Beacon The newsletter of the Australian DeafBlind Council No. 19 April 2001 National Forum on Deafblindness A National Forum on Deafblindness is to be held in Sydney in July. This is a result of letters which the Australian DeafBlind Council wrote to the Minister for Family and Community Services (FACS) late last year. FACS is providing $5000 to help stage the forum, which is being held under the auspices of the Royal Blind Society. It is hoped that people from around Australia with an interest in deafblindness will attend the forum, which will be held on 5 and 6 July. Invitations will go out shortly. Recommendations from the forum could be included in the negotiations over the Commonwealth-States Disability Agreement which will take place later this year. The Annual General Meeting of ADBC will be held at the Royal Institute for Deaf and Blind Children at North Rocks at 6 pm on Saturday 7 July, the day following the forum. Notices will be sent out to members soon. ADBC suggested these dates because they are followed by a three-day seminar being staged in Sydney by Renwick College. The seminar, entitled "Dual Sensory and Multiple Disability - Implications for Learning and Program Development", will be given by Terry Rafalowski-Welch, former Project Director of the Washington State Deafblind Project. Following ADBC's letters to the Minister, Fiona Carberry, a senior member of FACS staff, met in Sydney with representatives of ADBC and the Royal Blind Society to discuss the concerns of ADBC members. It was then agreed that the forum should be held to enable a wide-ranging discussion of matters of concern to the deafblind community in Australia. During a subsequent visit to Melbourne with another member of the FACS staff, Joanne Hutchinson, Fiona undertook to investigate sources of funding for ADBC meetings. She will also look into options for supporting people with Deafblindness as part of the Commonwealth's Social Participation concept and a number of other funding issues such as the DBA Link training program and support for people with deafblindness to attend overseas conferences. President's Report From Irene McMinn Hello everyone. Well, here we are again. I hope you all had a wonderful Christmas and New Year holiday. Here in Sydney we have just had the one of the hottest and wettest summers on record. I wonder if we can blame that on the greenhouse effect. So then what is happening with ADBC -- quite a lot, actually. In December a meeting was held in Sydney with Fiona Carberry, a senior staff member from the Commonwealth Department of Family Services. Unfortunately I was unable to attend that meeting but I was informed of what happened. Following the meeting Sharon was able to send Fiona a copy of the video "Assume Nothing" which she enjoyed and she said it helped her to understand some of the problems of Deafblindness. As a result ADBC hoped some funding would be made available to run a forum on Deafblindness. This is now available and the forum will take place in July. This will be a first step in addressing the problem of unequal service standards across Australia. Our next Biannual Deafblindness Conference is to be held in Sydney in July 2002 during the school holidays in conjunction with the Renwick College Winter School. The conference will start on the Thursday night with a social get together, Friday and Saturday are conference days, the ADBC AGM will be held on the Sunday followed by a social day and Monday will be a technology day. It sounds exciting and we are looking forward to seeing you there, meeting old and new friends. We welcome all suggestions and comments on the conference. If any of you have suggestions of what you would like to see there please let us know. We are very open to ideas from Deafblind people. It is your conference so let us know what you think. Don't forget the Helen Keller Conference in New Zealand later this year. I am sure that our New Zealand friends are looking forward to seeing as many of us there as possible. This is a world conference so we will meet Deafblind people from all over the world. It should be very interesting and a great chance to find out what is happening in other countries. ADBC has just written letters to both Blind Citizens Australia and the Deafness Forum about working with us to address the question of advocacy for Deafblind people. We are hoping to work with them in an advocacy alliance. Deafblind Awareness Week is coming up again this year. The National Launch will probably be held in Perth and they will be responsible for getting some media coverage. But don't forget to plan some great awareness activities for yourselves. I will talk to you again next time. World Federation of Deafblind Persons The inaugural meeting of the World Federation of Deafblind Persons will be held in conjunction with the Helen Keller Conference in Auckland, New Zealand, in October. ADBC has nominated President Irene McMinn to be Australia's representative on the WFDB Council and ADBC committee member Sven Topp to be the regional representative. Among the topics to be discussed at the conference, ADBC has suggested that a universal symbol on canes and Seeing Eye dog harnesses should be agreed on and that attention should be given to the special needs of low-functioning