DbI Review 35 - Deafblind International

Focus on Latin AmericaNumber 35 • January–June 2005

Soc ial-Haptic CommunicationSocial-Haptic Communication forAcquired Deafblind People andFamily: incorporating touch andenvironmental informationthrough holistic communicationby Russ Palmer and Riitta LahtinenLast Autumn 2004 at the Nordic Staff Training Centre (NUD) in Denmark and atthe NUD Icelandic Conference there was an opportunity for Riitta Lahtinen(Communication Researcher Consultant) from Finland to present her Licentiate thesisresearch titled, ”Development of the Holistic Social-Haptic Confirmation System”This will form the basis ofRiitta’s final PhD workon Holistic andInteractive Communicationwith Acquired DeafblindPeople. This is a longitudinalcase study of the “Yes” and“No” feedback signals andhow they can become morecommonly and frequentlyused within the family withan acquired deafblind person.Russ writes…I believe Ritta’s work willinfluence our understandingof how we can improve thequality of our communicationbetween Deafblind, Usher’s,Acquired Deafblind people,Interpreters and professionalsworking in the respectiveareas. The methods andtechniques described herecould be further expandedinto other disability groupscreating a more holistic andinteractive environmentalview of the world aroundt h e m .One major problem ofhaving a dual-sensoryimpairment is the difficulty inperceiving and interpretingpeople’s body language at aspecific time or event. All toooften deafblind people missout on this informationincreasing their reliance onfriends, family or interpretingservices if these are available.The theories, methods andtechniques that Riitta hasidentified are not necessarilynew and have in fact beenaround for many years andare probably being usedwithin deafblind communitiesaround Europe. Until recentlythese communicationmethods have not beensystematically recorded,identified or studied in detail.Through her own associationswith various acquireddeafblind people around theworld over the past 20 years,Riitta has spent nearly 15years analysing and recordingher observations through herdiaries. When we met inSweden at a DBI conferencein 1991 and became a couple,we both started to analyseour own methods ofcommunication makingimprovements and trying tobridge the gap betweenspoken and Sign Language.As an Usher type 3 person Iuse spoken language as mymain form of communicationand up to my recent cochlearimplant operation in March2004 I was having to relyheavily on tactile or, correctlydefined by Riitta, (2003) asSocial-Haptic methods ofcommunication.This enabled me to pick upenvironmental, social andbody language from peoplewhether individually or ing r o u p s .Riitta explains…“Through analysing how weare moving and responding, Irealised, that we use our bodymovements “unconsciously”to respond to others. I usehere the word “Social-Hapticsystem”when I illustrate thecombinations of our tactileenvironmental information,kinestic movements and howwe use our personal spacewhen communicating.”6 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Social-Haptic Communicat ionRuss continues…One specific application is theability to assist interpreters bygiving them “shortcut”techniques while at the sametime providing communicationthat feels spontaneous orwhat Riitta defines as in realtime.This allows me to bepart of a social groupconversation without thefeeling of becoming isolatedbecause of the deafblindness.Furthermore, family, relatives,friends and professionals canalso use and learn thesetechniques relatively quicklyi.e. coffee, espresso orcappuccino coffee, all havetheir own symbolic notationwhich are clearly defined.Another example is when in asocial situation where peopleare laughing, teasing, cryingetc. these can also be appliedusing the Social-Hapticm e t h o d s .Riitta’s licentiate workfocuses predominantly on theapplication of the “Yes” and“No” signals, identifying thetheories, methods andtechniques and the variousstages of the developmentalprocesses. It took us 8 yearsas a couple to identify each ofthese stages and when weteach them in ourinternational courses, theyare automatically picked upby deafblind people andfamily members quickly. Ve r yoften deafblind people realisethat they have already beenusing similar methods buthave not perhaps discussedthis openly.Sometimes where there isan acquired deafblind familymember and a hearing andsighted spouse, thedeteriorating hearing andvision loss condition canaffect their long-termrelationship as a couple. I amsure that had Riitta and I notbeen open about ourcommunication difficulties,our relationship could havemost certainly ceased.Through analysing ourproblems together, discussingand applying a mixture ofSocial-Haptic techniques wehave identified these differentstages. I have to mention atthis point that Riitta has beenthe scientist and I have beenthe guinea pig!!Riitta explains…“One of the main issues ishow we use our language.Our culture is based on adistance communication andpicking up visual clues. Weunderstand our language ispart of the holistic action andthat is why we call it“functional communication”.We communicate throughusing various methods suchas speech and lip-reading,using hearing aids, radiomicrophone, Cochlea Implantdepending on the differentenvironmental conditions i.e.contrasting lightingconditions and backgroundnoises. The methodsemployed may be individuallyused or combined togetheri.e. Hands-on-Fingerspelling,Hands-on-Signing, BodySigns and Signals,Information through To u c hand Body Movements”.Russ continues…Observing everyday languagebehaviours with couples cangive us an insight intofunctional solutions throughanalysing the processes of thedifferent methods andtechniques used in aspontaneous manner.Environmental orientation isone aspect of the socialinteractive process of beingable to participate as amember of a group.Every time we leave ourhome environment thecommunication changes. Thequality of conversation fromboth parties’ point of viewwhen walking, travelling ordoing every day activities isvery important. The sametechniques can assistprofessionals and interpreterswho are working withdeafblind people.The process ofcommunication involves thesituation, context, space andorientation. It is not justsharing languageinformation, but alsoproducing non-verbalinformation such as real-timefeedback of emotions andbehaviours. It is a question ofunderstanding the wholephenomenon as part of thelanguage behaviour ineveryday life.Holistic interactivecommunication is aphilosophy where bothparties identify the wholecommunication situation andthe elements involvedthrough the whole process.Both parties react to theRuss Palmerand RiittaLahtinenJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 7

Soc ial-Haptic Communicationelements of their internal andexternal stimulus,environment, place, objects,activities and people aroundthem. Interactive means thatboth parties are sending andreceiving messages all thetime. This means couplesneed to have determination,encouragement and a lot ofenergy to find the rightmethod(s). For example, Riittaand I appear to use more oursense of touch and bodymovements when sharinginformation and situationst o g e t h e r. Social-Haptics canbe summarised into thefollowing areas:Hands-on methods (signing,signs, fingerspelling, blockl e t t e r s )•The application of socialquick messages givingsocial information (bodysigns, feedback, behaviour)•Expressing and receivinge m o t i o n s•Guiding through bodymovements and signals•Sharing environmentalorientation (body drawing)•Sharing art experiencesthrough movements i.e.kinestic informationConclusions: What theSocial-Haptic methodshas given us?Russ continues…“The more we use our bodyand touch, the more sensitiveI have become in receivingand interpreting touchmessages. Touch will give agreater quality to ourdiscussions and aninteraction, without it, theinformation does not havethe true value. It also savesour energy andmisunderstandings. To u c hwill give me information onhow other people arebehaving, their feedback,non-verbal clues andemotions very quickly. It isvery important to havefeedback to my responses.This means that I am able tobe more on equal terms withother people. For me, touchgives a feeling of security andwithout contact I feelisolated. Being open towardseach other is the key. ”Riitta explains…“The interpretation of themeaning of touch can bechanged and controlled byusing different neutral placeson the body, by applying thesize of movements andpressure. Physical realisationof the hand and skininformation can give differentnuances and interpretationsof touch. The areas of thebody have been enlargedduring the years. To be aparticipant is based on havingto learn different possibilitiesand creating the skills orreadiness of having and usingdifferent methods both athome and outside the homewith a range of people. Fo rus, repetition, being unsure,disturbing or interruptingsituations madecommunication morestressful and we wasted a lotof our energies. But using thebody when describingsituations, places anddifferent events or activitiesprovides the possibility to bean active participant.”ReferencesLahtinen, R. (2003) Developmentof the Holistic Social-HapticConfirmation System. A CaseStudy of the “Yes” & “No” –Feedback Signals and how theybecome more commonly andfrequently used in a Family withan Acquired Deafblind Person.Licenciate Thesis, University ofHelsinki, Faculty of Education,Department of Te a c h e rE d u c a t i o n .Lahtinen, R. & Pa l m e r. R. (2000)Holistic & InteractiveCommunication Methods withAcquired Deafblind People &Families – A Practical Approach.Joint Training Initiative, DistanceLearning Course (incl. Video).Manchester University, UK.Lahtinen, R. (1999) Holistic andInteractive CommunicationMethods. In Peckford, B. &Hawcroft, L. (Edit.) Proceedingsof an International Symposium inInterpreting for DeafblindPeople. Prontaprint, Durham, UK,64 - 65 .Lahtinen, R. & Pa l m e r, R. (1996)Holistic Family Communication.Spoken Language by Touch ismore than just Words. 4 t hEuropean Deafblind Conference,Espoo, Finland.Lahtinen, R. & Pa l m e r, R. (1994)Communication with UsherPeople. Deafblind Education,J u l y - D e c e m b e r, 7-9.For further informationcontact:Riitta Lahtinen LicEd. Med.Communication ResearcherConsultantEmail:riitta.lahtinen@kolumbus.fiWebsite: www.kolumbus.fi/riitta.lahtinenRuss Palmer SRAT(M)International MusicTherapistEmail:rpalmer2@tiscali.co.ukWebsite:www.russpalmer.com8 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

K a t h m a n d uKathmandu, Nepal…the next stepsYou will have read about Lone’s visit to Nepal, on behalf of the Danish ParentsAssociation, in a previous issue of DbI Review. This time Inger Rødbroe andBente Ramsing joined Lone to follow up on the work being undertaken…There were a lot ofreasons for this visit. Wewanted to continue thecollaboration between theDanish Parents Organisationof Congenitally Deafblind(DDBF) and the newly formedparent organisation of Nepal”Society for DeafblindParents”. We were planningto hold two workshops forthe deafblind children andtheir parents and another twoseminars for theprofessionals. We were alsogoing to look into thepossibility of developing alonger project which wouldinvolve training teachers andparents and supporting andopening the first school classand a residential home for sixdeafblind children inKathmandu.Working with thefamiliesParents with 12 disabledchildren between 7 and 30years attended the workshopand at the end of the day, wehad six children identified asdeafblind, or possiblydeafblind. Every oneparticipated in joint activities,with songs and movementsto enable all the children toparticipate. By using videorecording the families couldsee how their children wereresponding and it was easierfor the group to explain whythey believed some of thechildren might be deafblind.Inger Rødbroe workedalongside the parents toexplain how to begin todevelop communication anddaily life skills in a naturalw a y. Lone Poggioni had ameeting with the parentsabout what had happenedwith the parent’sorganisation since March2004 to share wishes for thefuture. The parents had adesperate wish to start to aschool unit for their children.Bente Ramsing worked witheach parent and child in anindividual way on support forindividual development.The ProfessionalsWith the professionals wecovered a lot of valuable andbasic information about bothcongenital and acquireddeafblindness, how toi d e n t i f y, assess and interveneand use differentcommunication methods.During these sessions weillustrated it with video of theNepalese children.The professionals at theseminar were very active,interested and participatedwell. They already have skillsand knowledge from thedisciplines borderingdeafblindness and this madethings much easier.Working withindividualchildrenJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 9

K a t h m a n d uMeeting thefamilies andchildrenProposalsAfter listening to theserequests at this workshop wemade a commitment:•To support the parentsorganisation “The Societyof Deafblind Pa r e n t s ”•To create the first schoolclass and a residential homefor 6 deafblind children inKathmandu and to startconsultant services – assoon as possible.•To give help in selecting andtraining staff.•To provide information tomedical teams, hospitalsetc. with a small brochureabout the specific disability,deafblindness.•To spread knowledge andawareness on deafblindnessoutside the Capital area.ConclusionDuring our visit toKathmandu we had thepleasure of meeting a lot ofpeople with a longing to dosomething concrete fordeafblind people. So we reallyfeel that our involvement inKathmandu/Nepal has amission and the project has agood chance of success.Man is man’s joy… An aesthetic approachto co-operation with congenitally deafblind persons.In this first article of a series, Klaus Vilhelmsen, uses this old Viking expression“Man is man’s joy” to introduce the exciting, but often not fully understood,concept of aesthetics. Over the years he has worked with colleagues at theCentre for Deafblind people in Denmark, in an interdisciplinary way, and involvedpractising artists with deafblind residents to develop an aesthetic approach.He also supports and values the cooperation of the Nordic Culture Network.IntroductionSome years ago we went on astudy trip. For a week wesailed a beautiful, oldwooden ship. The deafblindstudents had many sensoryexperiences on that trip – theheat of the sun, the smell ofthe sea and the wooden ship,the wind and so on. Sonja,one of the students, kept usawake until two o’clock in themorning by using her voice ina very varied and beautifulw a y. We thought sheexpressed her mood based onthe experiences she had had.P r e v i o u s l y, we thought thatshe used her voice mostly in as e l f-stimulatory way, but onthis trip we realised that sheused her voice as a personaland creative way ofexpressing herself. Weunderstood Sonja and theway she used her voice. Weunderstood this from anaesthetic angle.AestheticsBut how can we describea e s t h e t i c s ?The concept goes back to1 0 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

M an is man’s joy…Baumgarten in the 18thc e n t u r y. He wrote aboutaesthetics from aphilosophical point of view.For him aesthetics was“knowledge about thebeautiful and learning aboutthis …the learning about thesubstance of arts”. Therefore,art and aesthetics wereclosely connected.A Danish researcher, withinthe special pedagogical field,Søren Langager, says:“Aesthetics is about taste,experience andacknowledgement throughthe senses, with theexpression of taste (theemotion) as itscommunicative form.Originally aesthetics wasdescribed as “realising”through sensory experiences.H o w e v e r, I think it is in thewider understanding, and inSøren Langagers commentstoo, that we find mostinspiration in ourpartnerships with deafblindp e o p l e .It is still common toconnect aesthetics and art,but it has also become morecommon to regard aestheticsas beauty both in nature andas a part of our daily life. Asaesthetics take on a broaderdefinition, as a part ofexistence itself, it does notdepend on a conceptconnected solely to art, orindeed, the individual’s abilityto produce or understand art.You can have an aestheticexperience in the naturalworld. For instance, lets lookat the experience of taking awalk on the beach. You canfeel the wind against yourb o d y, you can enjoy the sunand the light, you can hearthe wind, and you can feelthat it is pleasurable to useyour body. An experience likethis can create a feeling ofbeauty and meaningfulness.For a walk on the beach to bean aesthetic experience wehave to be open and able torecognising it as such! Inapplying this widerunderstanding of aestheticexperience it becomes moreimportant in our lives. It willinclude our feelings, soul,spirit and our unconsciousmind.The core of our newunderstanding is that anaesthetic recognition is allabout sensory perception,sensation and emotion in ourrelationships with otherpeople and in our relationshipto the physically world.To describe sensoryperception, sensations andemotions as importantfactors in our aestheticrecognition can perhaps helpus to understand why wesometimes experience successand, other times, experiencethe opposite. To acknowledgethis as a vital part of everydayexperiences can lead us to anaesthetic view about beingtogether with deafblindpeople.Dorthe Jørgensen, a Danishresearcher in this field, saidthat the kind of aestheticswhich is about “life art” (i.e.how you create your life in anaesthetic way) is the mostpopular kind of aestheticsthese days.PedagogicalconsequencesWhen we use the aestheticperspective as part of thebasis for co-operation withdeafblind persons there willbe at least two pedagogicalc o n s e q u e n c e s .One consequence is thatworking together withdeafblind persons is not justabout compensating forfunctional disabilities. Wehave to look at the humanbeing behind the handicap,and give this person theopportunity to grow andexpress herself.Another consequence ofchoosing the aestheticperspective, is that we haveto give the deafblind personthe opportunity to experiencesensation, refine this sensingprocess and refine thissensory expression. In thisway other people can relateto the ideas of deafblindpersons. In other words,communication can bee s t a b l i s h e d .In giving the deafblindpersons an opportunity toexpress their experiences in anon-linguistic way, thedeafblind person cancommunicate to hearingseeingpeople with their ownexpressions about theirattitudes, feelings andexistential experiences. In thisway we can learn from them.Cooperationwith artistsBased upon this way ofthinking we establishedcooperation between Sonja,the young lady from the boat,and a multi-artist, CathrineLervig. She is an educateds i n g e r. During the past 10years she has worked with analternative way of using hervoice. For instance she singswithout words.Cathrine describes her firstmeeting and co-operationwith Sonja in an article in theDanish magazine “Deafblind-News”. She describes it liket h i s :”When Sonja arrived wetouched each other as hello.JA N U A R Y – JU N E 2 0 0 5 • DbI Review • 1 1

