz, Preising, 2002), is Bas St-Laurent (01) Depending on the Saguenay-Lac-St- the main cause. Jean (02) 4; 1% cause, there are multiple Québec (03) • People with a congenital 0; 0% 87; 27% combinations of impairments eyesight disability to which Mauricie Centre-du- to the ocular and auricular Québec (04) is added a hearing disability Estrie (05) systems. Moreover, these 12; 4% that appeared after two 197; 62% Montréal-Centre (06) conditions are often 7; 2% years of age (i.e. diabetic Côte Nord (09) associated with other 4; 1% retinopathy associated with 1; 0% Gaspésie Iles-de-la- impairments of varying Madeleine (11) occupational deafness). 11; 3% Chaudière- degrees. Disabilities resulting Appalaches(12) • People with acquired from impairments specific hearing and eyesight to deafblindness (decrease disabilities. The most in auditory acuity and

JULY – DECEMBER 2005 • DbI Review •9 DeafblindnessSubhead here in Quebec city

Deafblindness is a complex reality due to the combination of multiple factors. Here, we present an overall description of three main program user groups who receive specific programming because of their special characteristics and needs.

1) Users with congenital deafblindness This category is mainly comprised of children with multiple impairments that require the collaboration of interdisciplinary teams. Intervention by a third party The audiologist The consequences threatening place. is necessary to enable the working with of deafblindness: For example, they may child to perceive stimuli at a a client life habits and be caught off guard by distance, which is normally a person who suddenly possible through hearing psychosocial aspects addresses them and whose and vision. This intervention Our eyes and ears represent presence was, until then, favours understanding of our windows on the world. unknown to them; even oneself and his or her world With these two preferred more so if the they cannot through a stable routine. learning paths, sensory recognize his or her face or It promotes the learning information is continuously voice. For several people, of human relations and transmitted to our brain withdrawal may become a language, prerequisite to help us construct our refuge from such numerous conditions to a minimum of representation of reality. Each difficulties. When the person independence and control. minute of our life, we receive presents severe sensory Early identification of a phenomenal quantity of losses (profound blindness children with deafblindness information that is precious and deafness) and when is essential to effectively to our functioning. Deafblind others in the environment and efficiently respond to people must learn to live cannot present the world in their unique needs with with a significant privation of a comprehensible manner regards to learning, and to this information. Therefore, through communication ensure actualisation of their the simplest activities of strategies, orientation developmental potential. daily life become a challenge and mobility techniques, Intervention among this for them and require and environmental clientele must be creative, several adaptations. If the adaptations, the challenge developmental and environment is familiar to is insurmountable. transdisciplinary. Specialised them and they can exert Deafblindness may lead to assessment is conducted a certain control over the severe isolation and the by different professionals environment, they can live development of cognitive, who work together to within it with ease. However, emotional and behavioural identify the best means in unfamiliar places or when problems. In order to prevent of communicating and to faced with unexpected these consequences, early elaborate a stimulation changes and events, they intervention among this program favoring the child’s may feel their environment clientele and their living overall development. The to be an unpredictable and environment is essential. focus is placed on the users’

10 • DbI Review • JULY – DECEMBER 2005 Deafblindness in Quebec city strengths and involves family their visual abilities decrease as the diagnosis is made. and program clinicians in (moving away from home Furthermore, as adolescence the process of creating an to independence, school to or early adulthood is a intervention plan. working world, becoming critical adaptation period parent…). At each pre- and that this diagnosis may 2) Users with Usher diagnostic stage, a person represent the loss of all hopes syndrome with this syndrome will of accomplishment, the gradually become of aware of offer psychological support Among adolescents and difficulties without being able is recommended to favour adults, the most frequent to clearly identify the cause. adjustment and to be vigilant diagnosis associated with Several know that something in order to detect people deafblindness is Usher is not right and will begin presenting suicidal risk. syndrome (ref. : dossier to isolate themselves before As such, given the evolving Surdicécité). Although the the diagnosis: “I was always nature of the pathology, literature has identified a clumsy and awkward rehabilitation interventions 11 different types, we will person. I noticed that I was focus on regular and rigorous present the three most clumsy more and more often. monitoring by clinicians of common. Among deaf I hesitated to go out in the the interdisciplinary team. signing persons (Usher’s evening and I had several It aims to support the user syndrome type I), blindness cycling accidents. At the in becoming aware of represents a serious beginning, I thought it was changes in their abilities threat to their autonomy just stress, but I finally had a and limitations, and of the as communication and vision test…” The following impact of these changes adjustment to the world of elements are indicators on their functioning. This hearing people has rested, justifying referral for a vision step is crucial in order to since childhood, on their test: orient towards the search for visual abilities. For hard • the person does not always what best suits him or her of hearing people (Usher seem to perceive you or and to succeed in gradually syndrome type II), they can ignores you when you are adjusting to his or her count on, at least in part, close to him or her; situation. their hearing abilities to • he or she is indisposed by compensate their loss of backlight and complains of vision. However, even if their 3) Users with an glare; hearing level remains stable, acquired double gradual vision losses will have • has a tendency to trip sensory impairment over objects, has difficulty an impact on communication Due to the high prevalence moving around in dark and the accomplishment of vision and hearing losses places, and has an of life habits. Type III is with age, this is the group uncertain gait. distinguished from types I with the greatest number and II by a later appearance It is recognised that of users. Because these of deafness (postlinguistic) the earlier intervention losses progressively increase, and pigmentary retinitus. begins, better the general the problem is not often In terms of adjustment, adaptation of the user and recognized by the person. it is particularly demanding his or her family. As such, Changes in behaviour that are for the persons with Usher beyond transitional periods, indicators of sensory losses syndrome because at information, increasing may be falsely attributed each life stage, the person awareness, psychological to cognitive decline or will have to adapt to the support and interventions emotional problems. This presence of gradually targeting adjustment is even more so the case evolving sensory limitations. are necessary. This helps among elderly people as it is After having lived since to decrease ignorance, assumed that their abilities childhood, with deafness resistance to changes by are declining. The following and its resulting disabilities, certain users or their social are indicators justifying they are faced with new network, denial, or parental referral for a hearing or challenges to overcome as overprotection as soon eyesight test:

JULY – DECEMBER 2005 • DbI Review •11 DeafblindnessSubhead here in Quebec city

• a person who seems to deafblindness. These one’s daily life. confused; interventions enable the Deafblindness, even • a person who does not person to maintain his or more so than with other recognize familiar people; her personal and socio- disabilities, brings into play • a person who has difficulty residential autonomy, as well the individuals’ relationships finding or locating small as significant social links with with family and close objects; his or her natural support relations, as well as their • a person who does not network. capacity to remain in contact appropriately respond to with their environment and questions; The IRDPQ’s services in to act upon or with the reality surrounding them. • A person who seems relation to its partners We recognise the support disoriented. The team is comprised role played by family of a chief of service, and close relations in the a clinical coordinator adjustment process and and 10 specialists from their specific needs with different disciplines (vision regard to deafblindness. and hearing impairment They are essential partners specialists integrated into to attaining the intervention the same team) working as objectives. Significant people needed in inter and trans- and intervenor partners disciplinary way. In order to are invited to participate respond to the complexity in the development of the of deafblindness, the intervention plan. actions of these clinicians must be integrated with a Auditory The most frequent preoccupation for congruity Research and localisation in deafblindness diagnosis and completeness. The development assessment is a combination of basic principle of the Because we belong to a macular degeneration and intervention is also applied to health establishment that persbyacousia. These people relationships with the users’ is recognised that, as a often have several other close relations, the clinicians university institute and health problems related to from other rehabilitation dedicated to a clientele aging. The complexity of programs and network needing an ultraspecialised dealing with the reality of partners. Our intervention approach, we are involved two acquired impairments philosophy is essentially in the process of developing at an age where adjustment based on respect for the knowledge and know-how. capabilities have decreased characteristics and needs of Our services are constantly represents a particular specific clienteles. Despite evolving and propose novel challenge. It is important their severe limitations, the approaches or intervention to carefully target priority team believes in the potential tools to better respond to the intervention targets and of each user and his or her specific needs of people with to collaborate closely with capacity to develop at his or deafblindness. For example: their support network. This her own rhythm. Finally, due • assessment of auditory might be their family, CLSC to specific problems related localisation capabilities (ref: clinicians, day centre, home to accessing information and dossier surdicécité); care workers, physicians, communication, the user is • development of enlarged worker of an integrated often deprived of his or her hearing prostheses to services network for power to make decisions. facilitate teaching users elderly people. Moreover, Through our actions, we with a vision impairment intervention beginning early aim to promote free and how to manipulate them; on in the appearance of informed choice and to • development of tool to disabilities related to one facilitate self-determination increase awareness among or the other impairments in the accomplishment of close relations of people facilitates adjustment rehabilitation activities and in with sensory impairments;

12 • DbI Review • JULY – DECEMBER 2005 Deafblindness in Quebec city

• experimentation of a group decrease the handicapping We invite all potential therapy focussing life situations faced by these partners (regional transition among clients people. rehabilitation centres, with Usher’s syndrome type hospitals, CLSCs, integrated II; SUCCESS MADE service networks for • training and support for POSSIBLE THROUGH elderly people with loss of intervenors (program PARTNERSHIP autonomy, etc.) to contact us managed by the IRDPQ); in order to better identify the DEVELOPMENT • social integration support complementary services that We hope that this article group for people with we could offer. If we consider has convinced you that acquired deafblindness. the user’s viewpoint, services deafblindness services cannot would be satisfying if they be accomplished without the Role of expert council involve a combined effort, close connections between are facilitating (notably Clinicians from the clinicians of all disciplines and through identification Deafblindness Program the different collaborators of an intervention plan offer support to various within the user’s living coordinator), complete integration environments environment. For example, and appropriately targeted (CHSLD or intellectual ties with the specialised according to each individual’s impairment rehabilitation cochlear implant program priorities. While this expertise centre clinicians, day centers, have been developed to mandate is entrusted to us, it workplace, schools, family, facilitate the rehabilitation cannot be developed within friends), They work through process of deafblind people a vacuum. On the contrary, interventions within these with these implants. it can only be accomplished living environments, as well Furthermore, collaboration through continuous as tailored information or with genetic assessment exchanges focusing on training, enabling them to service of a hospital was the sharing of knowledge adapt their services to the created to better inform our and fruitful experiments specific needs of people shared users and to efficiently conducted in collaboration with deafblindness and to orient consultation requests. with outside contributors.

References Cloutier,D., Viger, M., Pilon, M., “PA2, Prothèses auditives agrandies: un outil convoité”, Différences, vol. 1, no 1, avril 1999, pp. 16-17. Cloutier, D., Côté, L., Levesque A., “De surdi-cécité à surdicécité, signe d’évolution”, Fréquences, vol. 14, no 4, août 2002, pp. 10-15. Dossier Surdicécité; éditorial et articles dans Fréquences, vol. 14, no 4, août 2002. Fougeyrollas, P., et autres, The Quebec classification: Disability Creation Process, 1998. Lorenz, B., et Preising M.,“Usher Syndrome” Orphanet Encyclopedia, mars 2004, pp. 1-8. (http://www.orpha.net/data/patho/GB/uk-Usher.pdf)

Start preparing for the World Conferences in 2007...

Deafblind International 14th World Conference Perth, Western Australia 25-30 September 2007

JULY – DECEMBER 2005 • DbI Review •13 DanishSubhead theatre here project

Whoever you are… whatever you are… the STAGE IS YOURS!!!

This is an account of the Danish theatre project “Breaking the Silent Dark” which was developed for presentation in Slovakia this summer.

Grit Bethelsen sets the between The Deafblind we didn’t have any specific scene: Centre, Årlborg and knowledge or experience Limfjordsskolen, Løgstør. This with deafblind persons. We Be aware of the danger co-operation started in 2003 did not know sign language, – who will get nervous? with theoretical discussions but we were willing to We are all aware of the concerning aesthetics, and communicate, to inspire and risk of inviting ridicule, but one of the results was that be inspired by the deafblind we are attracted by the we agreed to do some performers and be jointly adrenalin buzz, the heat of practical work! creative and innovative. the spotlight, the sense and The present theatre group The 4 performers took “smell” of a large audience was founded in spring the challenge too, exceeded and, last but not least, the 2004, and comprises 4 born limits and accepted that hilarity and exhaustion of deaf-blind persons, 4 staff working in the theatre success. Once the curtain members from The Deafblind demands concentration, rises, we feel at home on Centre, functioning as discipline, timing and the stage, even in Slovakia it supporters and interpreters, responsibility. They is a very new and different and my colleague and me experienced being a part experience. from Limfjordsskolen. We of a theatre group, where have skills in instruction and everyone is needed and Who Are We? light and sound, and have indispensable. They dared to We are the people behind been offering art and theatre discover new horizons. the performance “Breaking courses since 1989, primarily The first performance, the Silent Dark”, which is to disabled adults. We took “Humans in backlighting”, the result of co-operation the challenge even though which toured in Denmark

14 • DbI Review • JULY – DECEMBER 2005 Danish theatre project

and the Netherlands, opened Diary of a Theatre theatre. But the stage looks our eyes and gave us “inside Production strange – a known backstage information”, that enhanced The project started at the end – an unknown stage, full of the possibility of formulating of May, and we only had 8 corrugated paper, silk scarves individual parts in the second full working days, including and bells! There is a call performance. a final rehearsal. Normally for the folding rule and we The aim of the theatre we have at least 7 weeks to start with common drama group is to ensure that produce a play! We were exercises and explanation deafblind people become lucky to know the actors in through the interpreters. more visible and get the advance. opportunity to contribute Day 2 ..then improvisations to society by generating Day 1 – what is going to happen? experimental and symbolic The sound of 2 wheelchairs This performance is intended theatre, where individual reaches us from the long for an international deafblind expression and natural corridor, which leads to conference at Presov movement form the basic the theatre room. The 4 in Slovakia. Before this elements. Each part of performers are coming. They conference a presentation the play is the result of are energetic and eager is planned in a village near improvisation and mutual to get started, in spite of Kosice, where a deafblind inspiration, during which, a one hour tiring bus ride. centre will open next year, the process of production For the sake of confidence but the village inhabitants crystallises as “sublimates” of and recognition, we have have neither seen nor met the individual’s resources and chosen to use the same a deafblind person! Having abilities. backstage as in the previous a lot of hard work ahead of Although innovation and play which turned out to us, we are under extreme inspiration are indispensable, be a good choice. Heavy time pressure, so, in order all performers must know eyed, like early risers, the to preserve the group’s their part by heart when 4 performers immediately confidence, it might be the play is presented to the start to take shoes and necessary to re-use, with public. socks off. The “Barefoot slight changes, a number Company” has sensed the of scenes from our last

JULY – DECEMBER 2005 • DbI Review •15 Danish theatre project

performance. Despite that, rule is still a wonder, what and the Priest in the village we continue experimenting is he measuring? The at Kosice announced our and improvising. Once two performers start to performance during the noon again we are reminded that communicate and inspire Mass. The theatre hall, an old theatre demands discipline. each other. What can be post office, was crowed in The rules are accepted and measured? the afternoon heat. it shows very quickly that In a production, where the “deafblind world” is hopefully the performers’ Our first public not necessarily slow. The capacity for expression is presentation activity level is very high and being respectfully expanded, From now on is it up to the everybody is in the right the cumulative life experience audience to “measure” – to place at the right time. The of the individual performer judge the artistic experience aim this time is to create determines pace and timing. and quality. The result… more scenes, where the Is it possible to be “incorrect” this audience was moved deafblind actors are more in personal expression or and touched to tears and all independent of support – the movement in connection expectations were surpassed. ideal is no supporters at all. with drama production? On the 3rd day a draft manuscript is prepared. The Finally …the light and What are we sequences are structured sound measuring? and a preliminary description These two techniques If one of the results of of the individual scenes is enhance the look and doing this work is frontier- prepared. During the process, expression of the performer exceeding acceptance and notes are revised according and the atmosphere. respect for a very fragile to new input/inspiration However, light or sound group of people in our from the performers. The should never overshadow or society, this could be an group is alert and aware kill the sentiments expressed. extraordinary good reason of the challenge – even Our final rehearsal … for creating theatre, if not subtle hints are quickly caused blushing cheeks and the only one. caught. All possible types butterflies in the stomach, The audience measured of communication are used and all this nervousness flew the performance, and they – parallel acting, rolling along with us to Slovakia! All loved it! on the floor, verbal sign of a sudden it was Sunday, instruction e.g. the folding the day of our performance,

16 • DbI Review • JULY – DECEMBER 2005 Genetic research in Usher syndrome

Changing horizons for people with Usher in the 21st century Clinical and genetic research in Usher syndrome

The eleventh Usher Study Group was held this year in Pre˘sov in Slovakia for two days after the 6th DbI European Conference on Deafblindness. This article is a summary of the presentations by keynote speaker Dr. Ronald Pennings from the department of Otorhinolaryngology, Radboud University Medical Centre in Nijmegen, the Netherlands.