deafblind people around the world. Vale Hugh Jeffrey From Trish James Many members will have met Hugh Jeffrey who died on 1 February at the age of 83. Hugh was blind all his life and lost his hearing as he grew older. This was a tragedy for him as he spent much of his life working in Melbourne as a Music Teacher. Hugh was always a great advocate for people who are blind and for people who are deafblind. He became a good friend to many people over the years and he will be sadly missed. Hugh was one of the founding members of Blind Citizens Australia and worked hard to improve the lives of blind and deafblind people. He was well known nationally and internationally for his work and for his teaching. Thanks to you, Hugh, Australia is a better place for people who are blind and people who are deafblind. We will miss you. Deafblindness Issues The following are some of the issues that the ADBC Committee will be addressing this year: * a drive for new members * a drive for more corporate members to increase income * DeafBlind Awareness Week, which will consist of a national launch, state launches and television promotions * to continue support for the training of staff working with deafblind people that is offered at Renwick College, publicise relevant courses in Beacon, and to look for funding for a national training scheme, including distance learning * an investigation into improved support options for people with deafblindness * to keep pushing on the issue of unequal standards and availability of services across states * the design and production of ADBC brochures * support for the expansion of The Deaf-Blind Association's The Link computer training program A number of other issues which have been raised by members will be raised at the national forum in July. These could include an investigation into the discrepancy between the cost of accessing services for people with hearing and vision impairments, and the cost involved for people without these impairments; for instance, communication facilities such as TTY's are more expensive to obtain than standard voice telephones, and items like VCR's do not come with manuals in an accessible format such as braille, so even simple problems may need to be attended to by a technician Royal Blind Society Services From Trish James The Royal Blind Society is planning to provide services to people who are deafblind. At the moment, the managers and staff of RBS are working on which services can be provided and working out what resources will be needed to deliver the services. It is an exciting time but it will take a little longer yet as the Rehabilitation Program's staff need to receive some extra training. Everyone is very keen to increase the services but we all need to be patient with each other for a while. If you would like further information then you can ask to speak to Christine Maple who is working hard on the planning. News from WA From Sharon Barrey Grassick The amalgamation of WA Deafblind Association/Royal WA Institute for Blind has been accepted by both Committees of Management. The launch of the name and logo of the new organisation has been delayed due to legalities involving searches for names that are already registered. The new single agency will focus on people who are deafblind, blind and multi-sensory impaired, and there will be a department of Special Deafblind Services. The combined resources will provide a greater level of support for people with deafblindness and their families. It is hoped that the new agency name and logo can be launched in the very near future. Stay tuned! On Sunday 8 April about 70 people, including 25 adults and children with deafblindness and their families, are due to cruise on the Swan River. The WA Deafblind Association has been able to organise 10 skippers from the Royal Freshwater Bay Yacht Club to volunteer their boats and crew. A variety of yachts and power launches will form a flotilla to cruise the river while sipping wine and munching cheese and crackers. Those of you lucky enough to have participated in a similar event during the 5th National Deafblind Conference last year will know what wonderful fun this is! For many of our "sailors" this will be their first time out in a pleasure craft. Some will have the opportunity to help hoist sails, and take the helm. WADBA is very grateful to the Royal Freshwater Bay Yacht Club and the skippers who have once again so generously volunteered their boats and time. But wait, there's more! Yes, WADBA is producing yet another training video. Feedback received for "Where do I begin? Developing Communication With Children Born Deafblind", has been incredibly positive, with many copies being requested from around the world, including Canada, USA, Holland, UK, New Zealand and France. This next video will respond to the need for a training tool which focuses on communication and interaction with infants and young children who have multiple disabilities, including deafblindness. The footage that we have been able to tape so far is fantastic and will provide much valuable information to parents, carers and direct support providers, including respite providers, health professionals, therapists and teachers. We anticipate that this video will be available by mid-year. For those who have