Ma n is man’s joy…RiccardoMorrison andMarianneRusbjergI waited. Sonja used hervoice. We touched each otheragain. In the beginning it wasjust like improvising withanother musician. In thebeginning we got to knoweach other and suddenly wehad established contact.Sonja turned her face directlyto me in a big smile fromdeep inside of her. She felt ittoo – the contact, the joy andthe surprise of this kind ofc o n t a c t .Now that the contact wasestablished, we were equal.For one hour we concentratedand spoke to each other.Sonja has a very expressivevoice, voluminous anddynamic. We changedbetween talking and singing.Or to be more precise wewere between singing andtalking. The feeling wasexactly like improvising withanother musician”.After her meeting withSonja, Cathrine said “I askmyself many questions. Fo rinstance – where is theboundary between music andlinguistic communication?What kind of exchange takesplace between musicianswhen they play? What ismusic? What would happen ifSonja got a musical reply toher splendid communicationskills? What can Sonja teachu s ? ”So how should werespond?We need to supportdeafblind persons’ creativity.We can benefit from workingwith artists in many ways. Ithink they can,•inspire new possibilities andnuances in the meetingbetween deafblind peopleand others,•open up our senses for newexpressions, both fromdeafblind people, ando t h e r s ,•work by clarifying thesee x p r e s s i o n s ,•help in creating solidarity,“As human beings we only have two – andnothing but two – ways of organising our accessto the world. The one is through understanding,and the other is through sensation. ” K.E. Løgstrup•communicate on a nonlinguistic level.Dancing!During the last 20 yearsRiccardo Morrison haspracticed contactimprovisation dance. It isdance with and for people,who like to dance in acommon forum and use thedance as a commonlanguage. People who movedifferently have inspiredRiccardo. He says “We allhave some strange,remarkable movements,which has become a habit forus. We must accept thesemovements, because they area part of our nature and ourb o d y. In connection to ourbodily expressions RiccardoMorrison reminds us that weare all unique.Riccardo has for severalyears worked together withdisabled people. He wants toteach these people so theycan encounter and feel theirb o d y, and to undo anddisolve their tensions. Thepurpose is to obtain selfknowledge and personald e v e l o p m e n t .The technical basis forRiccardo’s work is contactimprovisation dance. Thisform of dance is based uponimprovisation, dialoguethrough movement, weightand vigour. The form of dance1 2 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

M an is man’s joy…“The aesthetic dimension containsmany of the same qualities as “thetime of our life” – the sensuous, theunique, the ambiguous ”talks about the living,intelligent and sensing body.In contact improvisationdance, there is in the principlethat nothing is right orwrong. The dance form isbased on techniques, whichcan be used by anybody –whatever their disability maybe.In November last year wearranged a workshop withRiccardo Morrison. Weworked on the basis I havejust described, and weworked with differencesrather than homogeneousmovements. All movementswere understood as danceand we tried to catch all thesmallest movements. Therewere no wrong movements.Riccardo says that everyone ina room contributes something– they inspire each other!Society and thedigital worldBut why this interest ina e s t h e t i c s ?It has always been thatsupport from society todisabled people has beenbased on the values, normsand ethical rules whichcharacterise it in that periodof history. Today old patternshave broken down,authorities are not what theyused to be. The individual hasto find his own way andvalues. Therefore the ongoingdevelopment of the society ismore likely to pose a questionabout how the individualexpresses him or herself, tomake up his or her mind andtake action. The developmentof digital technologies alsopushes us in that direction.With all the possibilities thedigital world creates, it will beessential for the individual tobe able to find his or her wayin this world. It will beessential to reveal themselvesand make themselves“attractive” to other peopleso that they can take part inthe developing dialogue. Fo rthe weakest citizens it will behard to face this challenge.Ole Thyssen, The Danishp h i l o s o p h e r, says that weneed aesthetic competencenow in this society, because“renewal requires people whoare not afraid to trust theirsenses and feelings and giveshape to experiences whichm a y, or may not, becomeshared experiences”. One cansay “that the aestheticdimension contains many ofthe same qualities as “thetime of our life” – thesensuous, the unique, theambiguous”.To d a y, the concept ofaesthetics, as a philosophicaland pedagogical concept,underlines the meaning ofsensory perception andemotions. This occurs in themeeting between oneself andanother and in our approachto the world. Therefore, inour understanding, anaesthetic paradigm points outthat it is through confidenceand respect we fosteri n d i v i d u a l i t y. Our own powerover the way we live our livescan enrich not only theexistential meeting butcultural solidarity too.EqualityWe would like deafblindpeople to have theopportunity to be truly equalmembers of society and havethe possibility andexpectation to contribute tothat society as well. I think wehave to help them tocontribute in a way that otherpeople find exciting andworth while. The process andthe joy of working withaesthetic expression is veryimportant even if artefactsare not created. But, if thedeafblind person wants hiswork to be a contribution tosociety and the commonculture, then the product isimportant too, so otherpeople find it excting andworthwhile. In this waydeafblind people can bevisible and equal in thes o c i e t y.Klaus VilhelmsenJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 1 3

K angaroos are my life‘Kangaroos are my life’ – the lifeand work of Doris HerrmannDoris Herrmann’s biography is above all the story of a woman who refused to bediscouraged by the difficult circumstances of her life. Iris Schelker tells us moreDoris withone of herkangaroosDoris was born deaf in1933 in Riehen (nearBasle). When shebecame a young adult thedoctors noticed that inaddition to her deafness shewas also suffering fromretinitis pigmentosa (adegeneration of the retina).Later on, her sightdeteriorated to such anextent that she was no longerable to read at all. Since then,Doris has depended fully onher reading device. Over thenext years other aids were tobecome her loyal,indispensable companions.To d a y, Doris uses ‘Lormen’to communicate, since shecan no longer lip-read. On theother hand, she is able toanswer using speech.After finishing school, herenormous willingness to learnled her to study graphics andtextiles at the college ofapplied art in Basle. Duringthis period she discovered hercreative talents and abilities.E v e n t u a l l y, she became anactive member of the ‘Swisssociety of fine artists’. Lateron her work was exhibited invarious galleries and wasawarded a citation for herartistic and scientificc o n t r i b u t i o n s .She has seen herautobiography and a secondbook published; a third bookis also in the pipeline.As a young girl she cameinto contact with kangarooson a visit to Basle Zoo. Thedirector there allowed her toenter the kangaroo enclosureand study the distinctivebehaviour of these animals. Itwas to mark the start of herintensive research into thisfield. She later travelled toAustralia on a number ofoccasions, where she met anumber of internationalscientists. After living forweeks and months at a timeamong families of kangaroos,her observations led her todiscover and fall in love withthe many natural beauties ofthe continent so that this partof the world became hersecond home.Her own research,particularly into the field ofpouch cleaning, rumination,group behaviour and feedingearned her internationalrecognition and despite hergrowing disabilities of sightand hearing, she was able totake part in scientificconferences with the aid ofsign language interpreters.Many established zoologistsfollowed the example ofProfessor Grzimek in referringto the Basle researcher andher work entered intoscientific literature. But forDoris, the kangaroos were farmore than just being anobject of scientific interest.Today she says: ‘They’re suchwonderfully soft and gentlecreatures to touch’.E v e n t u a l l y, Doris wasreluctantly forced to abandonher field observations due toincreasing problems with hersight. But she has continuedto work tirelessly and is inregular e-mail contact withcorrespondents from all overthe world – she also writes inE n g l i s h .In her extremely impressivelife, her work has had a hugeimpact on others, Doris’ storygoes to show that humanfate does not merely have tobe passively accepted as such,but that people can make adifference to their own lives.Iris SchelkerSocial workerSZB Counselling Servicesfor Deafblind People, BasleWith contributions by DorisHerrmann: doris.herrmann@dplanet.ch1 4 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Dea fb lind Per sons in Croat iaPer Aspera Ad Astra!…for Deafblind Persons in CroatiaThe Croatian Association of Deafblind Persons, Dodir, has celebratedits 10th birthday…The story of Dodir beganin distant Sweden, atthe heart of Dalarnav a l l e y, where dreams wereborn. It hasn’t been easy orsimple for Dodir, as a nationalvoice of deafblind people inCroatia, to begin to pave theway to a brighter future fordeafblind persons. Still,dreams turned into reality!Over the past ten years wehave moved from completeexclusion to the inclusion ofdeafblind persons intoc o m m u n i t y.Let’s remind ourselves ofsome significanta c c o m p l i s h m e n t s– deafblindness wasrecognized as a specialcategory of people withdisabilities and some rightsSonja Tarczay, President of Dodirof deafblind persons weree n s u r e d .– Dodir‘s support service wasestablished for all deafblindpersons in Croatia– A Declaration on EqualOpportunities for DeafblindPersons was passed,– Dodir had the premiere ofour play Cinderella in thecity theatre Gavella, inwhich deafblind personswere the actors– We held the 3rdInternational ScientificSeminar and the 5thEuropean Summer Holidayfor Deafblind Pe r s o n s .Today the CroatianAssociation of DeafblindPersons, Dodir, is a symbol for“Over the past ten years wehave moved from completeexclusion to the inclusion ofdeafblind persons into thecommunity ”coming out of darkness andsilence. Many people whoattended the birthdaycelebration in Zagreb, and theceremonial dinner andbirthday ball witnessed therecognition Dodir has gainedover the past ten years.Around three hundred peoplecontributed to the majesticevent, and celebratedtogether with stylish red andwhite balloons, table clothsand ribbons, because red isthe symbol of Dodir.The ceremonial openingwas marked by the anthem ofdeafblind persons in Croatia,Dodir Ljubavi (Touch of Love),whose lyrics were written byÆeljko Bosilj, a deafblindperson. The anthem wasperformed in three differentways – in tactile signlanguage, in sign languageand vocally, by deafblindDodir support servicemembers from Zagreb andOsijek. Mrs. Sanja Ta r c z a y, thePresident of Dodir, made theopening speech and both theDeputy Prime Minister ofCroatia and the Mayor ofJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 1 5

Deafb lind Per sons in Croatia“It was a night of glamour, aspecial night for all deafblindpersons in Croatia, the nightthat witnessed that dreams canbe realized ”Zagreb made speeches ofwelcome to the group.William Green, the presidentof Deafblind International,and Lex Grandia, SecretaryGeneral of World Fe d e r a t i o nof The Deafblind, both friendsof Dodir, made special andwarm speeches. Members ofthe theatre studio ofdeafblind persons performedone act of the play,Cinderella.There were severalmarvellous surprises as well!We received a great presentfrom the Ministry of Healthand Social Welfare. It was acheque for half a millionkunas for the adaptation ofDodir office space. We alsoreceived the certificate for“extraordinary achievementsin advancing the rights ofdeafblind people in Croatia”from Sense International. Wesang our thanks and afteranother inspirational closingspeech the dancing began. Asthe red and white balloonswere falling around, Mrs.Sanja Tarczay and Mr.Zvonimir Costar, the Head ofthe City Health, Labour andWelfare Department led thedancing to the sounds ofw a l t z .We danced and sangt o g e t h e r, with all oursupporters from all parts ofs o c i e t y, until it was time toblow out the first ten candleson our very special birthdayc a k e !It was a night of glamour, aspecial night for all deafblindpersons in Croatia, the nightthat witnessed that dreamscan be realized. And we areonly ten years old…Lex Grandíaof WFDbThe teamfrom Dodir1 6 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

C E S S AC E SSA – Special EducationCentre for deafblind childrenand teenagersWe continue our series of articles about work with deafblind children andyoung people in France. This time Christine Tap describes the work of CESSACESSA is located on theoutskirts of Po i t i e r s ,and is currentlyattended by 29 children, 4 to20 years old, coming from allover France. This is because ofthe low incidence of thishandicap.All the children attendingCESSA have a dual sensoryloss, seriously affecting theirhearing and sight, so they canb e :– profoundly deaf and blind– profoundly deaf andpartially sighted– hearing-impaired and blind– hearing-impaired (hard-ofhearingto severely deaf)and– partially sightedIn addition, they could haveone or several otherassociated impairments( m o t o r, intellectualimpairment, or personality orbehaviour disorders, but alsoother sensory impairments).Most of them needconsiderable medicalsupervision and daily care.As to the origin of theird i s a b i l i t y, the children arecurrently distributed in thefollowing manner:AetiologyNumberof childrenCongenital rubella 3CHARGE syndrome 8Infantile REFSUM syndrome 2WOLFRAM syndrome 1KID syndrome 1USHER syndrome 4Aftereffects of encephalopathyand prematurity 5Unknown aetiology 5Two thirds of the currentapplications for admission arefrom youngsters in a situationof emergency, who haveeither been deprived of anysupport – sometimes forseveral years – or are gettingto the end of the standardintegration school systemand, in order to progress,need a very individualizedsupport using very specialtools, and/or multipletechniques. (Sign Language/Braille) So, those who arearriving now are youngsterswho are losing their sight, orcoming out of psychiatriccare, or for whom the originalschool “gave in” because ofthe complexity of theirhandicap and the supportn e e d e d .For several years already wehave tried to be “there” forthese youngsters and theirfamilies. However, this year,we will have to reject manyapplications, because CESSAalready has 4 pupils morethan the number authorizedby the social securitya p p r o v a l .Characteristics ofChild CareOur educational, teachingand therapy project is basedon having the child in thecentre of the system, not inorder to “repair” hishandicap, but in order to helphim/her to live with it in thebest possible way. Our aim isto guide him/her towardsadult autonomy and, whereDirector ofCESSA,Christine TapJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 1 7

C E S S A– Autonomy in everydaylife: we have to get thechild to take initiatives, tobe able to manage byh i m s e l f …– Socialisation: in meetingother people, the childconstructs his identity, helearns from others thanksto imitation, he measuresthe rules of life, heconfronts the limits, but healso learns how to copewith his conditions, toproject himself and copewith the risk. Therefore oneof our tools is integrationinto the ordinaryenvironment: outdooractivity centres, schools,restaurants, shops,swimming-pools, libraries,toy and game libraries,leisure clubs, contacts withother children havingdifferent disabilities too.Gymnasiumand play spaceHaving fun!possible, towards inclusion orat least a partial integrationwithin the ordinaryenvironment. Therefore, thiscare is based on the searchfor consistency in the actionstaken for the child in order toguarantee the achievement ofthe Individual Project. For thisreason, services aredeveloped according to thefollowing teaching andeducational principles:•care must be veryindividualized•regular assessment of thechild needs and of theparents expectations•partnership working withthe family on theindividualized programme•inclusion in ordinaryenvironments every time itis possible and in conditionsaccessible to childrenThis implies a close cooperationwith the families inthe construction of theindividual programme,therefore a need to appointsomebody to be responsiblefor this management : theReferent. However, we haveto adapt every tool to thesensory profile of each child,and to regularly check theobjectives, the means usedand the teaching methodsi m p l e m e n t e d .Our working lines are asfollows:•at education level– Discovering thesurrounding world:making the world moreaccessible, therefore lessfrightening for the children(after installing anemotional security toarouse the sense ofc u r i o s i t y )•at teaching level:– Developing the child’sknowledge, always givingpriority to knowledgeuseful for his autonomy,which can be reinforced ineveryday life– Developingcommunication tools:– LSF (French signlanguage) for most of thechildren, spoken Fr e n c hfor those with sufficienthearing and abilities– Pictures, photographs1 8 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

C E S S A– Symbol objects– Visual or tactilep i c t o g r a m s– Words with pictograms– Written French and Braille•at therapy level:– Evaluation of knowledgeand of disorders byassessments and/oro b s e r v a t i o n s– Evaluation of a cognitivelevel and of an emotionalp o t e n t i a l– Whenever necessary andpossible, a therapeuticsupport (with the consentof the youngster and of hisfamily)– Medical specialistassessments ands u p e r v i s i o nThese various services couldbe represented as follows:MedicalmonitoringVarious appointmentsEmergency ManagementMedication distributionYearly supervisionAcademicPersonalized curriculum(French, Maths,General Knowledge,French Sign Language, Braille)Awakening activitiesInformation/NewsSymbolization and MotricityData ProcessingPsychologicalmonitoringSocialautonomyTravelsAccomodationFoodGestion de soinsSocialisationIntégrationSports andphysicalexerciseStimulationresourcesVocationalRattanCaneworkSubcontracted workGreen spacesTraining sessionsRehabilitationalPsychomotricityOrthopticsSpeech TherapyOccupational therapyLocomotionTherefore the child’stimetable is defined by halfdays and consists of activitiescorresponding to the childn e e d s .The services offered to thechild are defined in close cooperationwith his family. Infact, thousands of times, weobserved that the resultsobtained with the child weremuch better when his familyis a participant in theaction! For this reason,parents are included innumerous stages oftheir child’si n d i v i d u a lp r o g r a m m e .In order to dothis, and in spite ofthe geographicaldistance betweenmany families andus, 3 times a yearwe organise aMeeting We e k e n d ,during which thisconstruction work iselaborated between thefamily and the professionaleducational team. This is alsoa means of developingactivities amongst parents,teachers, and children, withthe aim of showing themwhat we are doing with theirchild. Those weekends alsogive families an opportunityto meet and share. It allowsthe child to put thispartnership in a concreteform and to see that dad,mum and his referent are allworking together for him tos u c c e e d .Current researchF i n a l l y, at CESSA we are nowinitiating research intoCHARGE syndrome, aiming atfinding the links between themulti-sensory impairmentsand the psycho-emotionaldevelopment of thesechildren. Currently, it involves10 youngsters and, later, itwill involve others in order tocheck the relevance of thefirst findings. We shall keepyou informed of our findings,but we are going to presentthe first items at the next DbIInternational Conference, inAugust in Slovakia.A part of our team is alsotrying to develop a pictogramd i c t i o n a r y, from drawings towords with pictograms. Ofcourse, it is available to anyinterested educational team!JA N U A R Y – JU N E 2 0 0 5 • DbI Review • 1 9