Historical perspective with hearing impairment work already had been of the development were conducted and it was published in 1866, it was of research in Usher noted that in many cases relatively unappreciated until the hearing impairment the beginning of the 20th syndrome was accompanied by century. Ronald Pennings In the second part of the other disorders such as Arthur Hartmann, a 19th century, the first reports ophthalmological diseases, German otologist, was on hereditary causes of mental retardation, one of the first to describe deafness and blindness were epilepsy and polydactyly. an indirect (recessive) published. One of the first Liebreich, another German inheritance pattern of pioneers in research into ophthalmologist, performed hearing impairment in deafness was Sir William systematic examinations his book on deaf-mutes Wilde, an Irish otologist. on a large group of 341 published in 1880. A In 1853, about a decade deaf inhabitants of Berlin. chapter on deafness and before the introduction of The proportion of retinitis blindness again accurately Mendel’s laws, William Wilde pigmentosa in this group stressed the combination was the first to describe of deaf persons was high, of profound deafness and autosomal dominant and remarkably, even higher retinitis pigmentosa and its inheritance of hearing in consanguineous Jewish relation to consanguineous impairment in Irish families. families. marriages. He also In 1857, Donders, the famous At that time, Gregor emphasised the difficulties Dutch ophthalmologist, Johann Mendel, a monk and in educating individuals described the bone spicule biologist from Brno who with visual as well as formation we now know performed studies on pea hearing impairment and as retinitis pigmentosa. pod plants, published his promoted the oral method Alfred Graefe was the first “Versuche über Pflanzen- for the education of hearing ophthalmologist who noticed Hybriden”, which later impaired individuals, the combination of deafness became the basis for the which at that time was and retinitis pigmentosa establishment of modern not generally accepted. In in 3 related persons and genetics. In this work he 1919, De Wilde was one suspected a hereditary proposed the principles of of the first Dutch doctors cause. His uncle, the famous heredity and introduced the who reported on individuals ophthalmologist Albrecht concept of dominantly and with a combination of von Graefe, described these recessively inherited genes hearing impairment and three cases in his scientific to explain how characteristic visual impairment in the journal in 1858. During features can be repressed in Netherlands. He concluded the 19th century, the first one generation, but appear that 38 of 167 (22%) large studies of populations in the next. Although his Dutch people with retinitis

JULY – DECEMBER 2005 • DbI Review •17 SubheadGenetic research here in Usher syndrome

in 1914. In this book he only by Hallgren in 1959 and briefl y mentioned that 19 Nuutila in 1970, comprised of 69 people with retinitis nationwide evaluations of pigmentosa to some degree Usher syndrome persons had hearing impairment. in Sweden and Finland, After his presentation in respectively. 1935 of the Bowman Lecture Hallgren was the fi rst to “On a few hereditary eye report on the prevalence affections”, in which several of Usher syndrome; it was families with eye disorders estimated to be about 3 were presented to a large per 100,000 inhabitants. group of scientists, his name This estimate was based on became an eponym for the his study of the Swedish syndromal combination of deaf population and on Charles Howard Usher retinitis pigmentosa and the international literature hearing impairment. This is available at that time. At pigmentosa also suffered very remarkable, because in present, the prevalence from hearing impairment; his Bowman lecture he did of Usher syndrome is 13 of them had been born in not mention the association estimated to range from consanguineous marriages. of hearing impairment 3.5 – 6.2 per 100,000. It The syndromal combination and retinitis pigmentosa. accounts for about 3-6 % of hearing impairment and Regarding history, it should of the congenital types of retinitis pigmentosa was have been more appropriate deafness, about 18% of the fi nally named after the to name the syndrome pigmentary retinopathies and Scottish ophthalmologist after Alfred Graefe or after over 50% of all persons with Charles Howard Usher (1865- Liebreich. deafblindness. 1942). He was born 7 years In the past century, the Already in 1922 Julia Bell, (!) after the fi rst description studies of Usher syndrome one of the fi rst prominent of deafness and retinitis were conducted from female geneticists, was pigmentosa in a person two clinical perspectives. the fi rst to report on a and two of his siblings by The studies by Usher, difference in the degree of Albrecht von Graefe. Charles Bell, Nettleship, Von hearing impairment in Usher Usher was the fourth son Wibaut and Kjerrumgaard syndrome. She emphasised in a prominent Edinburgh were performed from an that there were two groups family. After studying at ophthalmological perspective, of persons, one in which Cambridge University he got i.e. data on groups of hearing impairment was his medical degree at the St retinitis pigmentosa persons profound and a second one Thomas Hospital in London. were collected and it was in which the persons suffered He was very dedicated to his evaluated for how many from a moderate to severe work and spent much time of them also were hearing type of hearing impairment. on performing extensive impaired. The studies Hallgren, in 1959, suggested family studies, especially in performed from an otological that these two clinical types the Highlands of Scotland. perspective merely focused of Usher syndrome might Infl uenced by his mentor on the examination of large be caused by two different Edward Nettleship, an groups of deaf persons genes. In his studies, eminent ophthalmologist attending schools for the Hallgren also described of that time, he decided deaf, who in addition had psychiatric problems in to study a population of retinitis pigmentosa. In three people with Usher syndrome visually impaired people. The Scandinavian countries, and for some time this was results of these elaborate Norway, Sweden and regarded as a separate studies were described Denmark, examinations type of Usher syndrome, in his book entitled ”On of large groups of deaf which was referred to as the inheritance of retinitis individuals were performed Hallgren syndrome. To date, pigmentosa, with notes of on a national scale and psychiatric illness is no longer cases”, which was published two observational studies, defi ned as a key feature in

18 • DbI Review • JULY – DECEMBER 2005 Genetic research in Usher syndrome

Table 1. Original clinical classification by Davenport and Omenn (1977); adjusted to recent findings.

HEARING IMPAIRMENT VISUAL IMPAIRMENT VESTIBULAR FUNCTION

Severe to profound Usher type I RP* onset before puberty Vestibular areflexia congenital deafness

Moderate to severe Usher type II RP* onset after puberty Normal/variable hearing loss

Usher type III Progressive hearing loss RP* Variable

*RP: retinitis pigmentosa. any of the known types of is characterised by high- not experience the disease Usher syndrome. frequency sensorineural itself. All DNA is stored in Whereas Julia Bell already hearing impairment, retinitis 46 chromosomes (23 pairs) emphasised the clinical pigmentosa and an intact located in the nucleus of all heterogeneity of Usher vestibular function on cells. On these chromosomes, syndrome in 1922, several testing. Usher syndrome 30,000 genes are located. other studies also reported type III is mainly seen in Every gene contains a code on the variability in clinical the Scandinavian countries to develop a protein that features. In 1977, this and is rather rare outside has a specific function in the finally led to the original these areas. It is known for body. In Usher syndrome, the classification described its progression of hearing genes encode proteins that by Davenport and Omenn impairment which is variable have a specific function in the (Table 1, adjusted to in onset age and degree. In retina and in the inner ear. recent findings). Although addition, a variable vestibular When two mutations in the mental retardation and function and retinitis same gene are identified in psychosis at that time were pigmentosa is seen. one person (one from father suspected to be part of Usher syndrome is an and one from mother), the the syndrome, Davenport inherited disease that genetic code to process a and Omenn decided to shows autosomal recessive normal protein is disturbed exclude these features from inheritance (Figure 1). This and this leads to dysfunction the classification, because means that the parents of the protein that results they regarded them to be of the person with Usher in hearing impairment and secondary to the inherent will be carriers of a gene retinitis pigmentosa. double sensory deprivation. mutation, although they will

Usher syndrome, types and subtypes Figure 1 Autosomal recessive inheritance. Usher syndrome is Hearing Hearing characterised by hearing Both parents are carriers of impairment, retinitis 1 gene mutation, however, pigmentosa and in some they are NOT deaf. Only cases vestibular impairment. the daughter on the far On the basis of clinical left becomes deaf because characteristics, it can she inherits both gene be divided into three mutations from both clinical types (Table 1). parents. Two children are carriers and one child (boy Usher syndrome type I is on the right) is not a carrier. characterised by profound These last three children congenital deafness, are all normal hearing retinitis pigmentosa and an individuals Deaf Hearing Hearing Hearing absent vestibular function. Usher syndrome type II

JULY – DECEMBER 2005 • DbI Review •19 GeneticSubhead research here in Usher syndrome

In the past two decades of Usher syndrome. The for fast and cost-effective genetic research in Usher otorhinolaryngologist mutation analysis. This is a syndrome has revealed examines hearing and very important development that Usher syndrome is a vestibular function. The because through this chip, all heterogeneous disease. At ophthalmologist examines currently known mutations in first, it was believed that the visual function and all different Usher syndrome each type of Usher syndrome the clinical geneticist gives genes can be tested. This was caused by mutations in the individual with Usher way, a genetic diagnosis one specific gene. However, syndrome and his family has become much more research in the last decade genetic counselling and may accessible for people with has shown that these three arrange genetic analysis Usher syndrome. clinical types can be divided when requested. into several genetic subtypes Most persons with Usher Recent developments (Table 2). Currently, 5 of the 7 syndrome will be born in genetic and clinical genes known to be involved with sensorineural hearing studies in Usher syndrome type I impairment. Later in life have been identified. Also, the diagnosis of retinitis In the past 20 years, 2 out of 3 genes in Usher pigmentosa will be added. knowledge about the genetic syndrome type II and the Table 3 shows the different causes of Usher syndrome responsible gene involved types of examinations that has increased. At that time it in Usher syndrome type III is can be performed by the was believed that the clinical also known. different professions in types of Usher syndrome persons recently diagnosed were all caused by mutations Clinical diagnosis in with Usher syndrome. in 1 gene each. Currently, however, already 11 loci Usher syndrome This table does not show a complete overview of and 8 genes have been To establish a diagnosis all available examinations, identified to play a role in of Usher syndrome in a however, the most important the development of Usher suspected individual, several examinations for establishing syndrome (Table 2). examinations are necessary the diagnosis are shown. Recent genetic studies to come to a clinical as well Recently, the Usher syndrome mainly focus on the as a genetic diagnosis. A micro-array became available identification of new genes, multi-disciplinary approach is essential because several professions deal with the various symptoms Table 3. Examinations to establish a diagnosis in a person with Usher syndrome.

OTORHINO- Table 2. Genetic subtypes of Usher syndrome. OPHTHALMOLOGY CLINICAL GENETICS LARYNGOLOGY GENETIC TYPE GENE CHROMOSOME SUBTYPE Main examinations Usher type I USH1a - 14 Medical history Medical history Medical history Otoscopy Slit-lamp examination • Type of inheritance? USH1b MYO7A 11 Tuning fork examination Funduscopy Blood sample for DNA USH1c USH1C 11 Pure tone audiometry Visual acuity DNA-diagnostics USH1d CDH23 10 Speech audiometry Goldmann perimetry • Linkage analysis USH1e - 21 Vestibular testing Electroretinography • Mutation analysis USH1f PCDH15 10 Electro-oculography • Usher micro array USH1g SANS 17 Additional examinations

Usher type II USH2a USH2A 1 BERA Colour vision testing Genetic research OAE Dark adaptometry USH2b - 3 Fundus photography USH2c VLGR1 5 Optical coherence Usher type III USH3 USH3 3 tomography

20 • DbI Review • JULY – DECEMBER 2005 Genetic research in Usher syndrome

on the function of the related to develop some kind of general showed that both the visual acuity proteins and interactions between prognosis of the deterioration of and visual field size deteriorate the proteins. Genetic studies have vision and hearing for a specific in all three genetic subtypes; i.e. shown that all currently known genetic subtype. This prognosis can Usher syndrome is a progressive Usher syndrome type I proteins be useful for counselling. retinal disease. No statistical interact in the cohesion of the differences could be identified stereocilia on the hair cells of the 1. Hearing impairment between USH1b and USH2a or inner ear. The knowledge of the studies USH3, however, there was a function of the Usher syndrome statistical significant difference Persons with Usher syndrome type proteins is developing rapidly. between the functional vision score I in general are born profoundly With increasing knowledge in USH3 and USH2a. USH3 persons deaf and have a disturbed speech the possibility of a therapeutic experience an earlier onset of a language development. These approach will be coming nearer, similar degree of deterioration of people benefit a lot from cochlear however, currently there still is no visual function when compared implantation, especially at young cure or therapy available for Usher to USH2a, i.e. USH3 persons have age. Hearing impairment in Usher syndrome. Future therapeutic a similar deterioration of vision syndrome type II in general is approaches focus on gene that starts at an earlier age when characterised as high-frequency therapy, stem cell therapy and the compared to USH2a persons. In sensorineural hearing impairment development of drugs that interact these studies also a big difference that can be treated well with with the underlying pathogenetic in visual function was seen hearing aids. In USH2a, slight mechanism. In addition, retinal within the genetic subtypes itself, progression of hearing impairment implants are being developed in unrelated to the type of mutation can be seen. This is quite order to achieve similar results involved. This variability can comparable to the deterioration for vision as is seen with cochlear even be observed within siblings of hearing related to presbyacusis implantation in profoundly deaf with the same mutation and in normal hearing individuals. persons. environment in which they grow However, the progression Recent clinical studies up and so far no explanation can noticed in the low frequencies have analysed the visual and be given for this phenomenon. It is significantly more severe than audiometric function of specific therefore remains difficult to give seen in presbyacusis. USH3 is genetic subtypes of Usher an individually based prognosis mainly known for its progression syndrome. The Nijmegen Usher of the deterioration of vision. of hearing impairment. There is a syndrome studies started at the Therefore, only in general terms lot of variation in onset age and beginning of the 90’s of the the deterioration of vision can be degree of impairment, however, previous century under direction described during counselling. in general the hearing impairment of Cor Cremers. Persons with is much more progressive and is USH1b, USH1d and USH2a mainly Dr. Ronald Pennings more severe than is seen in USH2a have been examined because of Dept. of Otorhinolaryngology and may resemble USH2a at young high prevalence. Mutation analysis Radboud University Nijmegen age and USH1b at higher age. results were established through Medical Centre close collaboration with our own P.O. Box 9101 otogenetic laboratory (Hannie 2. Visual impairment 6500 HB Nijmegen Kremer) and the Centre for the studies the Netherlands Study and Treatment of Usher In general it is thought that Usher [email protected] syndrome (Bill Kimberling, Boys syndrome type I has a more Town National Research Hospital, severe visual impairment than References used for this Omaha, USA). In collaboration with Usher syndrome type II. In order manuscript are available upon Finnish researchers (Eeva Marja to evaluate and compare the request. Sankila, Leenamaija Kleemola), visual function between USH1b, the audiometric and visual USH2a and USH3, a functional characteristics of USH3 persons vision score was established based have been re-examined and these on visual acuity and visual field results were compared to those size (according to the American obtained for USH1b and USH2a. Medical Association Guides for The general aim of these studies is Visual Impairment). Analysis