not yet ordered our first deafblind awareness and training video, "Assume Nothing", or "Where do I begin?", these videos can be ordered from WADBA at PO Box 14, Maylands WA 6051. ADBC Web Site The ADBC Web site has so far been visited by more than 8000 people, many of them from overseas. The address of the site is: http://internex.net.au/~dba. Most people with Deafblindness in Australia who have email are linked through the DB Aust email list which enables members to send messages to everyone else on the list through just one address. Anyone interested in joining the list should send a request to Bob Segrave at dba@internex.net.au. Letter to the Editor From Jill Stephan Dear Editor, In the current issue of Beacon Irene McMinn refers to "celebrating Helen Keller's birthday and achievements as the most well-known and successful deafblind person". This is something I feel very strongly about. What Helen Keller had was the most successful teacher/carer/companion/friend. What Helen Keller achieved was at the total sacrifice of another person's life. It is Annie Sullivan who should be celebrated. The Keller family had the financial means to employ her and were fortunate in that the woman herself was remarkable. Many years ago, when my son was "only" deaf, I had a letter in the Sydney Morning Herald and was immediately contacted by several profoundly deaf women who said they had been delighted by my letter in which I expressed these sentiments. They said that, as children, they'd had Helen Keller "rammed down their throats" and were "sick to death" of hearing about her. We can admire her, yes. But please not as a person of achievement made on her own.. If she is mentioned as a role model, let it be in conjunction with the woman who sacrificed her own life for her. Annie Sullivan was the best-known and perhaps the greatest "carer". I was unable to achieve what she achieved and, as you may have heard, my desperately sad Usher's son Laurence died accidentally under the wheels of a train at Maylands Station, Perth, on 4 September this year. Yours sincerely, Jill Stephan 9 December 2000 Hats Off to NSW Department of Education and Training By Dr Mike Steer, Renwick College Education, is one of the important influences in shaping a person's life. It expands intellectual and social horizons and establishes social relationships that form the basis for inclusion in adult life. All Australian students, including those who are deafblind, have a moral right to be educated in school environments that fully include them. They must be included, wherever possible, in the classroom, the playground and in extracurricular activities with their non-disabled peers and as well receive the specialised supports and services they require by virtue of their disability. To achieve these ends, additional supports and resources are necessary. It becomes critically important, therefore, that the organisations charged by society with providing quality educational services adopt service eligibility definitions and assessment criteria that are aimed at addressing the often complex and intensive needs of the clientele they serve. To this end, the New South Wales Department of Education and Training (DET) has recently taken steps to redefine those it will accept as deafblind for purposes of receiving additional resources. Throughout the 1980's and until January 2001, the DET definition of Deafblindness had been as follows: In order to be considered deafblind in the public schools of New South Wales, students must have a current diagnosed vision impairment which details a permanent vision loss of 6/60 or less in the better eye corrected, or less than 20 degrees field of vision. They must also have a current audiogram and report from Australian Hearing which indicates a sensory-neural or permanent conductive hearing loss of greater than 90 decibels in both ears. The degree of vision and hearing loss are not the sole determinants of educational need. There must be evidence that the student has a dual sensory impairment that uniquely impacts on their ability to learn and communicate: a severe functional difficulty in responding to auditory and visual stimuli; a requirement for an alternative means of communication and/or the use of other senses (eg Tactile) or aids; and the need for an intervention which cannot be provided by a program for students with hearing or vision impairment. Analysis and debate on the definition resulted in the realisation by Department officials that it was an overly stringent and not particularly accurate definition. As of February 2001, the new definition is as follows: Students must have a hearing and vision impairment, both at levels that severely impact on their ability to learn and which result in unique educational needs. In particular, these students will require an alternative means of communication (generally a tactile system) and/or highly specialised technology to facilitate their communication. There must also be evidence that the combined impact of the dual sensory impairment requires an intensive educational provision beyond that provided for students solely with hearing or vision impairment, or severe intellectual disability. In order to qualify for additional assistance at school, the approval of a Coordinator