Genetic re se archSo CHARGE really is a syndrome!David Brown, California Deaf-Blind ServicesAs I wrote in theCHARGE Networkcolumn in the lastissue of DbI Review, this hasbeen an exciting and eventfultime for anybody with aninterest in CHARGESyndrome. The 2004discovery of a gene thatcauses CHARGE has endedthe long debate aboutwhether this is a syndrome ormerely an association offeatures, and has given us theanswers to some of thequestions that are oftenasked about CHARGE. Thepublication of the CHARGEissue of the American Journalof Medical Genetics in Marchof this year representsanother step forward, thistime in our ongoing efforts todefine whether or not thereare behaviours that areunique and specific toCHARGE, what they mightmean, and how best to dealwith them. I will try to give asummary of both thesedevelopments in the clearestway that I can.‘The CHARGE gene’Last summer rumours beganto circulate that a CHARGEgene had been found, andthese were confirmed onAugust 8th with thepublication of an article onthe website of natureGenetics1. The discovery wasmade by a team at theUniversity Medical CenterNijmegen in the Netherlands,who had tested blood from17 children with the CHARGEAssociation and found that10 of the children had amutation on the seventhgene of the chromodomain,named CHD7. Subsequentmore detailed study of thisgroup in a diagnostic lab isreported to have identifiedthe CHD7 mutation in all butone of the children2. Sincethat time larger numbers ofpeople have been tested inseveral countries, either aspart of research studies or ona private basis, with similarlyconvincing results. Geneticistsare advising that CHD7 is not‘the CHARGE gene’, rather itis a major CHARGE gene, thefirst to be discovered butprobably only one of whatmay be several CHARGEgenes yet to be identified. Asa result the old diagnosticcriteria (based uponidentifying the presence orabsence of certaincharacteristic CHARGEanomalies in the individual)still apply, and they can beused to determine that aperson has CHARGE eventhough that person’s bloodmight not have been testedyet, or even if it has beentested and the mutation ofCHD7 is not present.3 Thislatter case would suggestthat some different genemutation, a ‘CHARGE gene’that we cannot yet identify,has caused the CHARGEanomalies in this person.One of the Dutch team, Dr.Conny van Ravenswaaij, hasexplained that ‘Someembryonic genes helporchestrate properdevelopment of verysophisticated organs like theheart, eye and semicircularcanals. The CHD family ofgenes play very importantroles in regulating whichgenes need to be used atwhich time, especially in earlyembryonic development.’4This organising andregulating function of thechromodomain genesexplains why CHARGE is sucha multi-organ syndrome, whyso much can go wrong soearly in the pregnancy, andalso why the same geneticmistake can produce suchwidely differing patterns anddegrees of malformationfrom person to person. Whilethere is still much that we donot know, some firmstatements have been madefollowing the discovery of theg e n e :•if the CHD7 mutation ispresent in the child withCHARGE but not in eitherparent (in other words if itis a new, or ‘de novo’,mutation, as most cases arethought to be) thenunaffected siblings cannotbe carriers and will have noincreased risk of having a2 0 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Ge netic r esearchchild with CHARGES y n d r o m e•any couple with a child withCHARGE has a 1-2%recurrence risk of havinganother child with CHARGEbecause, in a very smallnumber of cases, the genemutation can be in the cellsthat make eggs and spermrather than in a single eggor sperm produced by aparent (this is calledgonadal mosaicism). If aspecific mutation isidentified in a parent thenpre-natal diagnosis cannow be made to see if theCHD7 mutation is present inany new fœtus. There is nogene therapy that canprevent CHARGE anomaliesdeveloping if the genemutation is identified in afœtus, and no medicalprocedure that can be usedto cure the condition afterbirth either.•any person with CHARGEwho has the CHD7mutation has a 50% chanceof passing on the mutationto every child that theyp r o d u c e•we do not yet have any ideahow to predict the severityof CHARGE in any foetusshown to have the CHD7mutation by pre-natalt e s t i n g•we cannot yet make anypredictions about thedevelopmental pattern andeducational needs of anyindividual with CHARGE onthe basis of whether or notthey have the CHD7m u t a t i o nSome parents andprofessionals have alreadyexpressed to me theirdisappointment that the genediscovery does not enable usto ‘cure’ CHARGE, but I thinkit is unrealistic to have suchvery high expectations at thisearly stage in our explorationof the genetic basis of thecondition. I am sure that wewill look back on thediscovery by the Dutch teamas a major event in ourgrowing understanding ofthis most complex ofsyndromes. Meanwhile weneed to keep seeking theright questions to be asking.The American Journalof Medical GeneticsCHARGE issueAs a direct response to theincreasing concerns expressedby families and teachersabout the behavior patternsof older children and youngadults with CHARGE, the2003 International CHARGESyndrome Conference inCleveland, Ohio featured afull day Symposium t h a tlooked at neurobehaviouralissues associated with thecondition. The presenters(American, Australian, British,Canadian, Dutch, French andNorwegian) included parentsand professionals from thefields of genetics, paediatrics,a u d i o l o g y, education,p s y c h o l o g y, andn e u r o p s y c h o l o g y. The varietyof styles, and viewpoints andmethodologies was wide, anda great many challenges andquestions were posed bythese presentations. Almosttwo years later, in March2005, the American Journalof Medical Genetics publishedpapers based on thesepresentations, plus severalothers, making a collection oftwenty articles in total,enough to account for theentire edition of the journal( Vol 133A Issue 3 March 15th2005). The American Journalis to be congratulated fortaking the unusual step ofdevoting an entire issue to asingle syndrome, andfeaturing so many authorsfrom outside the field ofgenetics, focussing uponbroad behavioral issues ratherthan any narrower medicalconcerns. Thanks are also dueto the CHARGE SyndromeFoundation which not onlymade the original 2003Symposium possible, but hasalso made the entire CHARGEissue of the American Journalof Medical Genetics freelyavailable on its website atw w w. c h a r g e s y n d r o m e . o r gAnybody with an interest inthis topic (not only those witha direct interest in CHARGESyndrome) should visit thewebsite and prepare for manyhours of absorbing reading!References1 Vissers L et al (2004)Mutations in a newmember of thechromodomain gene familycause CHARGE syndromeh t t p :// w w w. n a t u r e . c o m /n a t u r e g e n e t i c s2 Presentation by Dr. Connyvan Ravenswaaij, GermanCHARGE Conference, Köln,May 6th 20053 Davenport SLH, Hefner M(2004) We’ve found a genefor CHARGE – So NowWhat?? CHARGE AccountsVol 14 No 3, Fall 2004 p84 van Ravenswaaij C (2004)A Major CHARGE Gene HasBeen Found CHARGEAccounts Vol 14 No 3, Fa l l2004 p6JA N U A R Y – JU N E 2 0 0 5 • DbI Review • 2 1

E ast Afr icaA journey of a thousand milesstarts with a single step …Penny May Kamau reports on the barriers to education for deafblind childrenin East Africa, in spite of improvements in government policy. Societalperceptions of disability and lack of targeted funding for deafblind childrenis placing undue pressure on families who have difficult choices to makeabout the life chances of their children.Governments in Ke n y a ,Uganda and Ta n z a n i aare working hardtowards “Education for all”and great strides have beenmade in increased schoolenrollment in the last fewyears. In all three countrieseducation is now “free” andmany children who had neverseen the inside of a classroomare now enrolled, but what isthe situation for children witha disability and morespecifically those who ared e a f b l i n d ?The Ministries of Educationin the three countries haverecognised that deafblindchildren need their ownschool programmes and haveillustrated this by helping totrain and post teachers to thevarious deafblindprogrammes. In spite of thish o w e v e r, there are still manydeafblind children who, eventhough they have beenassessed and placementmade, are not in school. Whyis this?When parents firstunderstand that their child isdeafblind, acceptance cantake a long time. Someparents will never accept thatreality and there are manyexamples where it results inseparation or divorce whenone parent decides to leavethe family. In such cases theremaining parent is left tocope alone.In a society wherewitchcraft is still a potentforce, the community mayalso be hostile and“The Ministries of Education in the three countrieshave recognised that deafblind children need theirown school programmes and have illustrated this byhelping to train and post teachers to the variousdeafblind programmes ”accusations are flung at thefamily so that they believeand blame themselves as thecause of the child’s disability.In such cases it is unlikely thatthe child will ever move outof the home. The shame andfear can cause the child to behidden away from view butfortunately many parentschoose to accept the childand start to look forinformation and advice onhow to cope with thes i t u a t i o n .The first step is oftenmedical intervention, whichcan be traumatising and alsoc o s t l y. Parents are often toldthat the child will “never beable to do anything forh i m s e l f” or “don’t waste timeon this one”. Others pay outlarge sums of money forcorrective eye or heartsurgery and even much moreto buy adaptive devices.All this is a financial strainon the family. Many parentsgive up at this stage butothers, at least in Kenya andUganda where it is available,do persevere and find theirway to the educationassessment services wherethorough assessment of theeducational needs of the childare carried out. In Ta n z a n i aassessment of children with adisability is only available at2 2 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

East Africasome medical centres or in afew special schools.Again costs are involved.The assessment may takeplace a long distance fromhome, where they aresometimes told to come backanother time, meaning moretransport costs; many nevergo back! At the end of theassessment there should be areferral letter for educationplacement, which in the caseof deafblind children in Ke n y acan be at one of four placesor in Tanzania at only oneplace in the country. For manydeafblind children theirchance of any education endsh e r e .Unlike children with nod i s a b i l i t y, deafblind childrencannot go to the local school.Deafblind services may be 50km, 250 km or even furthera w a y, and if financial supportis not available, either due tototal lack of money ornegative attitudes within thef a m i l y, then the child willnever go to school.Take the case of Rose. Roseis 9 years old and lives withher father in Embakasi, aNairobi suburb in Kenya. Hermother lives back in the ruralarea. Rose is deafblind andhas additional disabilitieswhich means she needs helpwith many things includingfeeding, dressing andtoileting, but in spite of thisshe still has the capacity tolearn if given the chance.Rose has been assessed andrecommendations made thatshe attend a programme fordeafblind children. Theoptions available are KilimaniUnit, a day programme inNairobi, or Kabarnet Schoolfor the Deafblind, which is aboarding school, based in theRift Valley province. To accessKilimani Rose needs someoneto take her to school andfetch her each day plusmoney for the transportwhich amounts to at least ksh100 per day. Much of thetime this money is notavailable. To access Kabarnet,Rose would need a list ofrequirements includingpersonal effects such as soap,oil, clothes, and also moneyfor transport.The family are not able tomanage this so Rose is kept athome without anyprogramme that can help herto get skills to make her moreindependent. Rose is just oneof many children with adisability who, because ofp o v e r t y, cannot access school.Other parents choose not tosend their disabled childrento school due to lack ofawareness and culturallybased negative attitudestowards disability.If more information toincrease awareness ondisability was available toeveryone, as well as extensivecounseling services for someparents with disabledchildren, parents could thensee their children in a morepositive light and appreciatethe value of medicalassessment and educationalp l a c e m e n tA single step….In Tanzania the governmenthas set aside funds to covertransport costs for disabledchildren who attend schoolsoutside their locality. This is agreat step in the rightdirection and we would liketo see this duplicated inKenya and Uganda. Pa r e n t sshouldn’t have to incur extracosts just because theyhappen to have a child with ad i s a b i l i t y.Contact: Penny May-KamauEmail shiapmk@wananchi.comJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 2 3

Hele n Keller AwardFilm maker wins Helen Ke l l e rInternational Award!Graeme Thomson reports on another fine event…Winner of 6th Helen KellerInternational Award: TheLost Reels by MatthewHumphreys, WalesThe sixth Helen Ke l l e rInternational Award hada spirit of reaching outand communication at itsheart, best represented in thequality and diversity of thework displayed at the CollinsGallery in January andFe b r u a r y. For the first time inits 16-year history with SenseScotland, a short film waschosen as the winning piece.‘The Lost Reels’, a Super 8Film by Welsh artist MatthewHumphreys is about hisf a t h e r, who is deaf andrecently became blind.From the judging process atthe start of the exhibition’s 5week run, to the awardceremony on the 31stJ a n u a r y, the Helen Ke l l e rInternational Award attracteda great deal of interest fromthe public and press. Thejudges were MonicaCallaghan from the HunterianMuseum, artist Kenny Hunter,Pauline McLean from the BBC,Alex Robertson from theMuseum of Transport andKirsty White from GlasgowCity Council. From a total ofover 220 entries it wasdecided to increase theshortlist number to 9, areflection of the quality of thew o r k .Most of the shortlistedartists were able to attend theaward ceremony. One of thehigh points was thepresentation each madeabout their work, before thewinner was announced. Theywere preceded by Pro Vice-Principal of StrathclydeU n i v e r s i t y, who own theCollins Gallery; ProfessorJames Love BA MSc PhD,pointed out that they were,”so impressed by the quality ofthe works on display that theuniversity has actually boughto n e . ”Speaking about her work‘Just a small part of the biggerpicture’, Diana Fo x - F l y n ,whose son Aidan is a SenseScotland artist, explained:“I’m not sure that what Idid was art but I like to thinkof it as my Tracey Eminmoment…it is a statement.My aim with this work is toshow that even with the bestwill in the world and massiveefforts to overcomedisabilities, the attitude ofothers will stymie and defeats u c c e s s . ”Grace Newman, whoseinstallation of mannequinparts at the end of red andwhite sticks, was one of manyworks which referred tohands and touch, talkedabout how she developed theidea:“I was intrigued by thesubject of deafblindness. Ididn’t know anything about itand I wanted to find outmore. I develop my sculpturesby playing about withmaterials and most of mymaterials are medical orclinical in some way. I wantedto give a positive image ofdeafblindness and I imagineda group of people happilychatting away. ”2 4 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Helen Ke ller Award“It’s a true story. It’s a film about my father. It took about threeyears to initially make because my father was deaf and then hewent blind. Making this film brought us closer together. ”Sense Scotland artist LewisScott presented, through oneof his support workersH e a t h e r, a short film aboutthe sculpture workshop inSweden where he created hisentry the ‘Wee Man’:“It was the positiveattitudes and commitment ofall involved that made this afantastic and enjoyableexperience. Lewis had a greattime in Sweden. His ability towork with a variety of medianever ceases to amaze and hisartistic talents have yet againshone through.”Gavin Wilson, anothersense Scotland artist, hadtravelled from the east coastof Scotland with supportworker Ruth Hay, whodiscussed how she workedwith him to produce his piece‘ Touching hands’:“Gavin gets a lot out of thearts sessions. It’s goodcommunication, he’s theboss, he’s calling the shots.The more sessions we do themore he’s in charge, the morehe tells me what to do. Mostof all we’re developingcommunication between usand I think that’s a really bigthing about the Helen Ke l l e ra w a r d . ”It was only when MatthewHumphreys was announcedas the winner that manypeople realised what ajourney this had been for theWelsh artist. Not only had hetravelled from Newport inWales to Glasgow for theceremony but his short filmGrace Newman “TheConversation”‘The Lost Reels’, also depictedthe particular journey that hisfather is still going through:“It’s a true story. It’s a filmabout my father. It tookabout three years to initiallymake because my father wasdeaf and then he went blind.Making this film brought uscloser together. ”On winning and beingpresented with the awardtrophy by Mary, DowagerCountess of Strathmore LLDDL, patron of Sense Scotland,Matthew was clearly movedby the experience: “It’s ashame my father can’t behere but I know he will lovethis. I can’t wait to show thisto my father. ”Work is already underwayto prepare for the next HelenKeller International Award.The 7th award will belaunched at the end of theyear and it is planned to holdthe next exhibition of entriesin the Collins Gallery inJanuary 2007.For more information or acopy of the catalogue,contact Lindsay Mitchellarts manager:Tel: 0141 429 0294email: arts@sensescotland.org.ukWinner of 6th Helen Keller International Award:The Lost Reels by Matthew Humphreys, Wa l e sTwo runners up(receiving a certificate and cheque for £200)Jigsaw of the Mind by Alex Cameron, Scotland andLimited Perception by Gill Horn, EnglandThree highly commended (receiving a certificate)Just a small part of the bigger picture by DianaFox-Flynn, Scotland,Touching Stillness by Orly Orbach, England andTouching Hands, Gavin Wilson, ScotlandThree commended entries (receiving a certificate)My Hand by Safiya F, India,The Conversation by Grace Newman, England andWee Man by Lewis Scott, ScotlandJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 2 5