JULY – DECEMBER 2005 • DbI Review •21 FranceSubhead here

Besançon and the work of Les Hauts de Bregille

Annick Crestin-Billet writes in our series of articles about the development of servcies for deafblind children in France

n the East of France, d’Enseignement Spécialisé Was it by mere chance that Besançon, in Franche- pour Déficients Visuels” (The Murielle and her parents IComté, is a medium-sized Regional Education and arrived first? These parents town of 140,000 inhabitants. Special Education Centre for were exhausted by caring On a hill, near the town Visually Impaired Children) for their little 4 year-old girl. centre, “Les Hauts de Bregille” and is managed by the At night, as well as during is home from home for 26 association “Les Salins de the day, in spite of being multi-disabled children. Bregille”. deaf and having only a The ground-floor structure The premises are new, but small amount of vision left, is welcoming and, inside, this service was created in she was standing up on a warm colours play with the 1978, and some of us were wardrobe, balancing! Only light. With wide halls, single already here on the morning the rays of the sun seemed bedrooms, 4 boarding units, of the first school day, to to mean something to lively classrooms, educational welcome 8 multi-disabled her, and she was endlessly workshops, re-education blind or visually impaired waving her long and nimble rooms... everything has children. It was our first fingers in front of her eyes, been designed perfectly for meeting with these very forming arabesques. Murielle children with difficulties. This dependent children, but had already had several big house opened in 2000 we were inspired, seeking operations, including heart and belongs to the “Centre Utopia, and highly motivated and cataract. Now, she was Régional d’Education et to begin this long “story”. rejecting her hearing-aids

22 • DbI Review • JULY – DECEMBER 2005 France

Some of the team and seemed to be lost in But the team has come a These youngsters with a world of sensations – so long way together. After the dual sensory impairment fragile, but so determined necessary training sessions do not use many of the – having no language, but so with Jacques Souriau – our “communication codes” expressive. Progressively, she theoretician – we did some – objects, symbol-objects, appropriated the space near research on body dialogue miniatures, pictograms, the windows and explored and dance therapy with Dr raised lines, Sign Language – the furniture in order to climb Benoît Lesage, and, more but in emergency situations, on it. How could we win her generally, we worked on they all know how to tell us over, create links, be allowed sensory stimulation using – and show us – that they to sit closer everyday? How the Frolich method. Today, understand their meaning could we make friends? our experience has enabled and usefulness. We looked for help from us to use these educational Apart from a long process the deaf world, but the real techniques, but with some of teaching in “awakening” answers came from Poitiers adjustment. We had to give classes, the teacher’s – Jacques Souriau knew up on Utopia on the way, permanent and creative deafblind children so well. but we are still looking for a research results in a “book”. Today, “Les Hauts de Bregille” “tuning”. In this book everyone records still has a particular affection So, when I observe how the story of their life: their life for children with dual sensory these children live, and as a baby, a much loved baby, impairment and our we have while I am thinking before then the child, then to the 6 children who share daily writing these few lines, I present teenager, now facing life and space with other feel proud and grateful puberty before he becomes a children who have more or about this multidisciplinary man, like his father. less disabling cerebro-motor educational team. I don’t feel impairment. any “wearing out”, but I feel After Murielle, other an obvious vitality, which is deafblind children came: re-activated whenever the Maxime, Patrick, Michael, smallest skill emerges. Of Elie, Frederic, Alexia, Yohan, course, there are periods of Meryem, Manuel, Elodie, doubt and discouragement, Yann. Today, in the “Tangerine there are periods that seem Service”, we still have 6 so long, then, suddenly, deafblind children who live in something just clicks into the boarding school during place... Why? That’s the the week. secret of shared life – spring after the coldness of winter!

JULY – DECEMBER 2005 • DbI Review •23 FranceSubhead here

“These children benefit from the dynamics of the Institute, and sometimes they are amazing in unexpected situations”

The importance of daily was Mathieu‘s problem, serenity for this known and life experiences that allow with pencils, paper and recognized hand that is for exceptional things to pictograms. These deafblind offered to them. Manuel, happen is recognised. These children go out a lot; they who is sometimes so faraway, children benefit from the take part in every party at will not be a contradiction: dynamics of the Institute, and the Institute. They like to in the evening, before dinner, sometimes they are amazing dress up and dress up their he takes down the 6 young in unexpected situations. teachers, they invite people peoples’ coats from the coat Manuel is roller-skating like in and have days out with the rack and carefully spreads Sonia; Meryem likes sledging educational team. them on the floor... yes, they and roars with laughter in Increasingly, and in spite of are all here... they are back: the snow; Catherine goes to serious personality disorders he can eat in peace. another unit during week- with sometimes violent They are deaf, blind, ends, but this is no problem expressive outbursts, they partially sighted, or hard because her electric fan is put are less and less frightened of hearing, but they exist, in a strategic place enabling inside and outside the no, they live, with a feeling her to find her bedroom! establishment. They do not of belonging to the human Sometimes they meet hesitate to go out together race, because of this group. children in electric chairs: in the neighbourhood, all six They have access to a form they have ignored each of them. Every Wednesday, of freedom, with the ability other for a long time, in the evening, they are in to go and “see” what the then progressively they a structured and organized outside world is like. touched and discovered a service, where they can As a conclusion, for these child without speech, like settle and rest, with their young deafblind people, this them, but who seemed landmarks and rituals. They is a real life project, a life with immobile. And Manuel have the situation under other people, with positive wanted to understand what control and they have a support. smile, an expression of

24 • DbI Review • JULY – DECEMBER 2005 Israeli Theatre

Light is heard in Zig Zag

“Light is heard in Zig Zag” – a production by Nalaga’at Theatre Company, Israel

Adina Tal, Theatre Director and Actress explains When Eran Gur, a former business man, and I met and established “Nalaga’at”, 3 years ago, we did not believe, even in our wildest dreams, that this article would be written less then 3 weeks after coming back from our third international tour within a little more than a “Leave me alone, I we work in our rehearsals, year! do not want to see and showed a short video Neither of us had any deaf-blind people on about the group working and background with deafblind performing. people and I had never stage, I have my own After the presentation even worked with disabled problems” Steven Rothstein, President people but when, by pure Yes, this was a very typical of Perkins School for the coincidence, I began to work reaction when we first Blind approached us and said with a group of deafblind started to run the show. But “you really should bring this people I very soon decided soon it changed. The show show to North America”. We that this will not be “just was very well received. We thought that this was a great another Drama Class. got great press and television idea. At first, making theatre, coverage, played full houses which is the art of all over Israel – more then June 2004 communication between 40 performances – with12 After a month of arduous the actors and the audience, deafblind actors giving the preparation, the Nalaga’at’s with a group of people, hearing and seeing audience North American tour finally for whom communication the gift of art. became reality. The tour is their biggest problem, group included 32 people; seemed almost impossible. Next stop: 12 actors, 12 interpreters, 4 However, we found ways to DBI conference in assistants (including light and work together as a group sound technicians and yoga and created a play based Mississauga, instructors), 2 cameramen on their reality, and their Canada 2003 and Eran and myself. dreams – dreams of being a I could not believe my eyes, We produced 8 famous singer, driving a car to meet so many people from performances in English and just being able to go into so many different countries, of “Light is heard in Zig a supermarket and see the all of them working with Zag” in Toronto, Montreal, sell-by date. Many vignettes, deafblind people. I was Boston and New York. The some of them sad, some of very nervous when I gave a shows were all sold out. them with a lot of humour presentation of our work. I The high-point of the tour – this is the stuff that “Light made the participants tap on was the performance at the is heard in Zig Zag“ is made each others’ knees so they Symphony Space, on off- up of. could get an idea of how Broadway, Manhattan (800

JULY – DECEMBER 2005 • DbI Review •25 Israeli Theatre

seats), with a fifteen minutes perform in New York with proud to have the people standing ovation at the end such a great success” from the television in his bar of the show. After every Joe McNulty, Director of and invited all of us for a show the audience met with the Helen Keller National nightcap! the actors and a lot of them Center, New York. In addition to the shows, I asked for autographs and gave joint theatre workshops souvenirs. The shows received for deafblind Americans with generous coverage in the our actors as my assistants. Press was good! press, on radio and television. This was an incredible “Today we are celebrating After the first show in experience and I hope that the 100th anniversary of Toronto we sat in a local this was just the beginning. Helen Keller’s graduation bar and all of a sudden we from University. I am proud heard familiar sounds from Back home again to participate in an evening the huge television. It was When we came back home that will be celebrated 100 a scene from the show in to Israel we started to years hence: a performance the late night news! The rehearse a new production. of Nalaga’at in the United owner of the bar was very As our actors live all over States” Israel we can only afford Steven Rothstein, President one rehearsal a week, so of Perkins School for the we decided to have a 4-day Blind, Boston. theatre workshop, to give other artists a chance to work “Helen Keller had with the group. We worked tremendous imagination with musicians and Circus and foresight, but I don’t people and they are still think even she could have working with us on our new imagined that in 50 years production. time a deafblind theatre company from Israel would

26 • DbI Review • JULY – DECEMBER 2005 Israeli Theatre

Who said that the Swiss are cold and reserved? I myself was born and grew up in Switzerland, I have lived in Israel for over 30 years now, but still, it seemed natural that Switzerland would be our next stop. It all began with a few meetings with old friends and soon became like a giant snowball and at the end of March 2005 Nalaga’at left for its second international tour, in made cheese and, of course, Back home Switzerland. ate Fondue. We had a great year, but When we left Switzerland we also know that this is a March 30 – April 14, we all felt as though we were Cinderella story. There is so leaving a lot of new friends, 2005 – Tour in much that should and must and the official “Swiss friends Switzerland be done, so many more of Nalaga’at” was founded. deafblind people here in The Swiss Premiere was Israel still living in complete scheduled to take place in And then New York silence and darkness. We the most prestigious theatre again! are working hard to open in Switzerland – Zurich’s We actually did not plan the Nalaga’at Centre next Schauspielhaus (750 seats). another tour, as we wanted summer in Jaffo, Tel Aviv , Again we received a lot of to stay at home and work on with our new production and excellent press coverage from our new production and on a restaurant in the dark. This the news and visual media. the Centre we are planning will be the beginning! The show was sold out more to open next year, but we We plan to start a new then a month beforehand just could not say “no” to group of Jewish and Arab and we did 10 performances an invitation to perform deafblind people and hope in 14 days in Zurich, Basel, at the Lincoln Center in that many more deafblind Bern and Geneva, with New York. We would be people will work at the Centre, one of them at the UN headlining at the Jewish focusing on their abilities headquarters, and again we music and heritage festival and not on their disabilities. had rave reviews: and performing on one of We believe that Nalaga’at We performed in German, the most prestigious stages is a message of hope for all French and English. We in the world! deafblind people in the world. stayed in Flumserberg, a small Even now as I write I We cannot do it alone and we village in the mountains. In still find it hard to believe. are looking for partners who the little free time we had, Shoshana, one of our actors would like to join us on this we enjoyed the late snow and said: “even in a movie things journey and who believe, as the visit of Swiss deafblind like that do not happen”. we do, that there is no limit to people for a joint workshop. human spirit. We went snow-shoe walking,

The non-profit organisation Nalaga’at (Do-touch), established in Israel in December 2002, has raised the curtain for 12 deafblind people, allowing them to enjoy the most basic of rights: to give. Nalaga’at is staging “Light is heard in Zig Zag”, a theatre production performed by deafblind actors who share their dreams and realities with the audience. Stage Production and Direction: Adina Tal Group Manager: Eran Gur www.Nalagaat.org.il

JULY – DECEMBER 2005 • DbI Review •27 ILRDBO

Deafblind Programming for a New Era

Susan Manahan shares the ideas and “process for change”management that the Independent Living Residences in Ontario have devised to better meet the needs of deafblind people

or the past 16 years, needs during this stage of the needs of the individuals’ Independent Living their lives. A new Program program. It was concluded FResidences for the Module was therefore by the committee that the Deafblind in Ontario developed. framework of the Program (ILRDBO) has been providing Concurrent with the Module would entail Service community-based housing, previous educational model, Tracking, Resident Program trained Intervenors, the new approach determines Portfolio and Outcome independent living skills, the best suited goal for each Measurements. work experience and social resident through choice. programs to individuals Yet the fundamental reason Service Tracking whose primary disability to revise this model is to This process is completed is congenital or early be certain that the current by staff who track the adventitious deafblindness. abilities, preferences and delivered service directly and Trained Intervenors support involvement in goal making indirectly with the resident or the individuals to achieve are individualized for the organization. This provides their personal goals and resident. ILRDBO has always statistical information when facilitate relationships taken pride in its individually applying for funding and and skills which promote tailored service and now it presents identifiable areas of effective participation in the has taken that approach a the service ILRDBO provides. community. ILRDBO currently few steps further to ensure Each area of the process runs eight three-person that the service it offers continuously revolves; Service homes and one individual involves the facets needed Tracking is required to obtain apartment program in York to ensure the best service funding, funding is needed Region, Simcoe County and possible for the individuals it to provide an individualized London, Ontario (Canada) supports. service for the residents and supporting 25 adults with During the last ten months, the service delivered provides deafblindness. beginning at committee level, information for Service Close to a year ago, ILRDBO ILRDBO has been extensively Tracking. This process was began re-evaluating the engaged in re-evaluating, successfully piloted in each process and function of researching, piloting and region and in mid-September the service they provided. launching approaches for ILRDBO launched Service Research was conducted to this Program Module. This Tracking organization wide. ensure that the service was module would continue still meeting the needs of to build on the current The Resident Program the individuals in the adult individualized framework stage of their lives and that of its program and would Portfolio they were adapting to the include other facets such as This entails a Person Centered changes that may occur ways to secure funding, to Approach to goal setting during this aging process. develop an individualized and it supports the Mission, It was concluded that the approach to goal setting and Vision and Values of ILRDBO educational model on which to utilize a measurement – to support choice and the service was based was no criterion to ensure that the individualized programming. longer ideal to meet these goal setting approach meets This portion of the module

28 • DbI Review • JULY – DECEMBER 2005 ILRDBO also ensures that the shared input from the pilot current abilities, desires and group, changes have already preferences of the individuals been made to build on the are being met and that the framework of this portion goals developed with the of the module. The second residents are measurable pilot group, consisting of and attainable. The portfolio five residents and five Key involves a variety of elements Intervenors, is preparing to to facilitate the Person pilot the process of the Multi Centered Approach, through Disciplinary Program Team the use of assessment meeting. The rest of the tools, which depict the organization will launch this needs and abilities of the facet of the module in the individual. Another element New Year. is utilizing a goal planning tool kit, offering choices Outcome in the process, frequency Measurements and focus of activities. A This quantifiable tool Multi Disciplinary Program provides information on the Team (MDPT) is also another effectiveness of program essential part of the goal planning. The benefit of setting process. The MDPT utilizing such a tool is to does not just involve the assist with planning more individual and staff, but productively for budget and brings insight and knowledge funding submissions, based from other sources, such on the requirements of the as family, friends and other Resident Program Plan. The regular community contacts, quantifiable detail provides Peter and Michelle to assist with the review and government, funders, and goal process. Incorporating the program and board level towards the fulfillment of the all these tools to create with information to make individuals’ needs, goals and individualized programming, decisions to keep or reform program, through continuous which is based upon the programs. This ensures that review of this service. The needs, desires and choices of the criteria are being met framework of the Program the resident, is the essential and achieved through the Module will continue to result of an individualized program service and through evolve and strengthen, Resident Program Plan. individual Resident Program allowing the individuals to Since March of this Plans. This portion of the grow, experience and embark year, a pilot group of Program Module will also be on the fulfillment of their three residents and Key launched in the New Year. independence and quality of Intervenors (responsible Creating a Program life. for development and Module consisting of these facilitation of the program) three facets will assist in For further information has been completing and securing funding to fulfill on the Program Module, evaluating this portion of the the support needed to feel free to contact ILRDBO Program Module. Through provide an individualized (905)770-4948 or email us the review process, and service. ILRDBO is dedicated at [email protected].

ILRDBO gratefully acknowledges the support of the Ontario Trillium Foundation for funding this venture.