of Student Counselling and Welfare, together with a Coordinator of Special Education (both are positions at senior specialists in the DET system), before a student can be confirmed as having met the criteria. World Blind Union Fifth General Assembly Melbourne Australia A summary of the Business Report given by Mr. Daniel Averez Reyes Mr Averez Reyes Chairman of the World Blind Union Standing Committee (WBU) gave a short account of the World Federation of Deafblind Persons activities since the last WBU Assembly. He commenced with a rundown on the difficulties faced by people who are deafblind in their day-to-day life, explaining that due to the combination of blindness and deafness these problems are compounded and therefore deserve special attention, hence the creation of the WFDB as a separate body from, but supported in its infancy by the WBU. The last WBU General Assembly in Colombia in 1996 established an international committee made up of people from the deafblind community. The creation of the WFDB helped answer questions such as which organisation should a deafblind person be aligned with, and which committee should be responsible for various deafblind activities and projects at a world level. Some difficulties have been encountered along the way. Acquiring professional interpreters and lack of funds for committee members to travel abroad has meant that meetings such as one arranged in Madrid earlier in the year have had to be cancelled. Fax and email have prevailed when no official meeting could take place, and the WFBU is proud to elect New Zealand as the host nation of the 7th Helen Keller World Conference in October 2001. Other achievements of the committee include the development of the deafblind support in Latin America such as in Uruguay where the government are now considering the human rights of people who are deafblind and have acknowledged deafblindness as a distinct disability in its own right. The committee has also been able to provide a small amount of financial support to deafblind persons throughout the world, as well as establishing moral support such as counseling; particularly in both Africa and South America. Currently the committee is working on an electronic list of names and addresses of deafblind support agencies and programs worldwide. Mr Averez expressed his enjoyment of being the Chairman of the committee over the last 4 years and thanked the WBU for providing its support in the creation of the WFDB and its continuing support until the WFBU reaches independence. Sense Head Retires Rodney Clark has decided to step down as Chief Executive of Sense. After 20 years that has seen Sense become the largest deafblind organisation in the world and one of the strongest disability organisations in the UK, Rodney has decided to take early retirement from 31 March 2001. The recruitment of a new Chief Executive has already begun and Sense is hoping to have someone in post by June 2001. The point of contact for all international matters continues to be Richard Hawkes. From a DbI point of view Sense International manage the Secretariat and this will not change. The President and Vice-President will be discussing the whole situation and there will be more to report after the next Management Committee meeting in April 2001. Great Minds Meet: Charles Dickens and Laura Bridgman By Dr Mike Steer, Renwick College In 1837, Charles Dickens wrote The Pickwick Papers and promptly skyrocketed to fame. Soon his reputation was as great in America as it was in England. In January 1842, he and his wife Catherine sailed for Boston, Massachusetts on the Cunard steamer Britannia. The resultant harrowing experience is recounted in his American Notes, published in 1907. Dickens, as a famous young author, who had published five major novels in as many years was, as a radical with democratic political views, well disposed towards the relatively new republic in the new world which shared and indeed promulgated many of his ideals. On arrival, he declared himself most impressed with the City of Boston, in particular its many fine public buildings, private houses and fine public parks. Soon after arriving he visited the Perkins Institution and Massachusetts Asylum for the Blind, a charitable organisation founded in 1833, which is today the world-famous Perkins School at Watertown, home of the Perkins Brailler. The School's first director was Dr Samuel Gridley Howe one of the great names in American special education. It is likely that there was at the time of Dickens' visit, no person in the United States more concerned about people in need, or who worked more effectively in realising appropriate programs for them than Dr Howe. At Perkins, Dickens found the children at work in the classrooms and was delighted to observe that they did not wear a school uniform. Good order, cleanliness and comfort pervaded every corner of the building they were in. The various classes gathered around their teachers, answered the questions put to them with readiness and intelligence, and in a cheerful contest for precedence which "pleased me very much", stated Dickens. It was then that Dickens met Laura Bridgman, who was seated in a little enclosure, made by school desks and forms, writing her daily journal. But soon finishing this