NETWORKSAcquired Deafblindness Networkc/o Ges RoulstoneSense East72, Church Street, Market DeepingPeterborough, Linconshire, PE68ALTel: +01778-344-921Fax: +01778-380-078Email: ges.roulstone@sense.org.ukCHARGE NetworkC/o David BrownCalifornia Deafblind Services5016 Mission StreetSan FranciscoCA94112, USATel: +1-415-239-8089Fax: +1-415-239-0106Email: davidbrown1234@hotmail.comdmbrown1@pacbell.netCommunication Networkc/o Jacques SouriauCRESAMLa Rivardiere52 rue de la Longerolle86440 MIGNE-AUXANCESFRANCETel: +33 - 5 - 49 43 80 50Fax: +33 - 5 - 49 43 80 51Email: Jacques.souriau@cresam.orgcentre.res@cresam.orgCongenital Deafblindness in AdultsNetworkc/o Dominique Spriet30 Rue BarbesF-93600 Aulnay/BoisFranceTel: +33 - 1 - 48 69 68 64Fax: +33 - 1 - 48 69 68 64Email: spriet.dominique@wanadoo.frEDbNC/o Ricard LopezAPSOCECAT & APASCIDEC/ Almeria, 31 ATICESP-08014, Barcelona, SpainTel: +34-678-712-619Fax: +34-678-782-600Email: talking3@teleline.esEuropean Usher Syndrome NETWORK(EUSN)C/o Carol Brill500 Ballinteer Road, DundrumDublin 16, IRELANDTel:+353-1295-1387Email: doranbri@indigo.ieUsher Syndrome Study Group (USSG)c/o Mary GuestSense11 - 13 Clifton TerraceFinsbury ParkLondon N4 3SRUKTel: +44 - 20 - 7272 7774Fax: +44 - 20 - 7272 6012Email: Mary.Guest@sense.org.ukMultiply Disabled Visually ImpairedEuropean Networkc/o Kent LundkvistEkeskolan Resource CentreBox 9024, S-70009, OrebroSwedenTel: +46 - 19 - 6762 151Fax: +46 - 19 - 6762 210Email: kent.lundkvist@sit.seNordic Culture NetworkC/o Lone PoggioniVia G. Deledda, 1906074 Ellera (PG)ItalyTelefax: 0039 075 5179 413Email: esbjerg@aliceposta.itTactile Communication Working GroupC/o Bernadette van den Tillart15175 Prairie RoadSouth SolonOH 43153USATelefax: +1-740-426-6728Email: bernadettevandentillaart@tiscalimail.nlSiblings NetworkSabine KerstenBaal 73B-3980 TessenderloBelgiumPhone/fax: +32 13 67 67 50Email: siblingsnetwork@gmx.netNe twork N ewsA Review of DbI NetworksNetworkCommitteeAt the DbICouncil meeting in February 2004the decision was taken to create aNetwork Committee to supporttheir work and development.Networks are an important part ofDeafblind International andnetworking activity, both formaland informal, is encouraged.It was agreed that I should be theChair with Mary Guest and SergeiSorokin as my co-workers. The firstjob the Committee has been askedto do is to review networkprocedures and ways of supportingnetworks and report back to theManagement Committee and theCouncil. As a result, we decided tocarry out a survey to find out howthe formal networks were doing.The answers showed somevariations in activity, but the mainimpression is that the networks areactive and functioning well.Our findingsThe networks consist of personsfrom different countries (at least 3)who share a common interest inone specific area connected todeafblindness. They all reportedthat their aims and goals were toraise awareness on deafblindnessand to develop more knowledge ontheir chosen area.The networks have chosendifferent ways of reaching theirgoals. They reported on severaldifferent activities from arrangingconferences to distributingnewsletters and running web sites.When asked about anydifficulties, the answers can besummarized in these words: “timeAnny Koppen reports the summary findings of asurvey of the DbI Networksand money”. The networks consistof persons who do this work inaddition to a professionaloccupation. Many of them feel thatthey cannot find the time to do allthe work they intended to, orwanted to.It is also a general problemfunding the activity. Most of thenetworks solve some of thefinancial problems by meeting atconferences or working togethermainly electronically. Nevertheless,the answers reveal that some of thenetworks feel their activities arerestricted by lack of funding. Theyhave plans and intentions thatcannot be realized because thefunding isn’t there.Generally it seems to be easier tokeep going if the network hasconnections to an institution or anorganization. The network is alsoless vulnerable if it has more thanone person with administrativer e s p o n s i b i l i t y. In case of illness orchange of work, there is always oneto take over.You will find a list of the networksand contact persons on the backcover of this magazine. In additionto the ones mentioned, we alsohave a “sleeping” network, theemployment network. I havecontact with a couple of peoplewho want to continue thisnetwork. We are hoping that somedecisions can be made about thenetwork at the EuropeanConference in Slovakia.If you are interested in becomingactively involved in this Network orleading it you can contact me, theaddress below.Anny.koppen@statped.no2 6 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

N etwork N e wsE d b NUrsula Heinemann reports:Many activities are goingon in our network. Yo ucan read in an articlefrom Lucy Drescher in theCampaigns section about one ofour activities – The survey about thesituation of deafblind people inEurope. We are also working to geta Hearing in the EuropeanParliament, where we want topresent the results of this surveyand do some awareness raising.Furthermore we are alsocontributing to the work of EDF(the European Disability Fo r u m ) ,where our chairman, Wo l f g a n gAngermann is representing us.We feel we are on our way to tryto get more recognition andsupport for deafblind people andwe want to invite DbI memberswithin Europe to join us! Let’s takethis path together!Ursula HeinemannThe Nordic Cultural NetworkLone Poggioni reports:Ihereby have the pleasure toinform you about activities ofThe Nordic Cultural Network.In the summer and autumn of2004 the Nordic Cultural Networkoffered 4 courses. Across theregion, in total, 27 congenitallydeafblind adults and 60companions had the opportunity towork with, and develop, creativetalents to experience and expressthemselves in order tocommunicate with the outsideworld in a new and different way.All courses were a great successwith very good evaluations fromthe participants.Concentrating hard!Music with sign languageIn 2005 we have decided to offerthree courses as follows:•“Bronzing course” on the islandof Gotland, Sweden from15 – 22 August.•“Nature sculpture” in Sömådalen,Norway from02 – 08 September.•“Communication in music” inSlettestrand, Denmark from20 – 26 September.This last course puts together thetwo courses last year “Music ascommunication” and ”Dance andd r a m a ” .More information about thecourses is available fromElse Gro SegerbladE-mail: else.segerblad@c2i.netJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 2 7

N etwork Ne wsThe Siblings NetworkSabine Kirsten reports:After moving house fromHungary to Belgium, thingsare finally back on track. Justto make sure you have the correctmail address: I can be reached byemail at siblingsnetwork@gmx.netWith the DbI European conferencecoming up, I can tell you all thatseveral of our members will join theconference and we will also present2 workshops.A last message to allprofessionals: during thisconference you have a chance tolearn about issues and concernsthat siblings may have! Take thischance and talk to us!See you in Slovakia!Sabine Kerstensiblingsnetwork@gmx.netE U S NCarol Brill reports:There has been no networkingactivity recently but we areplanning to get thingsmoving again very soon. Pe t e rPalmer will be retiring from theChairmanship and I will becomeActing Chair, subject to committeeapproval.The future of the EUSN will bethen be discussed at length withthe membership and new plansm a d e .In the mean time we are ready towelcome new members to theNetwork. If you are interested inthe area of Usher and would like tojoin us, or be kept in touch with ouractivities, please contact me at theaddress below.doranbri@indigo.ie.Tactile Communication Working GroupBernadette van den Tillaart reports:The core members of thegroup are continuing to keepin touch! We are developing apresentation for the conference inSlovakia and, if you are coming, welook forward to meeting you there.We would really like to organise anopportunity to come together butwe would need to seek funds andsupport in order to do this. As aresult, most of our contact is byemail now.Bernadettevandentillaart@tiscalimail.nl2 8 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

N etwork N e wsCHARGE NetworkDavid Brown reportsIn the past nine months I havebeen lucky enough to attendCHARGE conferences in bothFrance and Germany, both of whichwere attended by significantnumbers of families and wereinspiring and enjoyable. The mainfocus of attention at the moment isupon two forthcomingconferences. The 7th InternationalCHARGE Syndrome Conference willtake place in Miami, Florida on July22nd-24th and will certainly beabuzz with talk about last year’sdiscovery of a gene mutation thatcauses CHARGE (see article on Pa g e???) and what this might mean forall of us, family members,professionals, and people withCHARGE. Then in August the DbIEuropean Conference in Slovakiawill feature a CHARGE NetworkD a y. Unfortunately I will not bepresent at the EuropeanConference due to thegeographical distance between meand Slovakia and the time andexpense involved in getting there,but Joff McGill at Sense in Londonhas volunteered to organise the dayin my absence, and he can becontacted at Joff.McGill@sense.org.uk if anyone requiresfurther information or wishes tooffer their services either as apresenter or as a general helper.I will be thinking about themeeting in Slovakia and sendingmy best wishes to all thep a r t i c i p a n t s .David BrownCalifornia Deaf-Blind ServicesUsher Syndrome Study GroupMary Guest reportsEleventh Meeting of theUsher Study Group7th-9th August 2995,Presov, Slovakia.The Usher Study Group lastmet in Mississauga, Canada in2003 when it was decided todrop reference to ‘European’ in thetitle as it was felt that Ushersyndrome is a condition whichaffects families worldwide.Although we are meeting inSlovakia which is in central Europethis does not exclude any of youfrom further afield joining us inPresov from August 7th- 9th.Our theme is, ‘Changing horizonsfor people with Usher in the 21stCentury’, when we shall be lookingin particular at advances in geneticsand how these might affect thelives of families with Usher in thenext decade. The keynote speakerfrom the Netherlands is Dr. R o n a l dPennings from the department ofO t o r h i n o l a r y g o l o g y, University ofNijmegen. He will talk on recentdevelopments in clinical andgenetic studies and what this couldmean for families in the future. Thetalks will be accessible to peoplefrom a non-medical background.During our two days together weshall also be looking at lifestyle,communication in families withcochlear implants both signing andoral, developments in Usher workin Warsaw and the communicationneeds of people going into researchp r o g r a m m e s .We hope that the Usher StudyGroup in Presov will attractteachers of the deaf and other keyprofessionals from Slovakia to joinus as we have been informed thatawareness of Usher syndrome isstill very limited.If you would like to attend pleasecontact Mary Guest without delay:Mary GuestUsher Study GroupSense 11-13 Clifton TerraceFinsbury ParkLondon N4 3SRTel: 00 44 (0)207 561 3372direct line;tel/text 00 44 (0)207 272 7774Fax: 00 44 (0)207 272 3862E-mail: mary.guest@sense.org.ukJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 2 9

N etwork Ne wsAcquired Deafblind NetworkIn early March the co-ordinatinggroup of ADBN met in Po i t i e r s ,France to hold their firstmeeting since last years successfulEuropean conference on AcquiredDeafblindness in Harrogate, UK.The meeting focussed on feedbackfrom conference participants andan evaluation of the event.Feedback has been universallypositive, with a number ofparticipants describing it as thebest conference they had everattended. In all, 147 people from atotal of 17 countries attended forall or part of the event.Attention now turns to the nextEuropean Conference, which willbe held in the Netherlands in 2006,hopefully sometime in the autumn,e i t h e rSeptember orlate October.Please make anote inf o r w a r dplanners and diaries!Ges RoulstoneChair, ADBNCommunication Network reportJacques Souriau reportsAt the moment, the membersof the communicationnetwork are working onvarious projects:•very short term: DBI conferencein Slovakia•medium term: a conference onMeaning Making and LanguageDevelopment in Oslo (April 26th-29th 2006 – run by NUD)•long term: a European MastersDegree in CongenitalDeafblindness andC o m m u n i c a t i o n .Several meetings took placeduring the last months:January 2005: Anne Nafstad,Inger Rodbroe and Flemming Arsk-Larsen met in NUD to write up afirst draft proposal for a EuropeanMasters Degree in CongenitalDeafblindness and Communication.February 2005: M a r l e n eDaelman, Marleen Janssen andJacques Souriau met in Brugge(Spermalie) to work on thisprogramme and investigate whichUniversities could eventually join insuch a project. They also discussedpossible sources of funding for thepreparatory phases. JacquesSouriau is taking part in a EuropeanProgram called EQUAL that couldbe used for such a project.April 2005: Inger Rodbroe,Flemming Arsk- Larsen and JacquesSouriau met in NUD. They workedon the program for the OsloConference and theCommunication Networkcontribution during the DbIConference in Slovakia.May 2005: Inger Rodbroe,Flemming Arsk-Larsen, MarleneDaelman, Marleen Janssen and To nVisser met in NUD to work atfinalising the Conference stream inSlovakia and the Oslo Conference.They will also discuss the EuropeanMasters project.The Communication Network isworking on two important topics:developing a better knowledge andexpertise on meaning-making. Itseems that now, the question ofhow to create the conditions forcongenitally Deafblind people totake an active part in dynamic andsustained communicative activitiesis somehow answered. What has tobe developed is how utterances canbe understood at the right level ofcomplexity and how to support thepotential of linguality emergingfrom these utterances. This meansboth relating them to a gesturalgrammar grounded in the contextand using them as a opportunityfor the acquisition of linguisticc o m p e t e n c i e s .From a more practical point ofv i e w, it is important to spread,support, develop and strengthenpractical expertise and relevanttheoretical backgrounds related tocommunication in the field ofcongenital deafblindness.Opportunities like the DbI EuropeanConference in Slovakia and theN U D-Oslo Conference will shareknowledge with colleagues. Theidea of a European Masters degreewould also contribute toestablishing a long-standingcontext for staff development at aEuropean level. CongenitalDeafblindness is such a lowincidence field and it is also sovulnerable that it requiresinternational collaboration. Thatcould be achieved at least in Europe.For the Communication NetworkJacques Souriaujacques.souriau@cresam.org3 0 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

CHARGE Artic le Conf head er enc hereeGerman CHARGE ConferenceKöln Bergisch-Gladbach, 5 – 7 May 2005Since about 1990 thoseof us working in homebased early educationor in schools for deafblindchildren in Germany met anew subgroup of clients.They were children withCHARGE. The cause wasunknown, but since Autumn2004, we have understoodmore about it because thegenetics are much clearernow thanks to Conny vanRaavenswaij and hercolleagues from theUniversity from Nijmegen.When we first started tomeet CHARGE children therewas little knowledge availableabout the condition, so I wasvery glad to meet a person, atthe DBI Conference inArgentina, in 1995, whotalked about the changes inthe deafblind population ofchildren: it was David Brown.At that time he was workingwith Sense in London, and hemade the participants awareof the specific special needsof children with CHARGE.David suggested a lot ofliterature and this helpedGerman professionals todevelop support for childrenwith CHARGE and theirparents – especially within thedeafblind field.CAUSE projectIn 2000 an EU project“ C AUSE” started,concentrating on rareconditions like CHARGE andU s h e r. It ended up 2003 by abig conference forprofessionals and families inthe UK. My colleague GudrunL e m k e -We r n e r, now Directorof the biggest German schoolfor deafblind children inHannover came with us andwe decided to have our ownCHARGE Conference inGermany as quickly aspossible! Our colleagues fromother institutions fordeafblind people supportedus. They felt like us thatparents with children withCHARGE mostly live far awayfrom each other. Theirchildren attend different,non-specific schools, and thismeant there was a huge needfor parents and professionalsto meet for an intenseexchange.Jacques Souriau in Fr a n c ewas quicker than us and theFrench CHARGE Conferencetook place in September2004, in Poitiers. We hopedthat David Brown wouldcome from the other side ofthe world to join us aswithout him we would havefelt somewhat incomplete.Koln Conference60 people attendeda l t o g e t h e r, with 20 familymembers with 8 children withCHARGE. They attended alittle extra kindergarten, with3 nice young and experiencedpeople to look after them.The parents could follow the“Parents,teachers andprofessionalsDavid Brown suggested a lotof literature and this helpedGerman professionals to developsupport for children withCHARGE and their parents ”JA N U A R Y – JU N E 2 0 0 5 • DbI Review • 3 1