JULY – DECEMBER 2005 • DbI Review •29 GermanySubhead here

100 years of support for deafblind people in Potsdam, Germany

Katherine Biesecke describes the very start of the celebrations for this very special birthday at the Oberlinhaus!

n 1887 the first deafblind girl, Hertha Schulz, moved Iinto the Oberlinhaus in Potsdam. At first she lived with children with other disabilities but then more deafblind children followed. So, in 1906, a home was founded, where only deafblind children were taught – the first ever home for deafblind children in Germany. It was a small house for about 6-8 children, who lived together with some Sisters and were taught by a teacher of deaf children. Some years later the house became too small and so a bigger house was built – the house where we still live and work – it was last renovated The school and the home for testing lots of things by in 2001. Today we have the children are in the old touching and smelling. We all a home for 20 deafblind house from 1912 and we call experienced this with hands, children, another home for 26 it “Hertha-Schulz-Haus”. feet, noses and tongues. We elderly deafblind people and Next year we celebrate the had a barbecue and a session a school where currently 37 100th anniversary of the first where we painted and deafblind pupils are taught. home for deafblind children. formed some works of art. We have already started the A high point of the day celebrations and had the first was an activity called “happy party on the 31 August 2005, hands” where we made when all deafblind people casts of our own hands! At living with us celebrated first your hand was creamed, together with all the staff! then you had to put your The youngest boy is 6 years hand into iced water. old and the oldest woman, Afterwards it was put into Mrs. Osterburg, is already 91 hot wax and again into cold years old. water. The feeling was very We started the party with intense and because the wax a big dance for more than was coloured and perfumed, 80 people in the courtyard everybody got a hand of his of the “Hertha-Schulz-Haus”. own – in red or blue or black Then we had fun while with a special scent!

30 • DbI Review • JULY – DECEMBER 2005 Germany

Cherry Harvest – an excursion from the home for deafblind people in Potsdam

Ralf Herrmann and Katherine Biesecke describe a special time of year

t is a very nice day in June! Wherever you look – bright Igreen. The air is glimmering and there is enough hope left that we might have a picture-book summer. Fourteen deafblind men and women who live in our home for deafblind people went out to relieve the cherry trees of their wonderful fruit! Our destination is a fruit estate in the Havelland where big fruit orchards are open for self-harvesting. When we arrived some of our deafblind people started right away with the harvesting, while others, at first, enjoyed the sun! Mrs. Linda Weiß, a woman about 80-years-old, with Usher Syndrome, reached out with masterly skill for the cherries and put them carefully into the harvest-basket on her shoulder. You could clearly see the pleasure in her face. Later she told us in sign language about the cherry harvest in her childhood in the countryside in pre-war Poland. Mrs. Cindy Preuss, a 29-year-old congenitally deafblind woman did not seem interested in harvesting – she mostly enjoyed the car trip. At the orchard she sat down on her seat-ball, which she always takes with her, and enjoyed the sun! She also liked the cherries she shared with those who harvested. So everybody had fun on the trip and also lots of personal experiences. We took a lot of cherries home with us – to make cake and jam in the days that followed!

JULY – DECEMBER 2005 • DbI Review •31 Aesthetics

Let the two minds work together!

Ove Vedel Andersen and Henriette Hermann Olesen, The Danish Centre for the Education of People with Congenital Deafblindness.

In this article Ove, a teacher of special education, and Henriette, a consultant for children with congenital deafblindness, ask “Is there a connection between aesthetics and communication?”

n August 2005 they presented of magnification, clarification, of an individual’s possibility to their ideas to the European differentiation and beautification interact and communicate with IConference on Deafblindness in of the types of expression used other people, but often we had Slovakia. For some years they have by deafblind people. These are to question why we sometimes been working on writing a book expressions that we may not achieved success and sometimes about the aesthetics concerning have noticed before, or we may we did not. interaction and communication even have thought they were This feeling of success has with people with congenital unconventional. Maybe we even been described by a number deafblindness. They like to share assumed them to be stereotypical of theorists. Daniel Stern calls and discuss this work, and the or socially unacceptable behaviour. it “the present moment” as an theory behind it, with professionals This made us more curious about expression describing mutual in Europe, and, as this is an aesthetics and how this could be participation. Per Lorentzen uses ongoing process, the meeting important to our work concerning the term “the aesthetic meeting”. with colleagues in Slovakia, and interaction and communication. Birgith Kirkebæk describes it other places, are very important for Looking back on our work, we as “a qualitative leap in the them. could hear ourselves describing intersubjective exchange”. A Through studying theories our ambitions of being “roomy” or participant in the workshop in of aesthetics we feel that spacious, being able to embrace Slovakia had his own personal way these theories, to some extent, the human being as a whole, but of describing it, namely as “the match the theories that can be we could not define exactly what flow”. used to establish and create it takes to make this spaciousness In the workshop we presented communication with people with present in our work on a daily a video clip that showed a congenital deafblindness. “Seeing basis – we had a feeling that we successful interaction between a and catching” the meaningfulness had experienced some limitations congenitally deafblind woman and of the expressions developed in relation to this spaciousness! her caretaker. The caretaker follows or “invented” by the deafblind Sometimes we also found ourselves the expressive communication person themselves – vocally or feeling that everything in the from the deafblind woman and bodily – has been the essence interaction with the congenitally suggests other expressions. They of our work so far, in order to deafblind person worked fine, take turns and enjoy themselves. make these expressions active in but we were not quite conscious The interesting part was the communication. With a little help of what had actually made this caretaker’s description of it – she from aesthetics we think we can happen. excused herself to the person who improve our ability to “see and We had a good theoretical was videotaping the sequence and catch” and thereby legitimize these background for the daily work. said: “This has become more of expressions, because aesthetics Words like interaction and play and joy, I’m afraid…” – she helps us to see the beauty of them. communication were, and are, divided play and joy from real In cooperation with various types keywords and we used them work, because she was expecting of artists (a dancer, actor, sculptor, when we discussed our work. a “proper” linguistic dialogue and singer) we have seen examples We understood the importance she didn’t see this as an important

32 • DbI Review • JULY – DECEMBER 2005 Aesthetics part of working with interaction No, it isn’t! We are certain that important to know what various and communication. This is good that is not enough. Is our goal to types of expressive acts mean. example of how we sometimes use be better logical thinkers? No, it We need to understand whether our head and logic and think that isn’t! We are certain, that that, they signify regulation of social if we are having fun, it isn’t serious too, it is not enough. Baumgarten interaction, proximity and distance, work. helps us out here – he also said exploration, or emotions. Or is it For a number of years we have that we have two ways of thinking: being used as vocabulary? worked with various artists and the aesthetic mind, and the logical At the same time we think they have contributed to showing mind. it is very important that we us the beauty and the importance The aesthetic mind makes us aesthetically sense the deafblind of play, joy and special personal think and see the beauty, it makes person as an equal partner in the expressive acts – however strange us sense, it makes us experience interaction and communication. they might seem. Klaus mentioned and acknowledge. If we can be a genuine partner in the dancer Riccardo Morrison, The logical mind makes us communication we think we will who has worked as a contact- see the logic, makes us rational, experience more success with our improvisation-dancer for many conceptual and intellectual interactions. years, and showed us a beautiful – looking for truth. So… if expressions end up dance with a woman. He carried being natural elements in the her on his back, danced around Ove and Henriette like spontaneous daily communicative and followed the movements “ interaction of both partners – the of her arms. They ended up in a to share and discuss professional and the deafblind sculptural setting where he was person – the “circle is completed”. standing on one leg and she was this work, and the We can understand, and see, in lying on his back, both stretching the interaction, the “total unit of their arms into the air. It was a theory behind it, contents, order and expression”. beautiful and very serious work. We could see how he, and with professionals in the other artists, worked very Europe References: seriously with play and enjoyment, ” Jørgensen, Dorthe: ”Skønhedens working both extrovertly (from metamorfoser” (The the deafblind persons’ expressive So if the human being is blessed Metamorphoses of Beauty), acts, through a theatre play or a with two minds, maybe we should Odense Universitetsforlag, 2001. sculpture) and introvertly (from let these two minds work together Lorentzen, Per: ”Uvanlige barns the deafblind persons’ expressions, in our work with the congenitally språk” (The Language of Unusual producing aesthetic process deafblind persons. How about Children), Universitetsforlaget Oslo, and the feeling of being equal acknowledging the rational in 2001. partners). It was this we found our work? How about seeing the Kirkebæk, Birgit: “Øjeblikket i interesting in our daily work, as beauty in the logic? How about musikalsk improvisation” (The we saw how the artists magnified, experiencing and intellectualising? Moment in Musical Improvisation), and legitimized, the expressions How about seeing the beauty and article in the magazine from deafblind people and enjoyed the truth? How about seeing the “Døvblindenyt” (Deafblind News), working with them – they seemed logical and the aesthetics? April, 2005. to “sense” more than “logical So what we are saying now Vedel Andersen, Andersen, thinking” in their work. is that we think it is of great Olesen og Vilhelmsen: “Æstetik A German philosopher, importance to know logically how og samvær” (Aesthetics and Baumgarten, once said that theories describe the development Being Together), Videnscenter for aesthetics is: “The science of the of creating communicative Døvblindfødte, 2005. sensation and the beauty in itself, acts, and what the disability Nafstad and Rødbroe: ”At as the experience of a total unit of deafblindness means for this skabe kommunikation med contents, order and expressions.” development. In our presentation døvblindfødte” (To Co-create But what are we saying now? we used the model of Anne Communication with Congenitally Is our goal to work as the artist Nafstad and Inger Rodbroe: Deafblind Persons), Nord-Pres, does, by sensing our way into the “To create communication with 1999. interaction and communication? deafblind persons”. We think it is

JULY – DECEMBER 2005 • DbI Review •33 SubheadEuropean here holiday 2006

Invitation

The 9th European Deafblind Holiday (European Deafblind Socio-cultural Exchange) Dolni Becva, Wallachia (East Moravia), Czech Republic. 12 - 19 August 2006

Dear friends, We are pleased to invite you to join the 9th European Deafblind Holiday that we are arranging in the Czech Republic next summer from 12th to 19th August 2006. The holiday is for deafblind adults from European countries and will offer a range of social, cultural, sporting and recreational activities. The programme will include walking, swimming and other moderate sporting activities. This will be combined with music and dance, cultural visits, excursions, and shopping. Time to sit with friends, relax and simply enjoy being together is an essential component of the holiday. The participants will have the chance to get acquainted with other people through the sharing of experiences and the exchange of information, while discovering new communication skills. The holiday will therefore enable deafblind persons to broaden their horizons through socio-cultural exchange and partnership. Practical information: Dates: Arrival: Saturday 12th August 2006; Departure: Saturday 19th August 2006. Venue: Recreational facility Orbita, which is a leisure centre and school. Accommodation will be in double rooms, although two triple rooms are also available. All rooms are equipped with WC and shower and the centre has good Czech cooking and beer!! The centre has a bar and a play area which allows for recreational activities. Location: The centre Orbita is situated in a quiet area surrounded by a forest. It is close to the town of Roznov pod Radhostem. This town is an important tourist and holiday centre in the east of the Czech Republic. It is in Wallachia, in the Moravian-Silesian Beskydy Mountains, East Moravia. The region of Wallachia is remarkable for its specifi c folk culture and natural beauty. Transport: The nearest airport is Airport Ostrava (Mosnov), which is about 40 km from the centre Orbita. The nearest main railway station is Valasske Mezirici, 15 km from the centre Orbita. Transport will be provided from and to the Airport Ostrava as well as the railway station Valasske Mezirici. Participation fee: We will be deciding on the fees after fi nalizing the programme. The fee will include full board and lodging, activities and transport scheduled within the holiday programme. Offi cial language: We will be using English in order that everyone will be able to communicate during the holiday. Therefore it is important that the deafblind participants or their interpreters/guides speak English. Travel insurance: The participants themselves must make sure that they have appropriate insurance for the journey and for their stay in the Czech Republic. More information: The fi rst announcement will be made in November 2005, as soon as we are sure of the programme and participation fee. We will distribute the fi rst announcement by e-mail to the addresses of deafblind people (and their organizations) who are already on our list. Organizer: Jan Jakes and the other members of the VIA Deafblind Association If you know of any deafblind people who might be interested in this holiday, please forward this preliminary invitation to them or send us their address. For more information or to announce your interest or to register using the preliminary form please contact by email as soon as possible. Email: [email protected] VIA Deafblind Association K Vodojemu 29, 150 00 Praha 5, Czech Republic. Tel: +420 251 556 381 Best regards! We hope to meet you in Wallachia, Czech Republic, next summer.

34 • DbI Review • JULY – DECEMBER 2005 Contact:Subhead CD-ROM here

Contact

Understanding the characteristics of specific interaction to build reciprocal interaction with congenital deafblind persons

A cd-rom for interaction partners Both the authors are highly Communication Guidance’. The of deafblind persons, e.g. experienced and knowledgeable Guidance Model guarantees the parents, siblings, caregivers, on this subject. Bernadette has initiative of the deafblind person teachers and consultants, or developed the guidance model as the key factor. Video-interaction other professionals working with and staff training materials on analysis is an indispensable deafblind persons. interaction. She has also developed technique. a number of products to support By Bernadette van den Tillaart and learning and understanding about CD-ROM CONTACT Marleen Janssen the significant needs of deafblind To share and exchange with others, children and young people. this knowledge and strategies Deafblind persons who have to Marleen, now at the University are recorded on the CD-ROM live with dual sensory impairments of Groningen, evaluated the CONTACT. The introduction is from birth, live exclusively in a effectiveness of the interaction written by both authors. The world of proximity and touch. guidance, based on a controlled sections for interaction partners With a foundation of high scientific research, and described and for interaction coaches are quality interaction they can the results in her dissertation. written and video-illustrated by develop feelings of security and Bernadette. competence. When the deafblind The Interaction Model Implementation of The Guidance person and interaction partner In ‘The Interaction Model’ concepts Protocol and elements of the attune their body language in like interaction patterns, regulation Interaction Model are empirically such a way that they can share characteristics and the course of an evaluated. The participating experiences and emotions, “real interaction episode, are described. deafblind persons derived more contact”, in the form of shared The model can be used for other pleasure in contact with their affective involvement, can come multiply-handicapped persons for interaction partners, and showed into existence. whom this seems appropriate. less stress and challenging Implementation of this problems after a guidance process. About the authors knowledge consists of two They established a more reciprocal Bernadette Van Den Tillaart and complementary strategies: contact with their interaction Marleen Janssen worked at the participation in the training course partner(s) and developed deafblind department of Viataal ‘Social interaction with Deafblind themselves in different other areas. (the former Institute for the Persons’, and implementation Deaf) at Sint Michielsgestel, The of ‘The Guidance Model’ in the If you are interested in this cd- Netherlands for many years. Now practical situation. The interaction rom (€ 29.50), please contact Bernadette works in the USA and coaches are trained and certified Viataal for an order form on: Marleen works at the University of in the deafblind specific ‘Training [email protected] Groningen. on Video Interaction and