pursuit, she engaged in an animated communication with a teacher who sat beside her. Laura had been born in Hanover, New Hampshire (a neighbouring State) on 21 December 1829. She was described as being a very sprightly and pretty infant, but was feeble and subject to seizures. At about 20 months she suddenly sickened and after five weeks fever, emerged deaf, blind and without speech. She was kept in bed in a darkened room for another five months. It was another year before she could walk unsupported and two years before she could sit up all day. It was observed that her senses of smell and taste had also almost disappeared. As soon as she could walk she began to explore her home, learned to sew and knit a little. In 1837, her parents finally took her to Dr Howe at Perkins School. Her initial education involved the labelling of everyday articles; spoons, knives, shoes, with small labels bearing the item's name in raised print. Later, instead of labels, she was given individual letters on separate pieces of paper and they were arranged side by side to spell such words as book, or key. It was a highly mechanical process that left her confused, but imitating everything her teacher did. After weeks of persevering, one day a breakthrough occurred and she realised that she could make a sign for anything in her mind and communicate it to her teacher. Laura's education then progressed to a using a board on which was placed movable metal printers' type. On an article being handed to her, she would rearrange the type to spell its name, reading the result with evident pleasure. As her education progressed her vocabulary increased, until she was taught to represent the different letters with rudimentary finger spelling. Soon, to the delight of her teachers she was using the manual alphabet rapidly, correctly and eagerly. All these developments occurred within a year and a half of her admission to the school. Reports of the time indicate that she chooses for her companions, those children who are intelligent and can talk best with her. Her imitation skills rapidly developed and sometimes pretended that her doll was sick, playing at looking after it and giving it medicine. She was found to have an insatiable thirst for knowledge and a quick perception of the relationship between things. There are several examples of Laura's handwriting on display in the Library at Perkins. The samples show a square, fairly legible script. During their meeting Dickens asked Laura to write something for him and she signed her name. The visitor was delighted by Laura's intelligence, skill and vivacity. He was highly impressed with her teachers and in his American Notes quotes extensively from Howe's Ninth Annual Report (1841) to the Perkins Trustees. As far as is known, Laura Bridgman was the first deafblind person to be formally educated. On his return to England after having enjoyed an extensive tour of the States, his account of their meeting made her name widely known in Europe and added substantially to the fame of the school that had help educate her. Dickens died in 1870, Laura in 1889. Dickens' American Notes, edited by American academic F.S. Schwarzbach has recently been republished in softcover by the Everyman Library. Any Dymocks bookstore will be able to order a copy at A$19.95 (plus GST). T-Shirts for Sale Victorian Ushers Club is very pleased to send you a friendly message that we are selling a T-shirt with a special design printed on it of Deafblind communication which is called tactile sign. See the design below. It will be a navy blue T-shirt with white printing on the back. The small logo on the front (left side chest) is DEAFBLIND COMMUNITY. They cost $20 each and the postage is free! The size is small, medium, large and extra large. If anyone is interested to order or for more information, please do not hesitate to contact Heather Lawson on TTY (03) 9898 7077 email: lawsohe@rvib2.rvib.org.au or Richard Howell TTY (03) 9870 5733, Fax 9870 4170. E-mail: rmhowell@ozemail.com.au Thank you for your interest and supporting us to improve awareness to give people a better understanding of what we use for good communication. Kind regards, Victorian Ushers Club Committee ADBC Contacts Western Australia Sharon Barrey Grassick (ADBC Secretary) PO Box 14, MAYLANDS, WA 6051 Phone 08 9272 1122 Fax 08 9271 3129 TTY 08 9370 3524 E-mail: wadba@nw.com.au Sven Topp 58 Mayfair St Mt Claremont WA E-mail stopp@echidna.stu.cowan.edu.au Queensland Brenden Borellini (ADBC Vice-President) PO Box 165 St Lucia Queensland 4069 Mrs Irene Hashish (ADBC Committee) c/- Deafblind Association Queensland Inc. 8 Locke St Warwick Qld 4370 Tel (07) 3345 6758 NSW Ms Irene McMinn (ADBC President) Bathshean 5 Kitchener Rd Cherrybrook NSW 2126 Dr Mike Steer (ADBC Committee) Senior Lecturer (Sensory Disability) Renwick College Royal Institute for Deaf & Blind Children Private Bag 29 Parramatta NSW 2124 Phone (02) 9872 0303 Fax (02) 9873 1614 E-mail rcms@cc.newcastle.edu.au Victoria John Finch (ADBC Treasurer) E-mail: j.finch@dba.asn.au Bob Segrave (ADBC Administration) E-mail dba@internex.net.au The Deaf-Blind Association PO Box 267 Clifton Hill Vic. 3068 Tel (03) 9482 1155, fax (03) 9486 2092, TTY (03) 9489 3091 http://www.dba.asn.au Beacon No. 19 April 2001 15 14 15 15