CHARGE Conf er enc eGettingtogetherlectures of the conference.David Brown gave as aninsight into the “basics” ofCHARGE. He described hisway of looking at thebehaviours of the children.Behaviours that seemedstrange and bizarre to usbefore became quitereasonable! And we verymuch appreciated his way ofthinking and interpretingchildren’s actions with us.Many parents expressed theirrelief about this way oflooking at their children’sbehaviour and seeing howreasonable it was! He showedus many examples of theincreasing capabilities of achild, when he / she isallowed to use his / her ownstrategies to find a stability orwhen we give the rightsupport, by satisfying basicneeds, which we could notanticipate before.We all followed with greatinterest the presentation ofthe scientific adventure ofdiscovering the mutation of agene: “Genetic causes ofCHARGE-Syndrome andconsequences” from Connyvan Ravenswaaij andMarjolijn Jongmans. Therewere intensive discussionsabout the results of thisd i s c o v e r y. Points of specialinterest were of course thegenetic risk of CHARGE,which is fortunately very low(1-2%), the role of age andgender in getting a CHARGEcondition, and the possibilityof testing for the geneticcondition of children withCHARGE in Nijmegen.We also enjoyedpresentations by EugenB r e h m e r, who described hiswork with a child anddemonstrated the progresshe made in riding andjogging. Mr. Brehmer showedthe positive “all over” effectsof both therapies. We alsowelcomed Juliane We l t n e r-Oepen, a teacher of rhythmicsand also a music-therapist.D r. Helmut Kruke, who hasa long history of workingwith children with CHARGEfor a long time answered thevery specific questions ofparents. ON SaturdayHeidemarie Adam from theUniversity of Leipzig lecturedabout “A u g m e n t a t i v ecommunication”. Thisemphasised all differentpossibilities to give the bestaccess to communication andincluded video material and ashort practical demonstrationof developing PECS (“pictureexchange system).The last part of theconference was open toquestions and exchange withthe speakers. Parents wereinterested in experiences ofCochlear implantation. Mrs.Skusa, a special teacher fromH a n n o v e r, gave a shortinsight, stressing the fact thatmost children had enjoyed aremarkable improvement inrespect of their hearingcapacities and their auditiveorientation, but this did notmean that all these childrenwere able to develop spokenl a n g u a g e .At the end of this exchange,parents, professionals, thosewho had lectured and wewho had organised theconference all we felt howsuccessful it had been and weare looking forward to ournext meeting.Hanne Pittroff, VizeDirector of the School ofBlindeninstitutsstiftungWürzburgContacts:g.lemke-werner@taubblindenwerk.dehanne.pittroff@Blindeninstitut.de3 2 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Foc us on Latin AmericaDeveloping the identity of thered and white stick in PeruMaría Graciela Laynes who works for the Helen Keller Association in Peru writes:The teaching ofOrientation andMobility to people whoare deafblind is one of thechallenges in therehabilitation curriculum.Many of these people do notagree that they should use astick to help them get aroundbetter and becomeindependent in the street.They feel they are not “blind”and so do not have to useone, and sometimes itdepresses them just to thinkthat they will have to use itfor their whole lives.A year ago when we foundwe had more young adultswho were deafblind at theHelen Keller Association inPeru, we talked to a group ofthem so we could come to anagreement about teachingthem about it. We had toshow them why it wasimportant to use a stick andhow it could be differentiatedfrom the white one that blindpeople use.We told them an experiencewe had had in England,where people withdeafblindness use a red andwhite stick. The importantthing is that people recognisethem in the street and canidentify them and offer themhelp whenever they need it.This also helps to keep themsafe in situations such asgetting on or off a bus,crossing the road, going up ina lift, in a shopping centre, orwherever they go.We feel this was importantto them, knowing these areimportant accessories, not tosegregate or stigmatise them,but to give them the chanceto have fewer problems intheir daily lives as part of thenormal society to which theywant to belong.Many of them still have alot of useful vision and asthey do not use a stick, theyare ignored when they needhelp to cross the road or geton or off a bus.We currently have red andwhite sticks that wereacquired for our project withSense Internacional(Latinoamérica). We areorganising a massdissemination campaign withsupport from the Congress ofthe Republic DisabilityCommission, so that thesecanes can be recognised byeveryone in the country andby public and privateorganisations.We are confident that theyoung adults who aredeafblind in Peru will be thebest advocates of using thered and white sticke v e r y w h e r e !Website: helenkellerperu@hotmail.comUsing thecane!JA N U A R Y – JU N E 2 0 0 5 • DbI Review • 3 3

Article Focus on head Lat in here Ame ricaGreat news about training!Graciela Ferioli writesBeatriz Zoppion graduationday!In January 2005 a newgroup of students began aMaster’s degree course inCordoba, Argentina. Thetwenty-four students areprofessionals, working inschools for multihandicappedchildren andyouth. Twenty-two areArgentinian, one Uruguayanand one Cuban. So, this newtraining cohort will represent,for those countries, asignificant improvement inservices. The 22 Argentinianstudents are from all over thecountry from the Northwestto Patagonia and BuenosAires. This course consists offour training periods of twoweeks in January and July.Then the students arequalified to write a thesis. It isorganized and undertaken bythe Metropolitan University ofEducational Sciences ofSantiago, Chile and theInstitute Cabred of Cordoba,Argentina.This main trainingrepresents an importantadvance for schools which aretrying to enrol moredeafblind and multihandicapped children andy o u t h s .Recent graduatesAlso, Shirley Maia from SãoPaulo, Brazil and BeatrizZoppi from Argentina haverecently graduated. Shirleygot her Masters degree atUniversidad Mackenzie in SãoPaulo, Brazil and Beatriz atBirmingham University in theU K .In February 2005 AliciaPicasso a consultant forHilton Perkins Program held aconsultation with the Pa r e n t sAssociations at Fu n d a c i ó nMulti Impedido in Medellin,Colombia. Thirty parents fromacross Colombia andneighbouring countries likeE c u a d o r, Bolivia and Pe r ucame along. The outcome ofthis consultation is to fosterthe parents associations inthe countries of AndeanR e g i o n .In April Escola Anne Sullivanand Associación paraDeficientes da Audio-V i s a oheld the first Latin AmericaConference on deafblindnessin São Caetano do Sul, SP,Brazil. Various professionalsfrom Latin America mettogether to discuss manythemes about deafblindeducation, including how weall work together.This conference representeda significant occasion to meeteach other and exchangeideas about the future.Please go to the web pagefor more informationwww.adefav.org.br.3 4 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Foc us Artic on Latin le head America hereUnited – Combating Exclusionfrom SocietyCarolina Benjumea reportsThe ThirdInternationalSeminar onDeafblindnessThe Third InternationalSeminar on Deafblindnesswas held last September atthe Catarina SpecialEducation Foundation in thecity of Florianópolis, thecapital of Brazil’s SantaCatarina State, and wasattended by professionals,parents and deafblind peoplefrom Peru, Brazil, Bolivia andColombia. The main theme ofthe seminar was inclusion ofDeafblind people in LatinAmerican society.A number of well-knownpersonalities, with wideexperience in the field ofpromoting the rights of thedisabled, were speakers at theevent. Similarly, it was asuitable occasion for joiningforces and setting targets forgetting deafblindnessrecognised as a uniquecondition and a first step indefending the rights ofdeafblind people.The event also allowedsuccessful experiences to beshared by professionals fromBrazil, Peru, Bolivia andColombia. Deafblind peoplewere panelists discussing theDeafblind Associations in thecountries represented. Thisemphasised, yet again, that itis possible for deafblindpeople to be included inactivities if they have asuitable guide and interpreterwho can act as acommunication bridge.F i n a l l y, participants haddeveloped an interest in thesubject, and, by taking part inthe seminar, committedthemselves to contributingtheir own individual grain ofsand towards always fightingthe exclusion of deafblindpeople from joining inwherever they are in LatinAmerica..Carolina BenjumeaAdministration andResources OfficerSense Internacional(Latinoamérica)cbenjumea@senseintla.orgJA N U A R Y – JU N E 2 0 0 5 • DbI Review • 3 5

Article Focus on head Lat in here Ame ricaInternational Forum and NationalMeetings in Brazil, November 2004The First International Fo r u mon Multiple Disabilities andDeafblindness together withthe Third National Meeting ofFamilies and SpecializedProfessionals and the Fifth NationalMeeting of Deafblind People weresuccessfully held in São Pa u l oBrazil, November 18-20, 2004. TheForum and Meetings were held atthe facility of APAE (The Associationof Parents and Friends of theHandicapped in São Pa u l o ).This three day event wasorganized by Ahimsa (School forChildren with Deafblindness in SãoPaulo), ABRASC (BrazilianAssociation of Deafblind Pe o p l e )and ABRAPASCEM (BrazilianAssociation of Parents and Fr i e n d sof the Deafblind and Multi-Handicapped). These organisations,together with other facilities inBrazil, comprise Grupo Brasil(Grupo Brasil de Apoio aoSurdocego e ao Múltiplo DeficienteSensorial or Group Brazil forSupport to the Deafblind and theMulti-sensory Impaired).These successful seminars weresupported by the BrazilianSecretary of Special Education/Ministry of Education, the NationalCoordination Centre for theIntegration of Persons withDisabilities, Sense International,A PAE and the CanadianInternational Development Agency( C I D A ) .The general theme of theInternational Forum was “HandsHeld: Education and Health for allthe People”. Speakers were inattendance from Brazil, Canada,Colombia and Portugal. Pa r t i c i p a n t swere there from throughout Brazil,a country not unlike Canada in itssize. Participation included personswith deafblindness, familymembers, professionals from thefield of deafblindness, physiciansand representatives fromGovernment. What was particularlyinteresting for me was to hearpresentations from variousphysicians who were workingcollaboratively with staff from thedeafblindness field in Brazil.I had the opportunity toparticipate in this excellentInternational Forum in São Pa u l oand participate in subsequentseminars in Campo Grande and Riode Janeiro as the second part of asuccessful Canada-Brazil ExchangeProgram. This Exchange wasorganized by Shirley RodriguesMaia (Executive Director of GrupoBrasil) and sponsored by CIDA. Thepurpose of this exchange was tofacilitate the exchange ofinformation to professionals andfamily members in Brazil aboutCongenital Rubella Syndrome, latemanifestations of CRS and theCanadian concept of Intervention.The first part of the Brazil-CanadaExchange involved a group ofprofessionals from Grupo Brasiltravelling to Canada (during June2004) to learn about Canada’sIntervenor Program and to observehow persons with CongenitalRubella Syndrome receive servicesin Canada.My visit to Brazil as part of thisExchange involved lecturing aboutthe Canadian Study on LateManifestations of CongenitalRubella Syndrome and DeafblindService Programs in Canada.I want to take the opportunity inthis article to compliment and bringnotice to Grupo Brasil and the hardwork of Executive Director ShirleyRodrigues Maia and her associatesfor the wonderful work beingaccomplished in Brazil on behalf ofpersons with deafblindness. Theexceptional International Fo r u mthat I had the opportunity toattend is one example of the underreportedachievements of GrupoBrasil and their well-trained andhard working staff and volunteers.Stan MunroeAdministration CoordinatorCanadian Deafblind and RubellaAssociation3 6 • DbI Review • JA N U A R Y – JU N E 2 0 0 5

Foc us on Latin AmericaVenezuela – more developmentswith SOCIEVENMaria Luz TroconisSocieven is a non-profitmaking civilassociation, formed in1995 to promote actions tobenefit the deafblind inVenezuela and their families.The need emerged to help thedeafblind population.At the same time, thepopulation with multipledisabilities who benefit fromthe strategies and programsthat are used in the educationof the deafblind persons, areincluded.It has the support of theInternational Hilton Pe r k i n sProgram of the PerkinsSchool for the Blind PIHP(USA) and the Chacao MajorGovernment until 1993.The Christoffel BlindemissionCBM (Germany) and DividendVoluntary of the CommunityDVC (Venezuela) support ust o o .After 10 years of existence,work and achievements, “THENEW SOCIEVEN” is emerging,to continue defending therights of the population intoday’s Ve n e z u e l a .VisionThe deafblind andmultidisabled people, theirfamilies, professionals andinstitutions who work withthem join SOCIEVEN insupporting them. To g e t h e r,we unite to improve theirquality of life, improvecommunication and developindependence. We strive forrecognition of deafblindnessand multiple disability, thevalue of the family andequality of opportunity inschool and employment.We support training forprofessionals. We do this withsupport from public andprivate organizations.BeneficiariesOur resources are directed at:•Children, youngsters andadults deafblind (congenitalor acquired and/or withmulti-impediments) in thewhole country.•Families (parents, mothers,brothers and others) ofthese persons.•Professionals of differentspecializations from thecountry and out of thec o u n t r y•National Institutions andpublic, private orinternational organizationsthat have a connection withdeafblindness and multidi s a b i l i t y.Present projectsSOCIEVEN develops andsearches for alliances andpartnerships in the followingp r o g r a m s :•A space for deafblindpeople, parents andprofessionals: S O C I E V E N ’ Sheadquarters, adapted tothe necessities of thepopulation brings togetherhuman groups that areMaria LuzTroconisPedroGregoryJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 3 7

Focus on Lat in Ame ricaPedro, Pao and TaniaStaff trainingJanice Alcantara, FundraisingDirector with the childrendedicated to the cause tounite efforts. Fu r t h e r m o r e ,in that space, programs aredeveloped that benefit thep o p u l a t i o n .•Inter-Institutionalrelations: Work inharmonious manner withthe Department ofEducation, Culture andSports, Department ofSocial Development andothers as to benefit thepopulation of the deafblindand those with multiimpedimentsin the country.•Capacity building:To be able to reach a majornumber of states in thecountry where theprofessionals will receivedadequate information towork with this populationin their institutions;strengthen them withsupport visits and conductwork consultancies withtheir students.•University project:SOCIEVEN elaborated a“Curricular Design Proposalfor the Distance Master’sDegree in Education ofMulti-impaired andDeafblind Individuals inVenezuela” to create this Vlevel of studies in auniversity in the countrywith the Hilton Pe r k i n sProgram support andothers institutions that willshow their interest.•Knowledge aboutdeafblindness and multiinpediments:W i t h“ C O M M U N I C ATION”. Weare trying to reach thedifferent levels of society sothey acknowledge theexistence of deafblindnessas a unique, specialcondition, with its owncharacter of multiimpediments.In the next 5years there will bespectacular advances forthem and their families.•Usher syndrome: We havelocated a group of youngdeaf adults, with RetinitisPigmentosa that arebecoming deafblind and wewant to approach them in aprofessional manner so asto make real changes intheir lives.Av. Jalisco, Edif. La Colonia,Piso 3. Urb. Las Mercedes,Caracas – VenezuelaTelefax (0058-212)9911037 –9911725.Email:socievenac@cantv.netProgram members3 8 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

R eg ional N e wsDeveloping services in RomaniaRomaniaAndrea Hathazi, Special Education teacher in Romania, discusses the developmentstaking place.When talking aboutdeafblindness andthe servicesprovided for people withdeafblindness, Romania hasmade huge steps in a shortperiod of time.Because of the involvementof the Ministry of Educationand Research in Romania andthe activity of SenseInternational, Romania, anew protocol was signed forthe next 5 years. More andmore deafblind units arebeing set up in differentregions and cities. This meansthat more children have theopportunity to be identifiedand to benefit from properintervention. Afterembedding these units in theRomanian educationalsystem, a new issue hasarisen. What about thetraining of the teachers whoare working in these units?Most of them are specialeducation teachers workingalready in schools for sensoryimpaired children. Butdeafblindness is about newapproaches and differentmethods of intervention, sotraining of teachers in thisarea of skills and knowledgewas a necessary thing to do.So, an in-training course forteachers was organized intwo parts with 6 months inbetween. The trainers werespecialists from both the UKand Romania; the lattercoming from the Ministry ofEducation and Research andSpecial EducationDepartment of the “Babes-Bolyai” University, ClujNapoca. In all, 25 teacherswere trained and theyreceived a certificate thatacknowledges their acquiredcompetencies.At the moment, a newphase in teacher training isbeing developed. Another 30teachers who are alreadyworking at the units or whowill be working at the unitsfrom September, willparticipate on a new coursethat will take place this June.The important change is that,this time, the course will bedelivered by Romanianspecialists, Mircea Vlad andP r o f. Vasile Preda, incooperation with John Shaw,a UK specialist. Two specialeducation teachers, who havealready had training, andwho are working at thedeafblind unit in Cluj, AndreaHathazi and Oana Farcas, areinvolved in deliveringdifferent topics and carryingout practical activities. Amanual for the course hasbeen written and it containsall the materials that wereused in the previous courseand some more.The teachers also have theopportunity to shareexperiences and accessinformation on differenttopics at the networkmeetings and seminars thattake place twice a year.Teachers present activities,methods of approaching andintervening with thedeafblind child, followed bydiscussions. It helps them tothink about the next steps indevelopment and understandthe complexity of dualsensory impairment.AndreaHathaziPhysical Education and Deafblind Children –can you help?GreeceMy name is Fenia Karkaletsi,I am 25 years old and I amfrom Greece. I am from thepost-graduate Department ofPhysical Education and SportScience in Athens and mymajor is on Adapted PhysicalEducation. I’m working nowon a project about deaf- b l i n dchildren and I would be verypleased if you could help meby sending me a bibliographyabout physical education ford e a f-blind children.Thank you in advanceFenia Karkaletsifeniakarkaletsi@yahoo.grJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 3 9