JULY – DECEMBER 2005 • DbI Review •35 NETWORKS Acquired Deafblindness Network Network News Ges Roulstone Sense East regional Centre 72, Church Street, Market Deeping, Peterborough, Lincolnshire PE68AL Tel: +01778-344-921 Fax: +01778-380-078 Email: [email protected] Tactile Communication CHARGE Network David Brown California Deaf-Blind Services, San Francisco State University, 1600 Holloway Avenue, Network San Francisco, CA 94132-4201, USA Tel: +1-415-239-8089 Fax: +1-415-239-0106 Bernadette van den Tillaart Email: [email protected] Communication Network Jacques Souriau he members of the Tactile her in-depth practical experience CRESAM La Rivardière Communication Network and like to thank her for her 52 rue de la Longerolle 86440 MIGNE-AUXANCES, FRANCE met at the DbI European wonderful contributions! As a Tel: +33 - 5 - 49 43 80 50 T Fax: +33 - 5 - 49 43 80 51 Conference in Pre˘sov. They new member, we have welcomed Email: Jacques.souriau@ cresam.org presented their work within Paul Hart, and we all look forward [email protected] the ‘communication stream’. working together! We are planning Congenital Deafblindness in Adults Network Unfortunately, one of founding to meet each other in the Spring, Dominique Spriet 30 Rue Barbes members, Barbara Bettenmann, hosted by Sense Scotland in F-93600 Aulnay/Bois, FRANCE Tel: +33 - 1 - 48 69 68 64 will not be able to be actively Glasgow! The date of the meeting Fax: +33 - 1 - 48 69 68 64 Email: [email protected] involved anymore because of is January 13th and we are looking EDbN increasing obligations at Heim forward to it! Ricard Lopez APSOCECAT & APASCIDE Tanne, her work place. We will miss C/ Almeria, 31 ATIC ESP-08014, Barcelona, Spain Tel: +34-678-712-619 Fax: +34-678-782-600 Email: [email protected] Employment Network Seija Troyano [email protected] The Siblings Network Interpreters Development Network Mirjam Leusink [email protected] Multiply Disabled Visually Impaired he DbI conference in Slovakia European Network Kent Lundkvist was a successful one for Ekeskolan Resource Centre Box 9024, S-70009, Orebro the siblings network. Five Sweden T Tel: +46 - 19 - 6762 151 members of our network joined Fax: +46 - 19 - 6762 210 Email: [email protected] the conference, and some of the Nordic Culture Network presentations within the family Lone Poggioni Via G. Deledda, 19 stream were about siblings. The 06074 Ellera (PG), Italy Telefax: 0039 075 5179 413 word siblings was mentioned Email: [email protected] many times during the conference, Staff Development Network Pilar Gomez so I think we can say there is more ONCE [email protected] awareness. But of course there is Siblings Network still lots of work to do! Sabine Kersten Baal 73 We also had our own “Just for B-3980 Tessenderlo, Belgium Phone/fax: +32 13 67 67 50 siblings workshop”, during which Email: [email protected] we exchanged experiences and held in Salou (near Barcelona) in Tactile Communication Working Group Bernadette van den Tillaart discussed some of our thoughts Spain, from 1 – 7 October 2006. 15175 Prairie Road South Solon and concerns. Time was too short During this family event we will OH 43153, USA Telefax: +1-740-426-6728 and all siblings taking part felt it organise several workshops and Email: bernadettevanden [email protected] would be very nice if we could activities for siblings. Usher Network continue this conversation. When you would like to Carol Brill 500 Ballinteer Road, Dundrum We came home with new receive more information on Dublin 16, IRELAND Tel: +353-1295-1387 experiences and lots of ideas, and Listen to me 3, or if you would Email: [email protected] we hope we will be able to carry like to know more about the Usher Syndrome Study Group (USSG) Mary Guest out some of them. network, please contact me at: Sense 11 - 13 Clifton Terrace One event has already been [email protected] Finsbury Park London N4 3SR scheduled: Listen to me 3 will be UK Tel: +44 - 20 - 7272 7774 Sabine Kersten Fax: +44 - 20 - 7272 6012 Email: [email protected]

36 • DbI Review • JULY – DECEMBER 2005 Network News

Communication Network

Jacques Souriau

he big event, this summer, deafblindness (including elderly congenital deafblindness and a for the Communication people), tactile and low vision competent partner; TNetwork, was the European communication, etc. We were – The development of social DbI Conference in Presov, Slovakia. also impressed by the quality of concepts by the tactile mode The scientific committee provided the presentations made by family – Communication with children our group with the opportunity members, which were as excellent or adults with multiple sensory to run a 12 hour stream on as the professional ones from a disabilities communication. It was a success, technical and scientific point of – A holistic approach to not only because of the number view. communication with an acquired of the participants, but first and The main topics addressed were profoundly deafblind person. foremost because of the quality of the following: the presenters and of the audience. • a history of this field of research, Future events It was amazing how, in spite • an introduction to semiotics It is important to mention a of the variety of the presenters related to deafblindness, and conference which will take place in Oslo, 25th – 29th April 2006, and the difficulty of the main • a series of presentations on “Sharing Culture with Persons topic (semiotics), we managed illustrating aspects of the with Congenital Deafblindness”. to address thoroughly and meaning-making process: For further information concerning deeply, many aspects related to – How do we understand each the programme and the meaning-making in the field of other? deafblindness and in its many administration please contact NUD. – Analysis of communication sub-fields: congenital and acquired between a young adult with

Acquired Deafblindness Network (AdbN)

he co-ordinating group for papers. These should reflect of ADBN met in Aarhus in the title of the conference; “The TDenmark on the weekend art of communication – creating of 14-16 October for one of their solutions on the individual, societal twice yearly business meetings. At and organisational level in the this meeting the group were able world of Acquired Deafblindness”. to confirm the dates and venue of In line with the key words the 6th International conference of “art” and “creating”, the on Acquired Deafblindness. This co-ordinating committee has will take place between 1 – 5 decided to invite deafblind artists November, 2006 in Groningen, to submit examples of their work Netherlands. The Dutch for inclusion in an exhibition to the conference programme for organisation, Visio, will be hosting accompany the conference. Details Groningen. the event. Please make a note in of this will be contained in the your diaries now! second announcement. Ges Roulstone Now that the dates have been The group will meet again in Chairperson fixed the second announcement April 2006 to complete work on ADBN will be issued, inviting abstracts

JULY – DECEMBER 2005 • DbI Review •37 NetworkSubhead Newshere

Usher Study Group Pre˘sov, Slovakia 7-9 August 2005

Mary Guest

o be honest, it was quite a experiences. The challenge to hold an Usher keynote speaker TStudy Group in Slovakia this took us through year. Awareness of Usher syndrome the background seemed to be very low – Janka that led to the Sarisska said she only knew of one condition of adult! We did not know anyone Usher being working with children or adults recognized as a with Usher and we did not know genetic cause of anything about Presov or possible deafblindness in venues for us to meet. However, adults. Ronald’s we felt that we should try to put a wonderful programme together which would presentation is attract people who wanted to learn published here on more. page 17. carried out by the Institute for We were fortunate that Dr. It was good to welcome Dr Child Health and the Institute for Ronald Pennings from the Hanna Siedlecka, an audiologist Ophthalmology, in collaboration Department of Otorhinolarygology from Poland, who has been with Sense, in the UK. She has a at the University of Nijmegen tracking people with Usher in special concern for sign language agreed to give the keynote paper Warsaw for some years. We users – particularly those who use on the theme of ‘Changing hope that, as a result of making tactile or ‘hands on’ signing. The Horizons for People with Usher in contact with Hanna, the teachers NCUS is recruiting 200 families the 21st Century’. His centre in the in Slovakia and also the three for research over 3 years and is Netherlands is at the forefront of teachers from Kiev (Ukraine) who entering the third year. clinical and genetic research into asked to attend, will get together We hope very much that the new Usher syndrome. They see many in the future and have their own people who came from Eastern families and have pioneered a workshop on Usher. Let’s watch Europe will feel inspired to develop molecular mutation chip that has this space! outreach to people with Usher in helped speed up the process of Bente Ramsing from Denmark their countries. We also hope that looking for changes in the genes presented a joint paper with we will soon hear about workshops that cause various forms of Usher. Bente Heilesen (who helped and seminars, as well as social Maria Mikova, who works at the with early planning) comparing activities with people with Usher school for the deaf in Presov, kindly and contrasting support for two and their families, springing up in offered her school as a venue and families with children diagnosed Slovakia, Ukraine and Poland. provided much local information with Usher who have cochlear I would like to thank Viliam, that we needed. She facilitated the implants. This study has just started our wonderful interpreter, the first time attendance of 7 Slovakian and we look forward to hearing the technicians, Maria Mikova and the teachers of the deaf. She was our results and their conclusions when staff at the school for the deaf ‘mother’ – organizing refreshments we meet again, perhaps in Australia and also Anna Misinova who gave and making us feel welcome. in 2007. us so much friendly support. Also Our first speakers, Colin Bennett How families go through the grateful thanks to Bente Ramsing (UK), Carol Brill (Ireland) and Peter process of informed consent as who helped out so ably during the Hepp (Germany) took us right they are recruited into research 3 days and to her colleague Bente into living with Usher. Everyone programs was the theme of Liz Heilesen who could not attend but described times of loss but they Cook’s talk. She is the Family whose enthusiasm was the catalyst also talked about new directions Coordinator for the National which helped to bring about an that have led to rich and interesting Collaborative Usher Study being Usher Study Group in Slovakia.

38 • DbI Review • JULY – DECEMBER 2005 Network News

Usher Network News

Carole Brill

Hello everyone! At the recent DBI conference in the network to meet, at the DBI Slovakia, the Usher stream was conferences, for example. well attended. In total there were 6 For the immediate future, fantastic presentations followed by anyone who wishes to share 2 workshops. The final workshop information related to Usher is involved discussing the future of welcome to send an email to the European Usher Syndrome [email protected] and Network and at the end of the then the email will be circulated workshop, it was unanimously to everyone on the list. But for this agreed that this Network should be to happen, your help is required. re-formed into the Usher Network. So how can you help? There are This will mainly take the form of a 2 ways. The first way is you tell It is intended to research the communications network for those everyone about this Usher Network possibility of setting up a webpage with Usher, families and friends, and its email address. Tell them to on the DbI site and perhaps a professionals, including sign send an email and then their name membership chatroom. But these language interpreters. There will be shall be included on the circulation will take time. However, please no committee formed as it is purely list. The second way you can help forward any suggestions as they an information sharing network. is to send information about what will be welcome. There will be opportunities for is happening for Usher in your country.

Interpreter Network

y name is Mirjam After a little thinking I decided to Leusink. Just a little over do so! So here I am introducing M2 years ago I graduated myself to you in DbI Review as the as a Dutch Sign language chairperson of the I.D.N. interpreter. Ever since my first I really want to emphasize that contact with deafblind people I cannot do this alone. I’m quite (which was during my period of new to all of this. So I hope to study) I have been interested in get a lot of input from all of you, interpreting for deafblind people. interpreters, deafblind people, and Last August I attended the family members. Together we can Interpreter stream at the 6th DbI make this work. Together we can conference in Presov Slovakia. develop interpreting for deafblind During this stream we discussed people! So I look forward to reinstating the Interpreting hearing from you if you would like Development Network (I.D.N.), to be in at the start and also if you but they needed someone to re- have any information that might initiate it, a chairperson for the be of interest for this network. Network. Irma Bosman, who is also from the Netherlands and who Please don’t hesitate to contact was one of my teachers, asked if I me at: [email protected] wanted to take on this challenge.

JULY – DECEMBER 2005 • DbI Review •39 NetworkSubhead Newshere

Gill Morbey from Sense Scotland makes a proposal for an Arts Network

“A number of us have found that people are happy, engaged and various forms of artwork can be relaxed. Having fun through play extremely successful when working for example is a long established with deafblind people. Many tool for learning. countries are involved in the arts • Deafblind people often lack a and we feel it is time to pull this sense of identity and self esteem. wonderful expertise together in a DbI network around the arts.” 2. The International perspective I believe that DbI should establish • Through DbI and other an arts network and in support international organisations of this I have made a number of hearing can’t also experience we are committed to working assumptions. I have noted these this response. We reduce tactile across country boundaries and below: sensitivity through messy and yet we also know how difficult other forms of play and it is a 1.The deafblind person. this can be for sighted hearing natural progression to use this in • We know that communication professional people. We have the arts through sculpture with can present difficulties for different languages and cultures. paper mache, clay etc. the deafblind person and the • We believe we should be more • Our communication with significant others around that proactive, for example by forging deafblind children tends to be person. partnerships for joint working instructive: ‘sit down’ ‘time for • We know that these and funding applications. dinner, toilet etc’. We don’t place communication challenges can • A number of countries are sufficient emphasis on emotions result in challenging and other engaged in artwork in various and wellbeing, yet we know stereotyped behaviours from forms. This is part informed these are essential to learning. the deafblind person and in by key people and partly an We don’t learn when we are turn this can lead to stress and intuitive response to engaging angry or frustrated. The arts can anxiety with parents, carers and with deafblind people. We do it help to redress the balance. It is teachers. because we have success and we not the sculpture or the painting • Communication is best developed feel it is right. that is critical but rather the from the ‘natural inclination’ of process of expression, fun and the individual. By this I mean 3. Why the arts? the multi-layered communication that we should work with what opportunities. We can ‘talk’ is most comfortable and easy We believe that all of the above about colour, sound, touch, for the person concerned. We can be addressed to varying levels the project, and the emotional know, certainly with congenital through the arts. response. Both the deafblind deafblind people, that this will • The arts range from visual, person and the worker are not always follow formal sign tactile, music and drama and sharing the same experiences. language and, in many instances, thus offer communication it will develop on a personal level opportunities in various and • We know that identity, wellbeing – often between mum and child. multi-level ways. We use music and self esteem are improved through the arts. Recent drama • We believe in giving as many in a teaching sense to encourage productions from various communication opportunities auditory stimulation through countries demonstrated how to deafblind people as possible. to experiencing an emotional deafblind people respond to We have developed this through response. As sighted hearing being in control and ‘centre variations and combinations of people we experience emotion stage’. natural gesture, tactile signifiers, through music, it doesn’t have speech, and sign language to have words and can transcend • An arts network would give us through to symbolic language. language and culture. We have the framework for increased no reason to believe that a partnership-working, drawing • Through our own experiences we deafblind person with residual the expertise together from know that learning is best when individual countries.

40 • DbI Review • JULY – DECEMBER 2005 Network News

• An arts network would cross practice, and be open to new and easily understood activities cultural and language boundaries experiences and learning. and ideas. and give us a framework for joint • Some countries have already • We will publish articles in the DbI funding applications, for example worked together on different newsletter. through European funding. It projects. We will build on this • We will seek to evaluate and would already be in place and and sign up a core group to monitor our work through we wouldn’t have the continuing further develop the working evaluation forms, interviews, difficulties in seeking co- arrangements. video footage and reports to DbI. organisers and partner countries. • We will start by e-mail exchange • We will continue to proactively that will encourage the sharing seek joint funding opportunities, 4. How will the emerging of good practice. As it is the arts particularly through European network operate? we will encourage sharing video funding. and photographic experiences. We will follow the principles and • We will share these experiences values of DbI. To register interest contact on the web site giving practical • We will work together, sharing [email protected]

Employment Network

reetings from Finland! lose out when they look for a My name is Seija Troyano. job. Far too often the problem GTo my great delight I is society’s attitudes and an have had the opportunity to unhelpful environment. It is easy work twice with DbI Scientific to become frustrated! Today more Committees, first in Holland and and more deafblind people study last summer in Slovakia, working and become qualified. So why on the Conferences from start to don’t they have the right to expect finish. I have Usher – diagnosed the same as anybody else – to find at first simply as Usher Syndrome, a job? There are so many modern then Usher type 2, then type ways to support people if only 3. In December I celebrated my society would give them a chance. 10th year with a cochlear implant Working in a “different” way and it has been a very positive certainly does not mean that you experience. My history includes 10 are incapable of work at all! years in England and then back However, we will not get a In this way, by involving a lot to my roots where I live now – in lasting change in our rights before more people, we hope to make the East of Finland, Varkaus. I am we are ready to fight for that sure that there is always someone a qualified school assistant, but change ourselves – we have to put supporting and developing action at the moment I work as a town this subject on the table and invite for change. It also means that councillor, in my hometown, with our professionals to work with us. people need not work alone but other decision making bodies. We also hope that Employment share ideas and methods. will be one of those regular topics Finally I take this opportunity to at future conferences, just as Why is employment so greet everyone with whom I have rehabilitation, communication, important? worked during the past years! schooling and education are The right to work, and to be Thank you, take care & stay well! already! educated, has always been But also get in touch and help get Last August in Slovakia I ran a matter of course for me. our Network moving forward. the Employment stream and the Unfortunately deafblind and outcome was to create a DbI other disabled people often have [email protected] Employment Network where to fight for these things and still more people can work together.

JULY – DECEMBER 2005 • DbI Review •41 RegionalSubhead hereNews

Norway International Deafblind Sports and Culture and Bulgaria Organisation – IDBSC Dimitar Parapanov and Geir • Nadejda Golovan, Russia The contact group will Jensen announce this new The purpose of this also consider whether initiative. contact group is to work the International During the 8th European for international sporting Deafblind Sports and holiday week in Varna, and cultural activities for Cultural Organisation is Bulgaria, a contact group deafblind people as a to be established as an (interim committee) was continuation of the national independent organisation formed to establish this new activity in Bulgaria. or as an organisation within international initiative. The Among other things, the EDBU. Geir Jensen contact group consists of the contact group will discuss We hope EDBU and WFDB following members: how to organize international are supportive of the work • Dimitar Parapanov, Bulgaria sporting and cultural started already and are - (coordinator) activities, work out a draft willing to give the work their • Geir Jensen, Norway constitution and develop a full support. Please get in • Jan Jakes, Czech Republic programme and budget for touch if you are interested. • Peter Van Houtte, Belgium the organization.

UK Deafblind information worldwide

ense’s new Information journal articles and CD, information line that is run and Library service and material can be made by two members of staff Sis a major new available in other formats on who deal with a wide range source of knowledge about request. of enquiries from deafblind deafblindness. The new To see the contents of people, their families and service gives deafblind the library, or to search on professionals. people, their families and a particular theme or topic, To find out more Stephen professionals around the you can visit the new online about Sense’s library McCarthy world the chance to stay catalogue on Sense’s website: and information service in touch will all the latest www.sense.org.uk/library. please email stephen. information and research. Visitors will also be able [email protected] to read the latest Current A specialist library on Awareness Bulletins which deafblindness. lists all the latest publications about deafblindness. Sense’s library has a growing The Library does not collection of over 2,000 lend books internationally. items which cover a wide However it does offer a free range of topics related to enquiry and photocopying deafblindness – everything service for people contacting from autobiographies of us from outside the UK. deafblind people, to how to provide services for people with multi-sensory Deafblind impairments. The collection Information Line contains books, reports, We are also offering a new

42 • DbI Review • JULY – DECEMBER 2005 Regional News

Deafblindness is now recognised in Colombia!

he Deaf Federation of the Colombian Deafblind Health Department, SENA, Ximena Colombia (FENASCOL) Association (SURCOE). the Pedagogic University, Serpa reports Tand the Colombian This group of organisations the National University, Deafblind Association worked hard together to the Ministry of Social (SURCOE) are pleased to draw up, edit and present the Protection, COLDEPORTES, announce that Law 982 bill, with the sole objective the Bogotá Recreation and was passed on 2 August of ensuring that the interests Sports Institute (IDRD) and 2005, “whereby regulations and needs of the different the Bogotá Social Welfare are established aimed groups of deaf and deafblind Administration Department at determining equal people, all of which are (DABS), have gradually opportunities for deaf and heterogeneous in nature, been guaranteeing the deafblind persons, and other were covered by the law. right of deaf and deafblind provisions are stipulated”. The deaf and deafblind people to enter their As a result of this communities now have the programmes and courses law, deafblind people task of ensuring that state under equal conditions using have managed to get groups and authorities interpreting and guide- deafblindness recognised as comply with the law. This interpreter services This a unique disability, one with should be made easier as will help improve the living its own character and needs, a result of the experience conditions of those people and this represents major they have gained in the who use sign language or progress in the struggle to progressive compliance alternative communication achieve equal opportunities. with Law 324 of 1996 and methods, and who, in the This law has been passed as regulatory decrees on this, past, could do no more than a result of the hard work that and also because government aspire to a deficient level was put in by the following groups have become aware of primary education and organisations: the National of the issues involved due to to jobs involving things like Institute for the Deaf (INSOR), the demands made by the handicrafts. the CINDA Foundation, Sense different deaf associations The new Law 982 of International (Latin America), over the last twenty years or 2005 is a fundamental tool and the organisations more. for both deaf people, and which group together and Initiatives promoted by particularly deafblind people, represent deaf and deafblind organisations, such as the who have managed to get people in Colombia, namely Provincial and Municipal deafblindness recognised as a the Deaf Federation of Education Departments, the unique disability - something Colombia (FENASCOL) and Public Prosecution Service, which very few countries in the Supreme Council of the world have achieved. the Judicature, the Bogotá

A Big Gracias! Norman with the children Graciela Ferioli, Beatriz Birmingham. Zoppi and Ma. Luz Neri de We would especially like to Troconis. (3 “terremotos” thank Mr. Norman Brown, of Latin America) Programme Co-ordinator, We want to express our Distance Education MSI acknowledgment to Hilton Programme at the School Perkins Program, Perkins of Education, University of School for the Blind and Birmingham. He has been a FOAL for believing in us “visionary” Professor offering and giving us the important support, advice, trust, opportunity to get a Master’s motivation, guidance and Degree at the University of friendship.

JULY – DECEMBER 2005 • DbI Review •43 RegionalSubhead hereNews

Russia Making a difference – changing attitudes and spreading the word in Ufa, Bashkiria

n the national republic Specialists came to discuss at our own conference! of Bashkiria we had a the medical, psychological Iserious lack of awareness and organisational questions Our leader about deafblindness. Our relating to the challenges of Nothing was possible organisation “Omat”, which Usher syndrome. We are very without a good leader; the means “Hope” in English, proud of this event! Director of our organisation, was born in 2003. We Nina Urlova. She has Usher continue to work hard in What is the result of Alfia syndrome and began to work our Republic to make the this conference? with deafblind people, on Valiullina government understand the Our specialists her own initiative, in 1999. problems of deafblind people describes the • made plans for working When I saw her for the first and provide them with success of with this category of time I was surprised at her support. people; cheerfulness, and it was hard “Omat” in We identified 139 deafblind • began to learn about and not to notice her leadership supporting people. The doctors were not carry out genetic research qualities - she is very active deafblind ready to help these people and purposeful. Nina has and we began to work to to find out about deafblind children and people; now visited the UK and has support the people ourselves. learnt a great deal about • began to work with adults. After the first meeting of fighting for the rights of pupils with dual sensory the parents of the deafblind deafblind people. impairment; and children with the doctors, we Thanks to Sense • developed a special concluded that these children International I was invited programme for the early need joint action from to the 6th Dbl European screening of deafblindness. different specialists. So we Conference on Deafblindness invited specialists to discuss in Slovakia. I have no words the problems of Usher How do we help our to describe my feelings. It syndrome in our Republic. specialists? was my first visit to another Soon after the event we We encouraged our country and I met specialists, started making plans for specialists to work in parents and siblings of a medical conference and, partnership and gave deafblind people there. I am thanks to partnership from them more information full of admiration for the Sense International and about Usher syndrome. work that they are all doing. Usher-Forum (Moscow), We put together special The atmosphere was so we had the opportunity questionnaires for the warm that it made me feel to hold this conference Institute of Biochemistry welcome. I have gained many in April 2005. It was the and Genetics, which has new ideas as a result of the first medical conference the opportunity to carry out conference and I have also in the history of Russia. research about deafblindness. got more useful materials Everything is free of charge for our work in Ufa. I want for us. Our first success! to thank everybody who supported me there. I am very Another success happy to meet new friends! I also presented a paper Another conference on Usher called “Being pushy. It is the Syndrome will be held by the way of getting all support specialists from the Centre we need”. I would advise for Hearing Impairment. This other parents to keep happened as a result of our pushing forwards despite the opportunity to raise awareness obstacles!

44 • DbI Review • JULY – DECEMBER 2005 Regional News

Recent Developments Downunder Australia

Migrant women at Immigration to do more to http://www.abs.gov.au/ increased risk of promote rubella vaccination AUSSTATS/abs/40.nsf/mf/ rubella infection in migrants from these 4430.0?OpenDocument countries. Clearly, existing Celestine Hare, CEO programs are not reaching Guidelines on of Victoria’s Deafblind these women and they are Information Access Association reports that being disadvantaged. The Australian (Universities) women born outside “We believe that almost Vice-Chancellors’ Committee Australia are at a all women will accept (AVCC) has released substantially increased risk vaccination once the benefits Mike Steer Guidelines on Information of rubella infection during have been explained to Access for Students with a reports pregnancy. This claim is them. It is not that these Print Disability. The working in accordance with data women refuse vaccination, party that developed the from the Mercy Hospital for they just do not appreciate Guidelines was formed Women, published in The the significance of rubella following the 2002 American Journal of Public infection in pregnancy and Human Rights and Equal Health earlier this year. In a how it can be prevented” Opportunity Commission study of over 65,000 women said Dr Adrian Thomas, (HREOC) sponsored forum over a 25 year period, chairman of the State of in Sydney. The Guidelines women who were born in Victoria’s Rubella Committee. developing countries always can be downloaded as a Word document (172k) had a significantly higher Inquiries: Dr Adrian Thomas from the AVCC web site risk of infection than women 001 61 3 9419 7918; or to at http://www.avcc.edu. who were born in Australia. Ms Monica Haverkamp, au/news/public_statements/ In the year 2000, those born Rubella Education Officer publications/GuidelineOnInf in Asia, Sub-Saharan Africa 001 61 3 9887 8683. and South America, had oAccessForStudentsWithDis five times the risk compared abilities.doc Interesting statistics to their Australian-born counterparts. For women The Australian Bureau of Good Reading Statistics Survey of Disability, born in China this increase in Round Table on Information Ageing and Carers, indicates risk was ten fold. Access for People with Print that one in five people in These data correlate with Disabilities: Proceedings Australia (3,958,300 or 20%) those from the Australian from the 2004 Conference reported a disability. The Perinatal Statistics Unit are available at http://www. labour force participation which has been collecting e-bility.com/roundtable/conf_ rate was 53% and the data on congenital rubella proceedings04.php. unemployment rate 8.6%, infection since 1993. ‘Thanks mate, I’ll try that’ compared to 81% and Since that time, 14 out has been published by RBS. 5% for people without a of 35 children born with RVIB.VAF Ltd (trading as disability. People aged 60 congenital rubella infection Royal Victorian Institute for years and over accounted were born to mothers from the Blind). The book, based for 3.35 million or 17% of countries with no rubella on interviews with men the population. Just over vaccination programs who like working with their half had a reported disability – principally Asia and Africa. hands, both at work and in and 19% had a profound or Similar experiences have their free time, gives handy severe core-activity limitation. been reported from other hints for practical work. It There were no discrete data countries. can be downloaded from in Deafblindness. The Deafness Foundation http://www.rvib.org.au/ of Victoria has therefore publications/pubs/Thanks2 To access the Summary urged the Australian Federal 0mate20I27ll20try20that. of Findings, go to Departments of Health and pdf.

JULY – DECEMBER 2005 • DbI Review •45 SubheadRegional hereNews

Australia World Conference (continued) Good news is sometimes hard to get, so here it is again. Some DbI Review readers may already know that Senses Foundation has won the bid to host the next Deafblind International World Conference in Western Australia in 2007! So start saving your pennies. We are hoping for a large delegation of ADBC members and neighbours from the Oceania region and hope that many of you will consider offering papers or posters for presentation. We’re very busy! The Conference will be The Conference Planning Committee is hard at work held from 25-30 September putting in place a fabulous confereence for you 2007 at Burswood Resort in in 2007. A full range of accommodation venues is Perth, Western Australia being identifi ed from the very plush to the modest – something for every budget. A variety of social activities is being planned to suit the adventurous and those who just want to relax and enjoy! We are planning the best conference yet!

Register your interest NOW! 25-30 September 2007 - Perth On the website: www.dbiconference2007.asn.au or email: [email protected]

Spain Recent publication

Pilar Gomez Viñas writes about a book that she has been working on, “La Sordoceguera”. It’s a really comprehensive and highly recommended publication in Spanish, is written and published by ONCE in Spain. (ISBN 84-484-0142-5) or contact email address: [email protected]

46 • DbI Review • JULY – DECEMBER 2005 CHARGE Syndrome

CHARGE SYNDROME : dual sensory impairment, cognitive development and anxiety

Christine Tap Charlotte Reau, Corinne Blouin, Christine Tap are all psychologists working in France and Christine is also the Headteacher of CESSA, a school for deafblind children. This new research is divided onto three articles which will discuss methodology, cognitive development and the first clinical observations about anxiety. The first article introduces the work and focusses on the research methodology employed.

o begin…a little about - Is there a cause and Timescale our research team: effect link between visual The time scale is 3 to 4 years. TThe CESSA is a special impairment and intellectual Children with CHARGE will school for deafblind children development? We have be compared with the other near Poitiers. The children heard of one piece of deafblind children who do are in residence during the research emanating from not have CHARGE. school week and go back Paris that indicates this. home at the weekend. The - Do vestibular problems have Our participants 29 children currently in the an influence on learning Our research involves 9 school are very different difficulties? children, 5 boys and 4 girls, regarding: - Why do the children have so all presenting a double visual • their visual handicap many difficulties in taking and auditory impairment. • their hearing loss the initiative? They are between 8 and 20 • their cognitive level - Why do the children seem years old. • Their motor competencies. to be more learning disabled than they really are? Over the years, a change The methodology - Why do they have so much has taken place in this We started the research in difficulty in communicating population of children with November 2004 and the first - What is the origin of the more and more presenting 8 months were used to adapt difficulty they have in with genetic conditions. tests and to administrate communication? Among those, CHARGE them with the children. syndrome takes an important At the same time we built All these questions led us to place: 9 children are currently educational grids. the following research project. in the school. For our research, we We would like to thank designed the following the parents and children, The Research procedure CESSA professionals and Its aim psychology students for their To discover the links between 1) Family interviews contribution to this study. sensory impairments, Here is a broad outline In September 2004 a cognitive development and of the various topics conference on CHARGE anxiety. addressed syndrome took place in • general data on the family: POITIERS, during which Its objective date of birth, profession, a number of questions To gain an insight into the and siblings... emerged: children in order to improve • questions about their education. • Birth : pregnancy, the childbirth...

JULY – DECEMBER 2005 • DbI Review •47 CHARGESubhead Syndromehere

• diagnosis: time, 2) The educational field attention and regulation of information about the CESSA professionals the behaviour. diagnosis. developed a grid designed An adaptation was carried • early childhood (hospital to collect observations out for the children having admissions, different type indicating attitudes to linguistic capacities. of care and interventions...) • body security • Neuropsychological • relational and • showing a search for scale NEPSY: aims at communicative aspects kinaesthetic information evaluating various (the sibling and the child, about the positioning of cognitive competencies. communication with the the body in space NEPSY is a test assessing child, the 1st smile, 1st • attitudes with respect to the development of glance...) the social situation the neuropsychological • kinaesthetic aspects • taking the initiative functions in 5 fields: (positions of the child, • Attention and executive kinaesthetic sensations); 3) The psychomotor field functions food and feeding... • Complete assessment • Language • cognitive aspects (play, • Sensorimotor functions attention, orientation in 4) The medical field and • Visual and spatial space capacity to take analysis of the functional processing initiative, interests of the use of the senses • Memory and learning child...) • Vision • emotional aspects (type • Vestibular functions • EDEIR: scale of cognition of character, presence and • Taste and sense of smell development. It is a test type of anxiety, expressivity • Tactile and kinaesthetic to evaluate intellectual of emotions by the child, senses competence for the child sleep.) from birth to 12 years of • behaviour and the We are in the process age adapted for the autistic development (1st months of developing a medical child or presenting auditory of life....,sensory motor protocol with medical impairment developmental aspects...) specialists of the Poitier It is a framework to collect Hospital. This involves an ENT Test of factor G: Cubes information about the child, surgeon, ophthalmologist, of Khos (in progress) and about the links between and geneticist. In the methodology, when the parent/child/disability. We We think it is strange that we started, we wanted to expect that better knowledge touch, smell, taste and the have more information from of the first link will help vestibular senses are little different sources, in order us understand the current studied although we believe to compare the results. The relationship of the child with that with other deficiencies, tests used are adapted to the environment and the they can increase the child’s children of 3 to 12 years’ origins of the manifestation difficulties in grasping old. In our study, most of anxiety. We know that information from the children are older, but their emotional security is the basis environment. communicative capacities are for learning involvement and below normal. We still keep that the emotional balance 5) The psychological field doing these tests because of the child is related to the • Clinical talks with the we do not want to get a quality of the child-parent child aiming at seeking his mental age or intellectual relationship. manifestations of anxiety level. We want to understand In the research a constant • Scale of early social each child’s problem solving link will thus be established, communication: ECSP strategy problem solving for each child, between the Three functions of socio- strategy. results of the tests and the communicative development data collected during the are evaluated by the ECSP: discussion with the family. social interaction, joint

48 • DbI Review • JULY – DECEMBER 2005 CHARGE Syndrome

In this figure we describe 4 axes around the sensory impairment: attachment, anxiety, access to the world, cognition and learning. We want to see how these 4 axes interact with each other.