R egional N ew sCanadaCDBRA Elects New PresidentPatrickPetersonPatrick Peterson was electedPresident of the CanadianDeafblind and RubellaAssociation at its AnnualGeneral Meeting in NewWe s t m i n s t e r, British Columbia,September 2004. Pa t r i c kreplaced Linda Mamer whowas DbI 2003 ConferenceChair and President of CDBRAsince 1995.Patrick has been involved asa volunteer with CDBRA since1991. He was President of theNew Brunswick Chapter andVice President of the NationalBoard of Directors from 1993through 2004. Patrick wasChair of the 5th CanadianConference on Deafblindness(1993) and a member of theManagement Committee ofthe 13th DbI Wo r l dConference held inMississauga, Canada 2003.He is a retired Senior PublicServant, having worked in anexecutive function with theProvince of New Brunswick’sSystem of Provincial Pa r k s ,Historic Resources &A r c h a e o l o g y. Outside hisvolunteer career, Patrick iscurrently working as a ProjectManagement Consultant. Healso is the Project Coordinatorfor the establishment ofCurtis Complex, a tenapartmentfacility to housedeafblind adults inFredericton, New Brunswick.AustraliaEvents and policy change affectingAustralians who are deafblindMike Steerreports:Australian DeafBlindCouncil (ADBC) researchproject: One of the mostimportant and exciting thingsto have happened for peoplewith deafblindness, theircarers and support agenciesin Australia for some time,reports ADBC ExecutiveOfficer John Finch, is thereceipt of a $15,000 grantfrom the CommonwealthGovernment’s Office ofDisability to undertake areview of the Mary Wa r d(1994) report Deafblindnessin Australia. Someinformation on the newproject appeared in the lastissue of DbI Review.“While in the short termservices hardly, if ever, seemto improve and ADBCmembers often feel they arehitting their heads against abrick wall”, says Finch, “If westand back, especially in someStates over a period of 20 to25 years, the improvement inservices has been dramatic.Often these improvementsresult from a report thatservice providers are able touse as a weapon to persuadeGovernment Departments toimprove services. I sincerelyhope we are going to makethe most of this latestopportunity without thinkingit will provide anything likewhat is actually needed”.The research grant resultedfrom the ADBC Committeetaking the case toGovernment and pushingvery hard to the effect thatnothing positive hadhappened as an outcome ofthe National Forum held inSydney in 2001. A reportfrom this meeting had beensent to the National AdvisoryCouncil on Disability and aftera meeting withrepresentatives of ADBC’ scommittee its membersagreed that the deafblindnesssituation in Australiawarranted furtherinvestigation. The grant wasan outcome of this decision.Since notification at the endof June 2004, ADBC hasprepared a Brief on the waythe Council plans toundertake its research. Thenational Office of Disabilityhas since approved this Brief.A Project Steering Committeehas been organized,comprising a person withdeafblindness, a parent, anorganisational representativeand a person to coordinateand act as secretary to themeeting. A Reference Groupof eight people was alsoinitiated, providing Australiawiderepresentation.A project consultant hassince been appointed andcommenced working on theproject in mid-December last.The Project Consultant isMeredith Prain, who is wellknown to many Australianswith deafblindness, theirfamilies and professionals inthe field. Terms of referencehave now been formulatedand since her appointment,Meredith has designed theproject methodology,4 0 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

R eg ional N e wsreviewed literature relevant tothe report and prepared aquestionnaire. Her next stepis to meet people. It isanticipated that her reportwill be completed in July,2 0 0 5 .Disability Support Pension(DSP): Welfare Reform.Unless the recently re-electedCommonwealth Governmentcannot be convinced of analternative, it is likely toproceed with a version of its2002 Disability Reform Bill,which would tighteneligibility for DSP by changingthe work capacity test. Atpresent, in Australia, a personis eligible for DSP if, becauseof a disability, he or shecannot work for 30 hours perweek at normal award wages.The 2002 Bill would tightenthat test to 15 hours. Itexempts existing DSPrecipients. The DSP applies topeople of working age and(except for those in thecategory DSP-Blind) is meanstested.The Government hasindicated that onemodification it mightconsider is to allow peoplewho try work and fail, to havetheir pension restored easily.Approximately 705,000Australians are in receipt ofD S P, equivalent to 5.2% ofthe working age population.The CommonwealthGovernment has recentlystated that it will consult thedisability sector beforefinalising its welfare reformplans, which includerestricting the growth of theDisability Support Pe n s i o n(DSP) population. However,there are concerns that thetimeframe (which may be asshort as a month at the timeof writing) will be too tight toallow meaningful input frompeople with disabilities. Inmid February 2005,representatives of the newlyformedDisabilityParticipation Alliance metwith the relevant Ministersand representatives fromOpposition parties. The grouppresented the politicians witha list of principles fordisability reform. These statethat welfare reform shouldfocus on developing widerangingstrategies to assistpeople into employment,rather than simply shiftingpeople from one form ofincome support to another. Akey message to the Ministerswas the value of open, publicconsultation. Through itsorganising committee, theAlliance is currently workingto develop specific policyalternatives on welfarereform. Further meetingswith the Ministers arep l a n n e d .Following a recent strategicplanning meeting of Fe d e r a lCabinet, the Governmentannounced the appointmentof Mr Noel Pearson as aconsultant to it on welfarereform. It has also nowestablished a Ministerial taskforce to develop detailedp r o p o s a l s .A Disability Pa r t i c i p a t i o nAlliance was formed inFebruary this year at ameeting in Melbourne ofnational disability and welfareorganisations (for details seew w w.afdo.org.au). It is aloose and temporary allianceof more than 20 nationaldisability and welfareorganisations. The Alliance isnot opposed to reform.Indeed, it seekscomprehensive reform thatwould dismantle the range ofbarriers that prevent ordiscourage people withdisabilities from more fullyparticipating in Australia’seconomic and social life.Day to day work of theAlliance is led by anorganising group elected atthe Melbourne meeting. TheAlliance has no Secretariat.Disability DiscriminationAct, Education Standards.After failing to pass, theDisability DiscriminationAmendment (EducationStandards) Bill wasintroduced into Parliament on17 November 2004. The Billamends the DisabilityDiscrimination Act in order toensure that the provision ofdraft Disability Standards forEducation are fully supportedby the Act by:– introducing and definingthe term ‘educationp r o v i d e r ’– providing that it is unlawfulfor ‘education providers’ todiscriminate on the groundof disability in thedevelopment oraccreditation of curricula ortraining courses– providing that educationproviders may be requiredto develop strategies andprograms to prevent theharassment andvictimisation of studentswith disabilities– extending the defence of‘unjustifiable hardship’ ineducation to postenrolmentsituations, and– clarifying that disabilitystandards made undersection 31 of the Act mayrequire reasonableadjustments to be made inorder to avoid unlawfuldiscrimination on theground of disability.AustraliaJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 4 1

R egional N ew sAustralia(continued)The new EducationStandards will covergovernment and nongovernmentproviders in allsectors: pre-school, school,vocational education andtraining, higher educationand adult and communitye d u c a t i o n .Web Site Discrimination. I na recent article in‘Computerworld’, Australiancommunity activist, BruceMaguire states that theC o m m o n w e a l t hGovernment’s trend towardsusing online PDF documentswas attracting ‘a growingnumber of DisabilityDiscrimination Actcomplaints’. Adobe’s portabledocument format (PDF)remains relatively inaccessibleto people who are blind,vision impaired or deafblind.Although software exists touse these formats, thetraining required and thefinancial freedom of the$1000 to upgrade to readdocuments is beyond mostpeople with a disability. Thisis despite a directive from anAustralian Council ofGovernment Ministers that allgovernment web sites beaccessible to people with ad i s a b i l i t y. To read the article,go tohttp://www.computerworld.com.au/index.php/id;973165449;fp;16;fpid;0Airline Policy on GuideDogs. Australian domesticcarrier Virgin Blue hasreversed its policy of notproviding mats to peoplewith guide dogs after ‘The(Melbourne) Age’ newspaperrevealed the airline refused toallow a blind woman to flybecause she did not have amat for her dog. The airlineadmitted that it put KatrinaStewart ‘through hell’ andapologised to her and herf a m i l y. The Age’ article can beread athttp://theage.com.au/articles/2004/11/16/1100574464664.html?oneclick=true.Blind Citizens Australia (BCA)has published on its web siteat http://www.bca.org.au/airlinepolicy.htm, anairline policy for Qantas,J e t s t a r, Singapore Airlines,Virgin Blue and Pacific Blue.BCA advises its members andthose who are deafblind, tocall the relevant carrier priorto purchasing a ticket onorder to clarify their policy onfares and guide dogsAccessible Telephones. T h eAustralian CommunicationsIndustry Forum (ACIF) hasrecently developed a DraftIndustry Code on AccessibilityFeature Information forTelephone Equipment. TheDraft Code enhances thecurrent regulatoryarrangements by providinginformation about keyfeatures on handsets. Thisinformation is not currentlyprovided and will enableconsumers to make moreeffective choices about theproducts that best meet theirneeds. Public comment onthe Draft Code has beeninvited. For more information,go tohttp://www.acif.org.au/current_activities/public_commentUniversities: Provision ofCourse Materials. The Fe d e r a lMagistrates Court recentlyconsidered the issue ofdisability discrimination inrelation to higher educationin its decision Hinchliffe v.University of Sydney.Hinchliffe had a ‘visiondisability’ that requiredspecial assistance in theprovision of course materials.Her argument was that theUniversity of Sydneydiscriminated against her byfailing to provide her, in atimely way, with coursematerials in the form ofnatural voice audio tapes or,a l t e r n a t i v e l y, in written formin 24 point Arial font on lightgreen paper, together withenlarged diagrams. TheUniversity of Sydney deniedthe claim.The Court ultimatelyconcluded that Hinchliffefailed to establish a case ofindirect disabilitydiscrimination. The case sets aclear precedent for otherinstitutions to follow. For acopy of the case go tohttp://www.austlii.edu.au/cgi-bin/disp.pl/au/cases/cth/FMCA/2004/85.html?query=university+and+2004Copyright and PrintDisability. The Human Rightsand Equal OpportunityCommission has compiled alist of Frequently AskedQuestions about how thecopyright legislative andadministrative regime affectsproducers and users ofaccessible-format material(audio, Braille, e-text andlarge print) in Australia. Toaccess the list, go tohttp://www.hreoc.gov.au/disability_rights/education/copyfaq.htm4 2 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

R eg ional N e wsThe Norwegian Association of the Deafblind NADBNorwayThe Norwegian Association ofthe deafblind (NADB) is theoldest organization of and fordeafblind people in theNorthern hemisphere, maybein the whole world. Since1957, we have worked for thegood of Norwegian deafblindpeople. In about two yearstime, we will look back on 50years of providinginformation, cultural andsocial activities to supportdeafblind people in thisc o u n t r y.In 2005, and in thefollowing years, we willcontinue this work. We willalso participate in the Nordic,European and internationaldeafblind work. But all theactivities in the associationmust, now as before, be donewithin our economic limits!!ArendalThe Summer gathering hasbeen, and still is, the mostimportant meeting place forthe members of NADB. In2005, the summer gatheringwill be held for the 50th time.This anniversary-gatheringwill take place in Arendal.One of the reasons for this isthat at the end of this year,the present editors of NADBare celebrating their 25-yeara n n i v e r s a r y. Thus, the boardthinks there should be anopportunity for the deafblindpeople to get together witht h e m .There is a main task forNADB and that is to offer themembers courses that lead toqualification andarrangements that give themthe opportunity to meetothers, get new informationand have a good time.M o r e o v e r, by arranginggatherings for the membersin the local clubs of NADB, wecompleted the project “Abetter everyday”. Theactivities are social andprovide an importantmeeting place, wheredeafblind people meet eacho t h e r. In this way, we helpmany deafblind people tobreak out of daily isolation.Among the new governmentactions to support deafblindpeople in 2004, we have tomention the print-out service.NADB fought for this foryears, and we finallysucceeded to get it on thegovernment budget for 2003.N o w, the Norwegian Soundand Braille library has put theservice to action and thisservice is an important steptowards equal opportunitiesregarding deafblind people’saccess to information.We have been activelyinvolved with many partnerorganisations in Europe tocampaign for equality issuesfor deafblind peopleincluding EDU, EdbU and DbI.The day the EuropeanParliament passed adeclaration which states thatdeafblindness is a uniquedisability was a great day forus. As a consequence of theEØS cooperation, thisdeclaration will also beimportant in Norwegiandeafblind work.We are also involved incampaigning for improvedservices at home and wesupport our members withtheir individual requests. Weenjoy two publications,Dovblines Ukebad andPunktnytt. Also, to increaseand improve the informationto the members about theassociation, the NADB publishits own member’s magazine.This magazine is publishedtwice a year, and we know itis well received.Fo r t u n a t e l y, a number ofgovernment departmentsunderstand our needs andsupport us financially and wethank them for it!Geir JensenThe School and the Super Bowl!USAThis year, the Florida Schoolfor the Deaf and the Blind iscelebrating 120 years ofsuccessfully developingchildren's potential. With acurrent enrollment of 750students from kindergartenthrough 12th grade, theschool provides outreachservices to an additional 116infants and pre-schoolchildren throughout Floridawith sensory impairments.The Education services areprovided free to eligiblechildren in the state ofFlorida, USA. It’s a schoolwith an extensive campus andan enviable record for pupils’achievement: in theclassroom, on the sports fieldand in the community!To celebrate this wonderfulanniversary the school wasrecognised at one of the mostprestigious sporting eventsheld in the USA – the SuperBowl. Grammy Award winnerAlicia Keys sang “America theBeautiful” to honour theschool and its achievements!JA N UA R Y – JU N E 2 0 0 5 • DbI Review • 4 3

C a m p a i g n sWorld Bank Meeting onDisability in Washington, USAMike Collins, our Past President and Larry Campbell, President of ICEVI were theretogether and want to share their joint impressions with DbI and ICEVI.General ImpressionsThe World Bank is definitelytaking the issue of includingpersons with disability intodevelopment programss e r i o u s l y. Judy Heumann andher “disability team” haveclearly had a positive impacton staff of the Bank. In hiskeynote address World BankPresident James Wo l f e n s o h napologized for their lateentrance in addressing thisissue but it was clear from hisapproach that this is not“window dressing” and theBank is taking it seriously. Mr.Wolfensohn seems keenlyaware that with an estimated600 million persons withdisabilities that it will bevirtually impossible to reachthe Millennium Develop Goalof “poverty alleviation” unlessthe Bank more effectivelyaddresses the needs ofpersons with disabilitieswithin ongoing developmentinitiatives. It is interesting tonote that Wolfensohn had aconnection with the disabilitycommunity long beforeassuming his post at theWorld Bank and he iscomfortable and conversantwith the issues andchallenges. He is also awonderful speaker.Session on InclusiveEducation:There has been a noticeablemoderation in the viewpointof many on inclusiveeducation. The President of“Inclusion International”,Diane Richtler, articulatedwhat we felt was a verysensitive and sensible positionthat made particular note ofthe special and unique needsthat deaf and blind learnershave that may requirealternative program modelsand more assistance fromtrained specialist teachers.She also specificallyreferenced deafblind studentsamong those sensoryimpaired people who havesuch special needs. We feltthis was a very encouragingsign that people are lookingbeyond philosophy to therealities of implementationand doing so in a morethoughtful way. We think theposition papers that ICEVIand WBU have developedalong with the work thatWBU and IFD have brought tothe table at IDA meetings isbeing heard and appreciated.ImplementationAll panelists seem to expressthe feeling that the mostsignificant challenges we nowMike CollinsLarry Campbell4 4 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

Artic le C head a m p a here i g n sface with inclusive educationrelate much more to goodimplementation rather thangood policy. While all agreethat the policy issues willcontinue to need attention,we really have to direct ourattention to goodimplementation; particularlyin those developing countrieswhere issues such as classsize, lack of trained teachersand shortages of materialspose significant challenges.Data collectionThere was pretty muchuniversal agreement that weface real challenges related tolack of data on both thescope of “the need” andclassroom cost analysis. Thiswill be required to make thecase with policy makers whoare juggling competingp r i o r i t i e s .Extending the workThe representative fromUNICEF made the point thatwhile there are some goodmodel programs of inclusiveeducation we need to spendless time pointing to thosesuccess stories and more tosuccessfully “scaling-up”programs to the point wherewe are reaching significantnumbers of children. ICEVIand DbI should keep an eyeon the “child friendlyschools” that UNICEF isdeveloping. They clearly arelooking for help in developing“tools for implementation”that can help children withspecific disabilities succeed inthese schools.Representatives from threeWorld Bank regions; LatinAmerica, East Asia/Pacific andAsia gave examples of Wo r l dBank work to support“We felt this was a very encouraging sign thatpeople are looking beyond philosophy to therealities of implementation and doing so in amore thoughtful way ”inclusive education. Programsin Laos, Brazil werehighlighted. Pa r t i c u l a r l yimpressive was Mr. V.Sundaraman (Asia) who is anIndian economist at the Bankinvolved with education andsocial protection programs inAsia. He talked about bothdemand and supply sideissues and said that hisanalysis was showing thatmany disabled children ininclusive education weregetting poor access to thestandard curriculum andvirtually no access toextracurricular activities. He isnow completing a majorreport on the situation inIndia that could be veryhelpful to us. He did not offercomments to discourage butsaid that unless weobjectively look at thesituation as it is ther isn’tmuch chance that we aregoing to make any headway,particularly since the issue of“disability” in many countriesis lodged within the weakestand lowest level ministry.Everyone was amused whenhe said the current situationrelated to inclusive educationreminded him to of aresponse that Gandhi gavewhen asked what he thoughtof “British civilization” andresponded “that would be agood idea”.Larry commented that hefound Sundaraman brilliant; ayoung man with a keen mind.UNESCOUNESCO introduced a newpublication “EmbracingDiversity: Toolkit for CreatingInclusive Learning Fr i e n d l yEnvironments” wasintroduced by Olof Sandkull(UNESCO Regional Office,Bangkok). Kenneth Eklundsaid the “Flagship was builtand ready to sail” but therewas “no wind” i.e. funds.Both UNESCO speakerspointed out the need forbetter coordination betweenthe various UN agenciesworking on this issue.The UNESCO initiative, weboth felt to be very generaland “lame”, in that it reallylacked substance.ConclusionIn a nutshell: the politicallandscape seems to bechanging positively on theissue of inclusion. Rather thanit being viewed as a handyand popular political catchphrase,serious discussion isnow happening on the needto implement and not just towave banners. And theserious acknowledgementthat people with sensoryimpairment need somethingspecial due to their specialneeds is encouraging indeed.This is all good substancefor our dialogue within DbI todiscuss how we must interactwith these initiatives.JA N UA R Y – JU N E 2 0 0 5 • DbI Review • 4 5

C a m p a i g n sDoes Europe recognise deafblindness?“In 76% of the Member States of the European Union deafblindnessis not recognised as a distinct disability.”“In 67% of the Member States there is no specific programme for theidentification of newly diagnosed deafblind children and adults.”These are two of the findingsof a report that has beenproduced by the EuropeanDeafblind Network (EDbN) basedon a survey of organisations acrossthe European Union, which wascarried out to give a picture of therecognition of deafblindness acrossEurope.Continuing the campaignIn 2004, a Written Declaration(1/2004) on the needs of deafblindpeople was adopted by theEuropean Parliament calling for therecognition of deafblindness acrossEurope. In response to this a surveywas undertaken to find out theactual situation of recognition ofdeafblindness in the Member Statesof the European Union, in order tohighlight the change that needs tohappen. The survey covered a widerange of areas relevant to the needsof deafblind people and all sectionsof the population. As well as askingwhether deafblindness wasrecognised as a specific disability,the survey covered other importantareas. These included the provisionof specialist social care, systems foridentification and support to newlydiagnosed people, earlyintervention, the right to educationfor children, and a number ofquestions about communicationsupport and training forinterpreters. Th response was goodwith 21 of a total of 25 countriesresponding, plus Romania andN o r w a y.A taste of the results…One of the questions the surveyasked colleagues in each MemberState was whether training isprovided for interpreters andcommunicators supportingdeafblind people. In 38% of thosethat were represented in the surveythere is no training of this typeprovided. Without the support thatproperly trained interpreters andcommunicators can provide,deafblind people will remainisolated and unable to carry outeven the most basic everydayactivities. The survey results havealso highlighted the fact thatdeafblind people are not beinggiven the support they need towork and take part in training atwork in 48% of the countries whoresponded. In a more positive light,there was only one country wheredeafblind children do not have theright to receive an education.The report, called “Does Europerecognise Deafblindness?” makes anumber of recommendations,including the setting up ofprogrammes to identify newlydiagnosed deafblind people acrossthe European Union, so thatspecific services can be set up, orlegislation can be amended, toinclude deafblind people.The report will be available inEnglish and French, as these are thetwo main languages of theEuropean Parliament, and it will beused to highlight the actualsituation of deafblind people toM E Ps in the Parliament. It will alsobe useful for individuals who wantto show national decision makershow the situation of deafblindpeople in their own country needsto improve in comparison withthose living in other MemberS t a t e s .If you would like a copy of thereport please contact LucyDrescher atLucy.Drescher@sense.org.uk ortelephone +44 207 561 3400.4 6 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

C o n f e r e n c eDeafblind InternationalThe 2nd Asian Conference, January 29-31, 2006, Dhaka, BangladeshFirst Announcement“Deafblindness – Breaking Barriers in Asia”Organized byNational Forum of Organizations Working with the Disabled (NFOWD)a n dDeafblind InternationalThe first DbI Asia Conference with the theme of “Deafblindness – The Asian Awakening” wasorganized at Ahmedabad in India from 8-12 Fe b r u a r y, 2000. The Asian conference helpedseveral participants from developing countries to gain from the experience shared in theconferences. Encouraged from the success of first Asia conference, DbI has decided to organizethe second DbI Conference with the theme “Deafblindness – Breaking Barriers in Asia” fromJanuary 29-31, 2006 at Dhaka, Bangladesh.Important dates to notice are:Last date for abstract submission: 31 July 2005Last date for final paper submission: 15 November 2005Registration Fees will be charged as follows:Category of Pa r t i c i p a n t sIf Registration is completedBefore August 31September 01 onwardsIn-country Pa r t i c i p a n t s BDT 2,000.00 BDT 2,500.00Participants from Asia USD 75.00 USD 100.00Participants from Beyond Asia USD 200.00 USD 250.00Deadline of Registration for Reduced Fee: August 31, 2005and all registration will close on Monday, November 30, 2005.For more details, go to the website: www. d b i c o n f e r e n c e . o r g / a s i a /JA N UA R Y – JU N E 2005 • DbI Review • 47

Article R e v i e w shead hereLa Sordoceguera– un análisis multidisciplinarThis very comprehensivebook has just beenpublished by ONCE, inSpanish, and covers a hugeamount of information aboutdeafblindness. The first partof the book contains detailedsections on both vision andhearing and there follows asection on deafblindness andits unique challenges. Thisleads to an extensive chapteron communication andmethods that are used. Thefinal chapters contain,amongst other things, adviceworking with families andtechnical support and devicesthat can be helpful.This book has been written bycolleagues at ONCE and italso has a CD ROMISBN 84-484-0142-5Challenging behaviours in childrenwith multiple sensory impairmentAa p n o o t m u i sEducainment from theNetherlands arelaunching a new CD- R O M“It is estimated that overone third of the children withmultiple disabilities displaychallenging behaviors such ass e l f- i n j u r y, extremewithdrawal, non compliance,and aggression.”Together with the staff ofthe Children’s House atSergiev Posad, Russia, Drs. Janvan Dijk and Ton van derM e e r, with the cooperation ofD r. Catherine Nelson, fromthe University of Utah, havedeveloped a comprehensiveintervention plan to deal withsuch challenging behaviours.The CD-ROM works withthe learner, in a step by stepprocedure, to encourageunderstanding of the mostimportant principles ofbehaviour support (e.g.functional and A. B . C .analysis, observation of targetb e h a v i o u r, use of theMotivation AssessmentScale). It supports the learnerto formulate a hypothesis,about the possible reason forthe challenging behaviour,and how to developstrategies to prevent orchange it. In the second partof the CD-ROM children andstaff in real teachingsituations demonstrate howthe learned principles are putinto practice. Fo l l o w - u pstudies of the children areshown which clearlydemonstrate the effect of thei n t e r v e n t i o n .The approach is eclectic andso principles from differentdisciplines are applied.This CD-ROM will beavailable in Russian in thebeginning of March and inEnglish during the autumn of2 0 0 5 .Website: http://www.aapnootmuis.com4 8 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

Artic le C head o n f e r e here n c eDeafblind International World Conference 200725th – 30th September 2007Experience Spring in Perth, Western Australia.Senses Foundation’s ConferenceCommittee is developing ascientific program for theconference which will challengeand inform you and a social andrecreational program which willintroduce you to the uniqueness ofWestern Australia.Perth is one the most stunninglybeautiful cities in Australia yet it isone of the most isolated capitalcities in the world. With pristinewhite sand beaches, pleasantMediterranean climate, cleanenvironment and open relaxedlifestyle, Perth is the place to be inSpring 2007.Perth, named the “City of Lights”by astronaut John Glenn during his1962 orbit above the city and, asthe “Friendly City” by visitinginternational tourists, is the capitalof Western Australia and Australia’swestern gateway. Pe r t h offers aneasy-going lifestyle – the beautifulSwan River and inner-city parks likeKings Park add to the relaxed,natural feel.There is much to see anddo in this part of Australia,from swimming in crystalclear ocean waters toenjoying a taste of ruralAustralian living at relaxingcountry retreats andsecluded chalets. So makesure you have a look at oursuggestions for pre andpost conference holidays tomake the most of this fabulouso p p o r t u n i t y.Nestled on the banks of thescenic Swan River in Perth theBurswood International ResortHotel, chosen as the conferencevenue, is one of the world’s mostspectacular resort developments, inone of the world’s most beautifulc i t i e s .Located only 10 minutes from thedomestic and international airportsand a short five minutes from thecity of Perth, Burswood issurrounded by 100 hectares ofsuperbly landscaped gardens andp a r k l a n d s .Perth has much to offer, but thedifferences in the vast state ofWestern Australia provide a widerange of other features andattractions to visit. From the gorgesof Kalbarri National Park andwhales migrating past Kalbarri,Geraldton’s history, dolphins ofMonkey Mia, Carnarvon’s outback,Exmouth’s Coral Bay and theNingaloo Reef – the list is endless.Whatever you like to see or do,Western Australia has it.Come to Deafblind InternationalWorld Conference 2007 and seefor yourself!RubellaC o u r s e30 October – 5th November 2005-05-09Nordic Staff Training CentreThis course will first and foremost focus on deafblind adults and youngpeople with congenital rubella syndrome (CRS) and the challenges thisgroup face. The course will highlight the late manifestations and examinein more detail the studies that have been undertaken. The main emphasiswill be on assessing which medical and educational interventions arerelevant for people with CRS.The course tutors are drawn from all over the Nordic region and fromEurope and Canada.For information and application form: www.nud.dkJA N UA R Y – JU N E 2 0 0 5 • DbI Review • 4 9

Ma nagement Ne wsM a n a g e m e n tCommittee NewsThe next meetingof the DbIM a n a g e m e n tCommittee will beon Monday 1August, 2005 andSumitra Mishrathe next DbICouncil meetingis on Tuesday 2 August, 2005.Thesemeetings will take place in Slovakiaprior to the DbI European Conference.The major DbI eventscoming up are:The 2nd DbI Asian Conference willbe held from 29 – 31 January 2006in Dhaka, Bangladesh. The FirstAnnouncement for this conference isout! It is being hosted by the NationalForum of Organizations Working withthe Disabled (NFOWD) fromBangladesh. The theme of theConference is “Deafblindness –Breaking Barriers in Asia”. For detailsplease visit www.dbiconference.org orcontact the Conference Secretariat atnfowd@bdmail.netIf you register before 31 August2005, you can take advantage of theearly bird registration fee of $200 US.The regular registration fee is $250 US.Registration closes on 30 November2005. The abstracts submissiondeadline is 31 July 2005 and the finalpaper submission deadline is 15November 2005. Please send yourpapers to Akhil Paul, Chair of theScientific Committee, atakhil@senseintindia.org or fax at+91.79.279 11054.The 14th DbI World Conferencewill be held from 25–30 September2007 in Perth, Australia. It is beingorganised by Senses Foundation. InFebruary this year William Green andRichard Hawkes (President andSecretary of DbI) visited Perth to meetcolleagues from the Senses Fo u n d a t i o nand discuss plans for the conference.A Scientific Committee has now beenagreed by the DbI ManagementCommittee and the first meeting willbe taking place this August. We willbring you more information in the nextissue of DbI Review.Membership UpdateAll DbI members are encouraged torenew your membership, if you havenot done so already. Please quote yourspecially assigned membershipnumber in all communications.There are currently 622 members,including 50 corporate members, fromover 80 different countries.We are pleased to welcome all newcorporate and individual members tothe DbI family!If you know of any organisation thatmay be interested to join DbI as acorporate member, please pass ontheir details to the Secretariat now!DbI would like to express itsappreciation for the continuedsupport of the large and smallcorporate members. We stronglyencourage individuals to join DbI inorder to contribute to and widenfurther our global community in thefield of deafblindness.If you have any queries regardingthe status of your membership, pleasedo not hesitate to contact theSecretariat at secretariat@deafblindinternational.orgThe DbI SecretariatWe hope that you received your copy ofthe previous issue of DbI Review If youhave not received your copy, pleasecontact the Secretariat. We are alsokeen to update the information wehave about you and your organisation,so kindly make sure you send yourmembership renewal forms with yourlatest contact details to the Secretariat.If you have any queries regardingyour current membership or wouldlike to complete the membership formvia email, please contact SumitraMishra at: secretariat@deafblindinternational.org or post your queryat: DbI Secretariat, Post Box No:9601, JanakpuriDbI is a vital network forall involved in the field ofdeafblindness. In order tobest serve our members,it is crucial that we raisesufficient funds throughfees to finance our basicactivities. With this inmind, there is a Corporateas well as an Individualmembership form for youto fill in. Please encourageas many people aspossible to join.N o n -Voting Membersconsist of individuals,national networks andn o n - s u b s c r i b i n gCorporates. Non-votingmembers can contributeto the decision makingprocess of DbI througheither a corporatemember or aninternational network.Non-voting members willreceive a copy of DbIReview and other relevantDbI information.Non-voting membershipcosts d30 a year or adiscounted d100 forfour years.Voting Members arethe representatives ofcorporate memberswho have paid theirsubscription fees, andthe representatives ofrecognised DbI networks.There are now two tiers ofCorporate Membership:Large Corporates:Annual Fees betweend3,000 and d5 , 000Small Corporates:Annual Fees betweend300 and d1 , 500Corporate Members canbe nominated to sit onthe Council.5 0 • DbI Review • JA N UA R Y – JU N E 2 0 0 5