1 Attachment and Sensory emotional security

impairment Emotional deprivation because of : in CHARGE • hospitalizations syndrome • sensory problems • vital risk 1

2 Anxiety 4 Cognition & Learning Grows with : Learning difficulties because • attachment problem • long time hospitalization 4 2 • difficult access to • lack of emotional security the world because of sensory problems • vestibular problems • lack of mean of • anxiety communication • lack of technical adaptation to compensate sensory problems 3

3 Access to the world

Difficult because : • hospitalization • sensory problems • lack of mean of communication • lived in adapted school

Initial results This figure does not aim to present complete and final results, but rather the broad outline of our reflections so far. Some assessments are still in progress, and the analysis of the cross comparison has not been carried out yet In our next article, we will describe the first results about cognitive development.

JULY – DECEMBER 2005 • DbI Review •49 FranceSubhead here

Chevreuse, the Medical and Educational Institute

Jean-Marc Cluet introduces us to the early work with deafblind infants and their families at this special centre in Paris, France

n 1972, L’Entr’aide Very soon, at L’Entr’aide was necessary to teach them Universitaire* undertook, Universitaire staff came how to take care of their Iwithin an associative to think about creating a infants. Babies must feel they framework, to promote and school; it was important to are receiving the attention develop welfare activities in organize early care for these of their environment, they various fields where urgent young children who might must feel secure. Clinical needs were emerging. receive a special education. In information must be refined, Alerted by some families that 1981, ten people or so went in order to make the best could not find any adapted to the Netherlands to join of the remaining vision services for their children the St Michielsgestel team and hearing in an adjusted with the double handicap that had been working with rehabilitation programme. of blindness and deafness, deafblind children for over 20 This service had 4 L’Entr’aide Universitaire years, under the leadership independent rooms. Mothers studied various possibilities of Professor Jan van Dijk, learned repetitive gestures to of facing this issue. a well-known specialist in create contact with babies, One of the main causes deafblindness. This staff and some small physical of this dual impairment came back with lots of exercises and some care that was rubella in pregnancy. information and experience – steadily and durably will There were also after-effects enough to lay the first stones contribute to their child’s of meningitis, and some of the Chevreuse Institute. development. During those congenital deaf people had first years, a true partnership retinitis pigmentosa. The Chevreuse Institute was created between parents An evaluation of the needs The Chevreuse Medical and and professionals. They came in France was made by, Educational Institute opened with their children and took among others, a parents in 1982. part in activities. group CLAPEHA**, and we To begin with, it served 24 counted near 200 deafblind boarders and 6 day-pupils. What was it like? children, two thirds of them And for short periods it The premises were organized under the age of 20. also saw mothers and their around a central patio and First, special consultations babies, living too far away to we created 3 autonomous for deafblind children were come for a consultation. Early living units, with rooms set up at the Centre of education must begin as for the children, one room Educational Assistance of early as possible. Too often, for their special education Rozanoff Street in Paris. mothers are disarmed and it teacher, and a living room

50 • DbI Review • JULY – DECEMBER 2005 France

with a kitchenette. It was important that the children should feel it was their place, that they should be supported by a limited number of professionals, (always the same), so they should feel secure, and that contacts should be established. The daily life actions of washing, dressing, tidying up... must be done according to a routine that create bases and enable the child to develop. It is absolutely necessary that all team members totally agree and work in harmony with the child. Everyone did their best to use refined techniques opportunities to each of ones arrived, with various inspired from those used these children. aetiologies: Usher syndrome, for deaf or blind children, Four teachers were added CHARGE syndrome, and communicating the fruit of to the projects but progress genetic conditions... his/her observations, and was slow, the handicap was learning from the failures and severe, and the pathological Changes achievements of each of the disorders, mental deficiencies children. The leading team, that and learning abilities of each originated the project, of these children would not Training gradually left. allow them to become other A new dynamic was marked The team was organized “Helen Keller”. by a new project for the older around the members who and the more autonomous of had had training in the Difficult times the youngsters. Another unit Netherlands in order to Around the adolescent was opened to answer the develop skills and knowledge period, a kind of split question: How can we make adapted to every child happened between families the youngsters understand capabilities. The preferred and institution. It was very that they are growing up? communication was hard for families to accept They left the institute and dactylology involving both the slow progress of their went to pottery, woodcraft, the tactile sense and sign children and many children or cooking workshops... and language. A set of special did not get past the symbolic a lot of outside activities equipment, for group stage. The initial vision were organized around the or personal use, allowed was very far from reality, teenagers. This was felt as a the maximum use to be and that brought on some development with new hope, made of remaining vision disagreement within the and the positive exchanges and hearing. With patient teams. This period was with the families resumed. active attention, thoughtful in keeping with a sudden repetitiveness, agreement awareness of the complexity *Entr’aide Universitaire: between them, medical and of the child, a taking into University Mutual Aid paramedical staff and special account of learning disability, **CLAPEHA : Liaison and education teachers were behaviour and personality Action Committee of Parents bringing quality care and, disorders. Some children of Children and Adults with up to a point, educational left the Institute, new Associated Handicaps.

JULY – DECEMBER 2005 • DbI Review •51 Bulgarian holiday 2005

The European Holiday – in Bulgaria

Guiseppe Gargano, known as Pino, sends us a postcard from Varna…

y name is Pino, I woman from Russia and her onto these stones in order to am both visually interpreter. It was raining gain positive energy. Mand hearing- and we had no umbrella! That evening there was a impaired. I would like to tell We went round the shops party hosted by the President you about my time spent and then we ate in an of the Bulgarian Deafblind in Bulgaria, assisted by my underground restaurant. Association. There was some communicator/guide Stefania Varna is nice with quite a Bulgarian traditional folk Scafa. few shops, but it is not a rich music and it was wonderful. city. Once we returned we The next morning we went Saturday 2 July had dinner and deafblind to the Black Sea where the In the morning we were at people from many European beach was covered with the airport in Rome, ready countries had arrived. shells. This beach was 15 to leave, but the plane was There was a small group of minutes walk from the blind late and we had to wait! We Bulgarian deafblind people school we were staying at. changed planes in Hungary and there were also other In the afternoon we went to and, because of our initial Bulgarian people with us on Varna where we were invited delay, our second flight was the holiday. to meet the Mayor at the ready without much further Town Hall. delay. We arrived at 3.30 Tuesday 5 July pm but our luggage did not We went with the group to a Wednesday 6 July come with us - it had been place that many years before We travelled 50 km from the left in Budapest - so the next had been covered by the sea. school into the countryside day Stefania got up very early Over the years the seas have where there was an old to retrieve it. dried up and there were very Bulgarian farmhouse large standing stones that containing a museum and Sunday 3 July were described to us as being a restaurant. As we entered We went out to visit Varna energy sources. We were we were offered bread that along with a deafblind encouraged to put our hands we were told to dip into a bowl of Bulgarian spices, which is a local custom. I took many photographs of the tools used in the past by Bulgarian farmers and also of the environment they used to work in. A group of local deafblind people came to meet us and apart from singing Bulgarian songs they were also dressed in traditional clothing and they offered us handmade gifts. Some of these were women of 80 years old who gave us handmade woven plant containers. We then went to the sea but the

52 • DbI Review • JULY – DECEMBER 2005 Bulgarian holiday 2005

weather had changed and it Friday 8 July chess tournament where the was cold. We visited a park that had non-Bulgarians played the trails for disabled people Bulgarian professionals. The Thursday 7 July where the names of trees Bulgarians won most games! We walked from the school were written in Braille. We That evening there was a to an equestrian centre and had lunch with the group dinner and party which lasted exhibition area where we from Belgium and in the all night. We had to say our were able to ride on horses afternoon we went for a boat farewells because everyone that were led. ride on the Black Sea. was leaving. We had a free afternoon so I went to the beach where Saturday 9 July Stefania and I stayed a little I was able to watch men We had a free morning longer, getting to know the pulling in their nets from the and I went to the beach town a little better, shopping sea. This is a very hard job with the French group. In for souvenirs and relaxing. that lasted several hours. the afternoon there was a Next year the holiday will be in Moravia in the Czech Republic. I hope to meet you there!

JULY – DECEMBER 2005 • DbI Review •53 Slovakia photo album

European Conference Pre˘sov, Slovakia August 2005

54 • DbI Review • JULY – DECEMBER 2005 Slovakia photo album

JULY – DECEMBER 2005 • DbI Review •55 HK World Conference

Helen Keller World Conference – Tampere, Finland June 2005

A letter from Colin Bennett

uddenly, a group of people The slogan of the in, and the organisation of, the moved across the pavement “ conference lived up to that ideal. Sand cut me off from conference was ‘Our The arrangement was the normal my quarry. I was momentarily one of workshops and plenary disorientated. Where was I? And Right to be Deafblind sessions. Also normal was the what was my quarry? Well, I was dilemma over which workshop to walking on the streets of Tampere, with Full Participation in attend as they clashed. A further the second city of Finland (OK: I complication was the fact that know the good citizens of Turku Society’ the 2nd General Assembly of the claim that they are the second ” WFDB was being held, largely in city of Finland but we will let “exploring”, eventually I found my parallel. A welcome feature of the that pass.) My quarry was one hotel which turned out to be a very conference was the information of those suitcase trolleys being modern one. I collected my key desk, where very competent Finns pulled by a Swedish participant from the receptionist and I asked were able to answer any questions. in the conference that we were her if someone could show me to There was an unobtrusive about to attend. As long as I could my room. “No” she said, but I was contingent of Finnish student keep sight of the trolley I could not surprised or offended. This sign language interpreters who follow the Swedes in their quest was Finland after all and people popped up whenever you needed to find their hotel. Everything was are expected to be self-sufficient. them, complete with their fetching alright if I could stay a few metres It was very comfortable but I was neckerchiefs. They were very behind them. I rushed forward and presented with that terrible Finnish useful for people like me who had managed to capture the elusive phenomenon: tiny pillows. There no guide or communicator even trolley again – until the next time. is always a spare pillow but trying though I do not sign. They spoke Eventually we reached their hotel to sleep on one tiny pillow perched excellent English (the language of and I was able to get my bearings. on another or side by side is just as the conference) and could sign in It was early June 2005 and I had bad as dealing with one. However, Finnish and other sign languages. just flown into Tampere Airport to Life has brought bigger problems We all had name badges which attend The 8th Helen Keller World to me than that. we wore day and night (perhaps I Conference, which is held every The 4-day conference was based exaggerate). I think these badges four years in different cities across at Tampere Hall and was attended should be jumbo-sized with large the globe. Interestingly, Helen by 417 people from 45 different lettering in contrasting colours. Keller had visited Finland and there countries. The slogan of the The opening ceremony was exists a grainy film clip of her visit conference was “Our Right to be preceded by a session in which the not long before her death. I was Deafblind with Full Participation arrangements to assist people with representing Sense, The National in Society” and, the participation sensory loss were explained. For Deafblind and Rubella Association: me, with Usher Syndrome 2, this the UK’s largest charity in this field. meant induction loops and I am Also taking place at the conference pleased to say that the quality of centre was the 2nd General these was high. Also remarkable Assembly of the World Federation was the quality of the simultaneous of the Deafblind (WFDB). translation into English and Finnish I had last been in Tampere of other languages including sign in 1967 and thought I would languages. There was always a recognise it but I could not. At copious supply of sign language the Airport I had met a group of interpreters at the front of the Swedish participants and after auditorium. An interesting

56 • DbI Review • JULY – DECEMBER 2005 HK World Conference

“Early that next morning I got lost at the station because it is very big and mostly underground. At last I found the platform but I was three minutes late for the train. ” feature of the conference was the I felt sorry for the African delegates to the correct line in the new continuous description in English huddled around the bonfire. Still, Underground station there. The and Finnish of everything that I think we all had a good time Metro system had been built since was happening on the stage. We although we were very unlucky my last visit. got to know the Finnish word with the weather throughout the I found my way – I don’t know for “description” (kuvala) as this conference. how – to the headquarters of the word was used whenever the Another memorable visit was Finnish Blind Society where the skilful describers gave us very that to the well-equipped Resource Deafblind Society has Offices. I comprehensive information over Centre and living quarters on the met the new chums I had made at our headphones. outskirts of Tampere. This is an the Conference. I spent a couple I will not give a blow-by-blow exemplar not only for Finland but of days in Helsinki with Heikki and account of the proceedings of also for the whole world. others and then spent a few days the conference as you can read The conference finished on the with old friends near Lahti. about this in the published Tuesday morning but I decided material. I would rather mention to stay the extra night. It is good Colin Bennett the peripheral activities. Near the practice for Usher people to start Hove beginning of the conference we a trip as early as possible in the England were all invited to a reception at morning to get maximum light, the Tampere Town Hall where even in the Finnish summer. I the Mayor welcomed us using wandered around the city and did If you would like to see a lot more an excellent PA system. These a dry run at the station for the photographs of the conference, functions are always difficult following morning. Early that next please contact Colin as he has a for people with serious hearing morning I got lost at the station Yahoo Photo Gallery. problems who cannot sign, because it is very big and mostly because of the background noise. underground. At last I found the [email protected] I normally retreat to a corner to platform but I was three minutes eat and drink the goodies (never late for the train. Amazingly, it a hardship) and hope that people was still there so I jumped in just will come up and talk to me which as the doors were closing. When usually happens. the ticket inspector came along Another big event was the I asked in mock indignation why outing to Viikiinsaari, an island the train was four minutes late: in a nearby lake. The island was “What is the world coming to?” He a typical Finnish holiday place hung his head in mock shame and with a dance hall, a sauna and the ice was broken among all the bonfire provisions. I well know passengers in the compartment. that June days in Finland can be Finns are like English people – they really warm and pleasant but I are rather reserved but they like had a job persuading many of the a joke. So I was able to converse participants that this was the case. all the way to Helsinki Central The day was so cold and drab and Station and was taken right down

JULY – DECEMBER 2005 • DbI Review •57 Secretariat News

Secretariat News corporate members. We strongly encourage individuals to join DbI in order to contribute to and widen Management our global community in the field of Committee deafblindness. Meetings of the If you have any queries regarding DbI Management the status of your membership, DbI is a vital network for Committee and please do not hesitate to contact the all involved in the field of deafblindness. In order to Council took Secretariat at secretariat@deafblindint best serve our members, place in August ernational.org it is crucial that we raise Sumitra Mishra 2005 prior to the sufficient funds through DbI European DbI Website fees to finance our basic Conference in Slovakia. If you want activities. With this in We have redesigned and updated the more details on these meetings mind, there is a Corporate DbI website so as to provide regular contact the Secretariat at secretariat@ as well as an Individual up-to-date information and make it deafblindinternational.org. membership form for you more user-friendly and easy to access. to fill in. Please encourage The major DbI events coming up are: Please do keep visiting the website as many people as possible • The 14th DbI World Conference and send us your comments and to join. will be held from 25-30 September feedback! Non-Voting Members 2007 at Burswood Resort in Perth, We welcome new submissions to consist of individuals, Western Australia. It is being the website so if you would like to national networks organised by Senses Foundation. contribute or advertise an event or and non-subscribing The Scientific Committee had its recent success, please send details to Corporates. Non-voting first meeting in August 2005 and members can contribute Eileen Boothroyd, DbI Information has started to design a programme to the decision making Officer, at Eileen.Boothroyd@sense. which we are sure will be interesting process of DbI through org.uk and relevant to people from either a corporate member or an international throughout the world. The DbI Secretariat network. Non-voting • The next DbI European Conference, members will receive in 2009, will take place in Italy and The DbI Secretariat is always aiming a copy of DbI Review will be organised by Lega del Filo to improve the service that we offer. and other relevant DbI d’Oro. This decision was made We look forward to your suggestions, information. by the DbI Council at its meeting advice and support for providing a Non-voting membership during the Slovakia conference. timely and effective service. costs €30 a year or a Many congratulations to Italy!! We hope that you received your discounted €100 for four copy of the previous issue of DbI years. Review (issue 35). If you have not Membership Update Voting Members are received your copy, please contact the representatives of All DbI members are encouraged to the Secretariat. We are also keen corporate members renew your membership, if you have to update the information we have who have paid their not done so already. Please quote about you and your organisation, subscription fees, and the representatives of your specially assigned membership so kindly make sure you send your recognised DbI networks. number in all communications. membership renewal forms with There are currently more than 650 your latest contact details to the There are now two tiers of Corporate Membership: individual members and 50 corporate Secretariat. members from more than 80 different If you have any queries regarding Large Corporates: countries. your current membership or would Annual Fees between €3,000 and €5,000 If you know of any organisation that like to complete the membership may be interested in joining DbI as form via email, please contact Sumitra Small Corporates: a corporate member, please pass on Mishra at: secretariat@deafblind Annual Fees between €300 and €1,500 their details to the Secretariat now! international.org or post your DbI would like to express its query at: DbI Secretariat, Post Box Corporate Members can appreciation for the continued No: 9601, Janakpuri, New Delhi be nominated to sit on the Council. support of the large and small – 110058, India.

58 • DbI Review • JULY – DECEMBER 2005 Membership

Deafblind International Individual Membership I would like to join DbI as an individual member I would like to renew my DbI individual membership Member details Membership No. Title Surname First name Organisation Job Title Address (Line 1) Corporate Membership Address (Line 2) There are two tiers of Corporate Membership: Town/City State/County Large corporates Zip/Post Code Country Annual fees between €3,000 and €5,000 Telephone no. Fax no. Small corporates (Please include country and area codes) Annual fees between €300 and €1,500 E-mail address: We would like to join DbI as a Large/Small Are you: Corporate Member (please delete as appropriate) a deafblind person a family member a professional Does your organisation work primarily for/with: We submit an annual fee of € blind people deaf people deafblind people Corporate members are entitled to receive disabled people other (please specify) up to 25 copies of DbI Review. We would like-______copies in English Spanish Your contact details will be made available to DbI members (delete as appropriate) for DbI purposes but will not be made available for Member Details: commercial purposes. Organisation DbI Review (please check one box in each category) Representative A. I would prefer to receive DbI Review in: Address (Line 1) English Spanish Address (Line 2) B. I would prefer to receive DbI Review on: paper disk* (The disk version of DbI Review is supplied in text only format, on floppy disk) Town/City State/County Membership Fee please tick where appropriate Zip/Post Code Country I wish to pay an annual membership fee of €30 Tel: I wish to pay for 4 years’ membership at the discounted (please include country & area codes) rate of €100 Fax: Please waive my membership fee as I am unable to pay it (please include country & area codes) at present Email:

How to pay? In order to enable us to put your entire membership fee to use, we would kindly ask you to avoid sending us cheques as much as possible. By arranging your fee via bank transfer, we are able to keep banking charges to a minimum, thereby increasing the value of your membership fee. Naturally, for those of you who do not have access to this facility, we will be delighted to accept your fee by credit card, cheque or in cash. However, if it is really not possible for you to pay by bank transfer and you do have to pay by cheque or credit card, maybe you could do so for four years instead of just the one. Payment method Bank Transfer Credit Card Cheque B) Payment by Credit Card A) Payment by Bank Transfer Card type: VISA American Express Mastercard If paying by bank transfer, please make payment to the Card no: following account: Name of Bank: RABOBANK Expiry date Name on card: Address of Bank: Sint-Michielsgestel, The Netherlands Please note that credit card payments are made to Sense who Account Name: Instituut voor Doven: INZAKE DBI then credit DbI. Account Number: 11.29.09.825 C) Payment by cheque Swift Address: RABONL2U IBAN: NL31 RABO 0112 9098 25 If paying by cheque, please make cheques payable to ‘Deafblind International’ and send to the address given below. Date of Bank Transfer: If paying by Eurocheque, please make out cheque in euros. Please quote the Swift Address and IBAN number in your instructions for Bank Transfer (If this is impossible and you Please fax this whole page to 91-11-25618430 or return to: have to send a cheque or international postal order then please The Secretariat, Deafblind International, Post Box No 9601, contact us) Janakpuri, New Delhi – 110058, INDIA.

JULY – DECEMBER 2005 • DbI Review •59 Honorary Officers

Treasurer Graciela Ferioli President Ton Visser Hilton Perkins William Green Viataal Independencia 376 Lega del Filo D’Oro Theerestraat 42 Planta Baja Apto. ‘D’ Via Montecerno 1 5271 GD Sint-Michielsgestel 5000 Cordoba 60027 Osimo (AN) The Netherlands ARGENTINA ITALY Tel: +31 – 73 – 55 88 280 Tel: +54 – 351 – 423 4741 Tel: +39 -071 – 72451 Fax: +31 – 73 – 55 88 239 Fax: +54 – 351 – 423 4741 Fax: +39 – 071 – 717102 Email: [email protected] The World Association Promoting Email: [email protected] [email protected] Finance Office: Vice-Presidents Secretary Viataal Services for Deafblind People Bernadette Kappen Richard Hawkes Overbrook School for the Blind Sense International Information Officer: 6333 Malvern Avenue 11 – 13 Clifton Terrace Eileen Boothroyd, Sense Philadelphia Finsbury Park Email: eileen.boothroyd Small Corporate Members PA 19151 London N4 3SR, UK @sense.org.uk AUSTRALIA Preben Gundersen [email protected] USA Tel: +44 – 20 – 7272 2881 Celestine Hare Dovblindcentret Tonhild Strand Hauge Tel: +1 – 215 – 877 0313 Fax: +44 – 20 – 7272 6012 The Deafblind Association Tel: +45 - 99 - 31 89 00 Skadalen Resource Centre Fax: +1 – 215 – 877 2466 Email: richard.hawkes Tel: +61 - 3 - 9882 7055 Fax: +45 - 99 - 14 73 44 Tel: +47 - 22 - 703 702 Email: [email protected] @senseinternational.org.uk Fax: +61 - 3 - 9882 9210 Email: [email protected] Fax: +47 - 22 - 703 715 Email: [email protected] Vibeke Faurholt Email: tonhild.s.hauge@ [email protected] Danish Parents Association statped.no Alan Baynham Graeswangen 4 Knut Johansen Royal Institute for Deaf and 9330 Dronninglund Andebu Dovblindesenter Large Corporate Members Blind Children FINLAND Tel: +47 - 33 - 438700 Tel: +61 - 2 - 9872 0316 FRANCE NETHERLANDS SWEDEN Heikki Majava Fax: +47 - 33 - 438720 Fax: +61 - 2 - 9873 3870 Jean-Marc Cluet Ton Visser Sergei Sorokin The Finnish Deafblind Email:[email protected] Email: French Deafblind Consortium Viataal Resurscenter Mo Gard Association [email protected] [email protected] Tel: +33 - 1 - 4627 4810 Tel: +31 - 73 - 55 88 111 Tel: +46 - 122 - 23600 Tel: +358 - 9 - 54 95 35 18 SINGAPORE John Finch Fax: +33 - 1 - 4627 5931 Fax: +31 - 73 - 55 88 994 Fax: +46 - 122 - 23690 Fax: +358 - 9 - 54 95 35 17 Koh Poh Kwang Australian DeafBlind Council Email: [email protected] Email: [email protected] Email: [email protected] Email: kuurosokeat@ Singapore School for the (ADBC) kuurosokeat.fi Visually Handicapped GERMANY PORTUGAL UK Tel: +61 -04 - 2743 5243 heikki.Majava@kuurosokeat.fi Tel: +65 - 2503755 Wolfgang Angermann Antonio Rebelo Tony Best Fax: +61 - 3 - 9882 9210 Eeva-Marja Loukola Fax: +65 - 2505348 German Deafblind Consortium Casa Pia de Lisboa Sense Email: [email protected] The Service Foundation for Email: kohpohkwang@ Tel: +49 - 511 - 510080 Tel: +351 - 1 - 361 6650 Tel: +44 - 20 - 7272 7774 jfi[email protected] the Deaf ssvh.edu.sg Fax: +49 - 511 - 5100857 Fax: +351 - 1 - 363 34 48 Fax: +44 - 20 - 7272 6012 Sandy Joint Tel: +358 - 9 - 58 031 Email: [email protected]; Email: [email protected] Email: [email protected] SOUTH AFRICA Deafblind Association of Fax: +358 - 9 - 580 3657 Axel Hardenberg William Rowland SCOTLAND USA Queensland Email: kuurojan. Christoffel-Blindenmission South African National Council Gillian Morbey Barbara Mason Tel: +61-7-3831-4507 palvelusaatio@deaf-serv.fi Tel: +49 - 6251 - 131 247 for the Blind Sense Scotland Perkins School for the Blind Fax: +61-7-3393-0994 Fax: +49 - 6251 - 131 165 Tel: +0141-564-2444 Tel: +1 - 617 - 972 7502 Email: [email protected]. GREECE Tel:+27 - 12 - 3461171 Email: axel.hardenberg@cbm- Taula Masta Fax: +27 - 12 - 3461177 Fax: +0141-564-2443 Fax: +1 - 617 - 972 7354 gov.au i.org; Email: gmorbey@sensescotland. Email: Barbara.Mason@ Debbie Karasinski Hellenic Association of Email: [email protected] [email protected] Deafblind org.uk Perkins.org Senses Foundation Inc SPAIN Ragavi 27- Gyzi, Athinas 17 ITALY Bernadette Kappen Tel: +61 - 8 - 9473 5400 Dolores Romero Chacon SPAIN Kallithea 17573, Athens Rossano Bartoli Overbrook School for the Blind Fax: +61 - 8 - 9473 5499 APASCIDE Daniel Alvarez Reyes Telefax: 30-210-6440689 Lega del Filo d’Oro ONCE Tel: +1 - 215 - 877 0313 Email: [email protected] Tel +34 - 91 - 733 52 05 Tel: +39 - 071 - 72451 Fax: +1 - 215 - 877 2466 [email protected] IRELAND Tel/fax +34 - 91 - 733 40 17 Tel: +34 - 1 - 345 3697 Fax: +39 - 071 ñ 717102 Fax: +34 - 1 - 345 4157 Email: [email protected] AUSTRIA Finola Loughney Email: [email protected] Email: info@legadelfilodoro.it The Anne Sullivan Centre Email: [email protected] Christa Heinemann SWEDEN Tel:+353-1-289 8339 Osterr. Hilfswerk fur Sven Sjoberg Fax:+353-1-289 8408 Taubblinde Association of the Swedish Email: Tel: +43 - 1 - 602 0812 0 Deafblind (FSDB) [email protected] Fax: +43 - 1 - 602 0812 17 Tel: +46 - 8 - 399000 Email: INDIA Fax: +46 - 8 - 6595042 Networks [email protected] Bhushan Punani Email: [email protected] Acquired Deafblindness Congenital Staff Development BELGIUM Blind People Association [email protected] Network Deafblindness in Network Marlene Daelman Tel: +91 - 79 - 630 3346 Lena Hammarstedt Ges Roulstone Adults Network Pilar Gomez MPI Spermalie Fax: +91 - 79 - 630 0106 Nationellt Kunskapscenter for Sense East regional Centre Dominique Spriet ONCE Tel: +32 - 50 - 340 341 Email: [email protected] dovblindfragor 72, Church Street, Market 30 Rue Barbes [email protected] Fax: +32 - 50 - 337 306 Gopal Krishna Agrawal Tel: +46 87535940, Deeping, Peterborough, F-93600 Aulnay/Bois Siblings Network Email: Marlene.daelman@ Shikshit Yuva Sewa Samiti +46738030808 Lincolnshire PE68AL France Sabine Kersten mpi-spermalie.be Tel:+91-05542-242280 Email: lena.hammarstedt@ Tel: +01778-344-921 Tel: +33 - 1 - 48 69 68 64 Baal 73 Email: [email protected] mogard.se Fax: +01778-380-078 Fax: +33 - 1 - 48 69 68 64 CANADA B-3980 Tessenderlo Ms Anna Lena Steenson Email: ges.roulstone@sense. Email: spriet. Roxana Spruyt-Rocks KENYA Belgium Specialpedagogiska institutet org.uk [email protected] Independent Living Residences Geoffrey Atieli Phone/fax: +32 13 67 67 50 (The Swedish Institute for for the Deafblind in Ontario Sense International CHARGE Network EDbN Email: [email protected] Special Needs Education) Tel: +1 - 905 - 770 4948 Tel: 254 - 722 - 245861 David Brown Ricard Lopez Tactile Communication Tel: +46-15852300 Fax: +1 - 905 - 770 0598 Fax: (00254)- 20 - 782597 California Deaf-Blind Services, APSOCECAT & APASCIDE Working Group Fax: +46-15852317 Email: [email protected] Email: [email protected] San Francisco State University, C/ Almeria, 31 ATIC Bernadette van den Tillaart Email:[email protected] 1600 Holloway Avenue, ESP-08014, Barcelona, Spain Stan Munroe 15175 Prairie Road NETHERLANDS San Francisco, CA 94132-4201, Tel: +34-678-712-619 Canadian Deafblind and SWITZERLAND South Solon Bernard de Vries USA Fax: +34-678-782-600 Rubella Association Barbara Bettenman OH 43153 Visio, LSSB Tel: +1-415-239-8089 Email: [email protected] Tel: +1 - 519 - 372 0887 Schweizerische Stiftung für USA Tel: +31-55-5800695 Fax: +1-415-239-0106 Fax: +1 - 519 - 372 0312 Taubblinde, Heim Tanne Employment Network Telefax: +1-740-426-6728 Fax: +31-55-5800890 Email: [email protected] Email: [email protected] Email: [email protected] Tel: +41 - 1 - 714 71 00 Seija Troyano Email: bernadettevanden [email protected] Fax: +41 - 1 - 714 71 10 Communication [email protected] [email protected] DENMARK Email: barbara. Network Netherlands Knowledge Centre Interpreters Usher Network Birthe Laustrup [email protected] Jacques Souriau National Centre for Congenital for the Deafblind Development Network Carol Brill Catherine Woodtli CRESAM Deafblind Tel: +31-343-442744 Mirjam Leusink 500 Ballinteer Road, Dundrum SZB Taubblinden- und La Rivardiere Tel: +45 - 98 - 155313 Fax: +31-343-443232 [email protected] Dublin 16, IRELAND Horsehbehinderten-Beratung 52 rue de la Longerolle Tel: +353-1295-1387 Fax: +45 - 98 - 155323 Marlies Raemaekers Multiply Disabled (Rehabilitation) 86440 MIGNE-AUXANCES Email: [email protected] Email: [email protected] Bartimeus Visually Impaired Tel:+ 41 (0) 41 228 62 23 FRANCE Tel:+31-343-526650 European Network Usher Syndrome Study Helle Bang Fax:+ 41 (0) 41 228 62 25 Tel: +33 - 5 - 49 43 80 50 Fax:+31-343-526798 Kent Lundkvist Group (USSG) Nordic Staff Training Centre for Email: [email protected] Fax: +33 - 5 - 49 43 80 51 Deafblind Services Email: m.raemaekers@ Email: Jacques.souriau@ Ekeskolan Resource Centre Mary Guest Tel: +45 - 96 - 47 16 00 bartimeus.nl UNITED KINGDOM cresam.org Box 9024, S-70009, Orebro Sense Fax: +45 - 96 - 47 16 16 Pieter Hermsen Kate Lockett [email protected] Sweden 11 - 13 Clifton Terrace Email: [email protected] Kalorama Sense East Tel: +46 - 19 - 6762 151 Finsbury Park Fax: +46 - 19 - 6762 210 London N4 3SR Henrik Otteson Tel:+31024 684 77 77 Tel: +44 - 1778 - 344921 Email: [email protected] UK Videnscentret for Fax:+31024 684 77 88 Fax: +44 - 1778 - 380078 Tel: +44 - 20 - 7272 7774 Døvblindblevne Email: [email protected] Email: [email protected] Nordic Culture Network Fax: +44 - 20 - 7272 6012 Tel: +45 - 44856030 NORWAY Lone Poggioni Email: [email protected] Fax: +45 - 44856099 Evabritt Andreassen Via G. Deledda, 19 Email: [email protected] Regional Resource Centre for 06074 Ellera (PG) Deafblind/VKS Italy Tel: 0047 - 55 - 92 34 85 Telefax: 0039 075 5179 413 Fax: 0047 - 55 - 92 34 91 Email: [email protected] Email: evabritt.

60 • DbI Review • JULY – DECEMBER 2005