DbI memb er shipDeafblind International Individual Membership■ I would like to join DbI as an individual member■ I would like to renew my DbI individual membershipMember detailsMembership No.Title Surname First nameOrganisationJob TitleAddress (Line 1)Address (Line 2)Town/CityZip/Post CodeTelephone no.State/CountyCountryFax no.(Please include country and area codes)E-mail address:Are you:■ a deafblind person ■ a family member ■ a professionalDoes your organisation work primarily for/with:■ blind people ■ deaf people ■ deafblind people■ disabled people ■ other (please specify)Your contact details will be made available to DbI membersfor DbI purposes but will not be made available forcommercial purposes.DbI Review (please check one box in each category)A. I would prefer to receive DbI Review in:■ English ■ SpanishB. 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)Membership Fee please tick where appropriate■ I wish to pay an annual membership fee of d30■ I wish to pay for 4 years’ membership at the discountedrate of d100■ Please waive my membership fee as I am unable to pay itat presentCorporate MembershipThere are two tiers of Corporate Membership:Large corporatesAnnual fees between d3,000 and d5,000Small corporatesAnnual fees between d300 and d1,500■ We would like to join DbI as a Large/SmallCorporate Member (please delete as appropriate)We submit an annual fee of dCorporate members are entitled to receiveup to 25 copies of DbI Review. We would likein ■ English ■ Spanish(delete as appropriate)Member Details:OrganisationRepresentativeAddress (Line 1)Address (Line 2)Town/CityZip/Post CodeState/CountyCountryTel:(please include country & area codes)Fax:(please include country & area codes)Email:copiesHow 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 aspossible. By arranging your fee via bank transfer, we are able to keep banking charges to a minimum, thereby increasing thevalue of your membership fee. Naturally, for those of you who do not have access to this facility, we will be delighted to acceptyour 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 topay by cheque or credit card, maybe you could do so for four years instead of just the one.Payment method ■ Bank Transfer ■ Credit Card ■ ChequeA) Payment by Bank TransferIf paying by bank transfer, please make payment to thefollowing account:Name of Bank: RABOBANKAddress of Bank: Sint-Michielsgestel, The NetherlandsAccount Name: Instituut voor Doven: INZAKE DBIAccount Number: 11.29.09.825Swift Address: RABONL2UIBAN: NL31 RABO 0112 9098 25Date of Bank Transfer:Please quote the Swift Address and IBAN number in yourinstructions for Bank Transfer (If this is impossible and you haveto send a cheque or international postal order then pleasecontact us)B) Payment by Credit CardCard type: ■ VISA ■ American Express ■ MastercardCard no:Expiry date Name on card:Please note that credit card payments are made to Sense whothen credits DbI.C) Payment by chequeIf paying by cheque, please make cheques payable to‘Deafblind International’ and send to the address given below.If paying by Eurocheque, please make out cheque in euros.Please fax this whole page to 91-11-25618430 or return to:The Secretariat, Deafblind International, Post Box No 9601,Janakpuri, New Delhi – 110058, INDIA.JA N UA R Y – JU N E 2 0 0 5 • DbI Review • 5 1

Honorary OfficersThe World Association PromotingServices for Deafblind PeopleSmall Corporate MembersAU S T R A L I ACelestine HareThe Deafblind AssociationTel: +61 - 3 - 9882 7055Fax: +61 - 3 - 9882 9210Email: dba@internex.net.auc . h a r e @ d b a . a s n . a uAlan BaynhamRoyal Institute for Deaf andBlind ChildrenTel: +61 - 2 - 9872 0316Fax: +61 - 2 - 9873 3870E m a i l :a l a n . b a y n h a m @ r i d b c . o r g . a uJohn FinchAustralian DeafBlind Council( A D B C )Tel: +61 -04 - 2743 5243Fax: +61 - 3 - 9882 9210Email: dba@internex.net.auj f i n c h 2 @ v t o w n . c o m . a uSandy JointDeafblind Association ofQ u e e n s l a n dTel: +61-7-3831-4507Fax: +61-7-3393-0994E m a i l :s a n d y. j o i n t @ q e d . q l d . g o v. a uDebbie KarasinskiSenses Foundation IncTel: +61 - 8 - 9272 1122Fax: +61 - 8 - 9272 6600Email: dkarasinski@senses.asn.aua d m i n @ s e n s e s . a s n . a uAU S T R I AChrista HeinemannO s t e r r. Hilfswerk fur Ta u b b l i n d eTel: +43 - 1 - 602 0812 0Fax: +43 - 1 - 602 0812 17B E L G I U MMarlene DaelmanMPI SpermalieTel: +32 - 50 - 340 341Fax: +32 - 50 - 337 306Email: Marlene.daelman@mpisp e r m a l i e . b eC A N A D AEdward AbelaIndependent Living Residencesfor the Deafblind in OntarioTel: +1 - 905 - 770 4948Fax: +1 - 905 - 770 0598Email: ilrdbo@sympatico.caStan MunroeCanadian Deafblind andRubella AssociationTel: +1 - 519 - 372 0887Fax: +1 - 519 - 372 0312E m a i l :s t a n . m u n r o e @ s y m p a t i c o . c aD E N M A R KBirthe LaustrupNational Centre for CongenitalD e a f b l i n dTel: +45 - 98 - 155313Fax: +45 - 98 - 155323Email: laustrup@vcdbf. n j a . d kErik ThorsonNordic Staff Training Centre forDeafblind ServicesTel: +45 - 96 - 47 16 00Fax: +45 - 96 - 47 16 16Email: nud@nud.dkHenrik OttesonVidenscentret forD o v b l i n d b l e v n eTel: +45 - 44856030Fax: +45 - 44856099Email: dbcent@dbcent.dkPreben GundersenD o v b l i n d c e n t r e tTel: +45 - 99 - 31 89 00Fax: +45 - 99 - 14 73 44Email: prgu@dbc.nja.dkVibeke Fa u r h o l tDanish Parents AssociationGraeswangen 49330 DronninglundD e n m a r kF I N L A N DHeikki MajavaThe Finnish DeafblindA s s o c i a t i o nTel: +358 - 9 - 54 95 35 18Fax: +358 - 9 - 54 95 35 17Email: kuurosokeat@k u u r o s o k e a t . f ih e i k k i . M a j a v a @ k u u r o s o k e a t . f iEeva-Marja LoukolaThe Service Foundation for theD e a fTel: +358 - 9 - 58 031Fax: +358 - 9 - 580 3657Email: kuurojan.palvelusaatio@ d e a f- s e r v. f iI R E L A N DFinola LoughneyThe Anne Sullivan CentreTel:+353-1-289 8339Fax:+353-1-289 8408E m a i l :a n n e s u l l i v a n c e n t r e @ e i r c o m . n e tI N D I ABhushan PunaniBlind People’s AssociationTel: +91 - 79 - 630 3346Fax: +91 - 79 - 630 0106Email: blinabad1@sancharnet.inGopal Krishna AgrawalShikshit Yuva Sewa SamitiTe l : + 91 - 05542 - 242280Email: syssbst@sify. c o mN E T H E R L A N D SBernard de VriesVisio, LSS BTel: +31 – 55 – 5800800Fax: +31 – 55 – 5800890Email: info@visio.nlb e r n a r d . d e v r i e s @ l o o e r f. n lNetherlands Knowledge Centrefor the DeafblindTel: +31-343-442744Fax: +31-343-443232Marlies RaemaekersB a r t i m e u sTe l : + 31 - 343 - 526650Fa x : + 31 - 343 - 526798E m a i l :m . r a e m a e k e r s @ b a r t i m e u s . n lPieter HermsenK a l o r a m aTel:+31024 684 77 77Fax:+31024 684 77 88Email: p.hermsen@kalorama.nlK E N YAGeoffrey AtieliSense InternationalTel: 254 - 722 - 245861Fax: (00254)- 20 - 782597Email: geoffreya@senseint-ea.orgN O R W AYEvabritt AndreassenRegional Resource Centre forD e a f b l i n d / V K STel: 0047 - 55 - 92 34 85Fax: 0047 - 55 - 92 34 91E m a i l :e v a b r i t t . a n d r e a s s e n @ s t a t p e d . n oTonhild Strand HaugeSkadalen Resource CentreTel: +47 - 22 - 703 700Fax: +47 - 22 - 703 701E m a i l :t o n h i l d . s . h a u g e @ s t a t p e d . n oKnut JohansenAndebu DøvblindesenterTel: +47 - 33 - 438700Fax: +47 - 33 - 438720Email:adb@signo.orgk n u t . j o h a n s e n @ s i g n o . n oS I N G A P O R EKoh Poh KwangSingapore School for theVisually HandicappedTel: +65 - 2503755Fax: +65 - 2505348E m a i l :k o h p o h k w a n g @ s s v h . e d u . s gSOUTH AFRICAWilliam RowlandSouth African National Councilfor the BlindTel:+27 - 12 - 3461171Fax: +27 - 12 - 3461177Email: rowland@sancb.org.zaS PA I NDolores Romero ChaconA PA S C I D ETel +34 - 91 - 733 52 05Tel/fax +34 - 91 - 733 40 17Email: apascide@arrakis.esS W E D E NSven SjobergAssociation of the SwedishDeafblind (FSDB)Tel: +46 - 8 - 399000Fax: +46 - 8 - 6595042Email: sven@fsdb.orgf s d b @ f s d b . o r gLena HammarstedtNationellt Kunskapscenter fordovblindfragor (NationalCentre for deafblind issues)+46 87535940, +46738030808l e n a . h a m m a r s t e d t @ m o g a r d . s eMs Anna Lena SteensonSpecialpedagogiska institutet(The Swedish Institute forSpecial Needs Education)Tel: +46-15852300Fax: +46-15852317E m a i l : a n n a l e n a . s t e e n s o n @ s i t . s eS W I T Z E R L A N DBarbara BettenmanSchweizerische Stiftung fürTaubblinde, Heim Ta n n eTel: +41 - 1 - 714 71 00Fax: +41 - 1 - 714 71 10E m a i l :b a r b a r a . b e t t e n m a n n @ t a n n e . c hCatherine Wo o d t l iSZB Taubblinden- undH o r s e h b e h i n d e r t e n - B e r a t u n g( R e h a b i l i t a t i o n )Tel:+ 41 (0) 41 228 62 23Fax:+ 41 (0) 41 228 62 25Email: woodtli@szb.chUNITED KINGDOMKate LockettSense EastTel: +44 - 1778 - 344921Fax: +44 - 1778 - 380078Email: kate.lockett@sense.org.ukP r e s i d e n tWilliam GreenLega del Filo D’OroVia Montecerno 160027 Osimo (AN)I TA LYTel: +39 -071 – 72451Fax: +39 – 071 – 717102Email: green.lfo@usa.netVi c e - P r e s i d e n t sBernadette KappenOverbrook School for the Blind6333 Malvern AvenueP h i l a d e l p h i aPA 19151U S ATel: +1 – 215 – 877 0313Fax: +1 – 215 – 877 2466Email: bmk@obs.orgLarge Corporate MembersF R A N C EJean-Marc CluetFrench Deafblind ConsortiumTel: +33 - 1 - 4627 4810Fax: +33 - 1 - 4627 5931Email: a.m.p.s.a@wanadoo.frG E R M A N YWolfgang AngermannGerman Deafblind ConsortiumTel: +49 - 511 - 510080Fax: +49 - 511 - 5100857Email: dtw@topmail.deAxel HardenbergC h r i s t o f f e l - B l i n d e n m i s s i o nTel: +49 - 6251 - 131 247Fax: +49 - 6251 - 131 165Email: axel.hardenberg@cbmi. o r gI TA LYRossano BartoliLega del Filo d’OroTel: +39 - 071 - 72451Fax: +39 - 071 - 717102Email: info@legadelfilodoro.itN E T H E R L A N D STon VisserV i a t a a lTel: +31 - 73 - 55 88 111Fax: +31 - 73 - 55 88 994Email: A. V i s s e r @ v i a t a a l . n lNetworksA C Q U I R E DD E A F B L I N D N E SSN E T W O R Kc/o Ges RoulstoneSense East72, Church Street,Market DeepingPeterborough,Linconshire, PE68ALTel: +01778-344-921Fax: +01778-380-078E m a i l :g e s . r o u l s t o n e @ s e n s e . o r g . u kCHARGE NETWORKC/o David BrownCalifornia Deafblind Services5016 Mission StreetSan Fr a n c i s c oCA94112, USATel: +1-415-239-8089Fax: +1-415-239-0106E m a i l :d a v i d b r o w n 1234 @ h o t m a i l . c o md m b r o w n 1 @ p a c b e l l . n e tC O M M U N I C AT I O NN E T W O R Kc/o Jacques SouriauC R E S A MLa Rivardiere52 rue de la Longerolle86440 MIGNE-AU X A N C E SF R A N C ETel: +33 - 5 - 49 43 80 50Fax: +33 - 5 - 49 43 80 51E m a i l :J a c q u e s . s o u r i a u @ c r e s a m . o r gc e n t r e . r e s @ c r e s a m . o r gGraciela Fe r i o l iHilton PerkinsIndependencia 376Planta Baja Apto. ‘D’5000 CordobaA R G E N T I N ATel: +54 – 351 – 423 4741Fax: +54 – 351 – 423 4741h p e r k i n s @ c u i d a d . c o m . a rS e c r e t a r yRichard HawkesSense International11 – 13 Clifton Te r r a c eFinsbury Pa r kLondon N4 3SR, UKTel: +44 – 20 – 7272 2881Fax: +44 – 20 – 7272 6012Email: richard.hawkes@ s e n s e i n t e r n a t i o n a l . o r g . u kP O R T U G A LAntonio RebeloCasa Pia de LisboaTel: +351 - 1 - 361 6650Fax: +351 - 1 - 363 34 48Email: cpl.educa@mail.telepac.ptS C O T L A N DGillian MorbeySense ScotlandTel: +0141-564-2444Fax: +0141-564-2443E m a i l :g m o r b e y @ s e n s e s c o t l a n d . o r g . u kS PA I NDaniel Alvarez ReyesO N C ETel: +34 - 1 - 345 3697Fax: +34 - 1 - 345 4157Email: asesorci@once.esDolores Romero ChaconA PASCIDE - Spanish Associationof Parents of Deafblind Pe o p l eTel: +34-91-733 5208Fax: +34-91-733 4017Email: apascide@arrakis.esC O N G E N I TA LD E A F B L I N D N E SS INA D U LTS NETWORKc/o Dominique Spriet30 Rue BarbesF-93600 Aulnay/BoisFr a n c eTel: +33 - 1 - 48 69 68 64Fax: +33 - 1 - 48 69 68 64E m a i l :s p r i e t . d o m i n i q u e @ w a n a d o o . f rEDbNC/o Ricard LopezA P S O C E C AT & APA S C I D EC/ Almeria, 31 AT I CE S P-08014, Barcelona, SpainTel: +34-678-712-619Fax: +34-678-782-600Email: talking3@teleline.esEUROPEAN USHERSYNDROME NETWORK( E U S N )C/o Carol Brill500 Ballinteer Road, DundrumDublin 16, IRELANDTe l : + 353 - 1295 - 1387Email: doranbri@indigo.ieUSHER SYNDROMESTUDY GROUP (USS G )c/o Mary GuestS e n s e11 - 13 Clifton Te r r a c eFinsbury Pa r kLondon N4 3SRU KTel: +44 - 20 - 7272 7774Fax: +44 - 20 - 7272 6012Email: Mary. G u e s t @ s e n s e . o r g . u kT r e a s u r e rTon VisserV i a t a a lTheerestraat 425271 GD Sint-MichielsgestelThe NetherlandsTel: +31 – 73 – 55 88 280Fax: +31 – 73 – 55 88 239Email: A. V i s s e r @ v i a t a a l . n lFinance Office:ViataalInformation Officer:Eileen Boothroyd, SenseDbI Review Editor:Eileen Boothroyd, SenseEmail: eileen.boothroyd@ s e n s e . o r g . u kS W E D E NSergei SorokinResurscenter Mo GardTel: +46 - 122 - 23600Fax: +46 - 122 - 23690Email: sergei.sorokin@mogard.seU KTony BestS e n s eTel: +44 - 20 - 7272 7774Fax: +44 - 20 - 7272 6012Email: tony. b e s t @ s e n s e . o r g . u kU S ABarbara MasonPerkins School for the BlindTel: +1 - 617 - 972 7221Fax: +1 - 617 - 923 8076E m a i l :m a s o n b @ p e r k i n s . p v t . k 12 . m a . u sBernadette KappenOverbrook School for the BlindTel: +1 - 215 - 877 0313Fax: +1 - 215 - 877 2466Email: bmk@obs.orgM U LT I P LY DISABLEDV I S UA L LY IMPA I R E DEUROPEAN NETWORKc/o Kent LundkvistEkeskolan Resource CentreBox 9024, S-70009, OrebroS w e d e nTel: +46 - 19 - 6762 151Fax: +46 - 19 - 6762 210Email: kent.lundkvist@sit.seNORDIC CULT U R EN E T W O R KC/o Lone Po g g i o n iVia G. Deledda, 1906074 Ellera (PG)I t a l yTelefax: 0039 075 5179 413Email: esbjerg@aliceposta.itTA C T I L EC O M M U N I C AT I O NWORKING GROUPC/o Bernadette van den Tillart15175 Prairie RoadSouth SolonOH 43153U S ATelefax: +1-740-426-6728Email: bernadettevandent i l l a a r t @ t i s c a l i m a i l . n lSIBLINGS NETWORKSabine Ke r s t e nBaal 73B-3980 Te s s e n d e r l oB e l g i u mPhone/fax: +32 13 67 67 50Email: siblingsnetwork@gmx.net5 2 • DbI Review • JA N UA R Y – JU N E 2 0 0 5