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With individual support and tuition, people who are deafblind can attain the same level of communication and education as others within the community, and it is their human right to be given this opportunity. Today I wish to show that the "Too Hard Basket" is an economic problem rather than a situation pertaining to a group of people who are "too hard to teach".
The accepted definition of deafblindness is "Deafblindness includes all people whose lives are significantly restricted by combined sensory impairment". In other words a person who is deafblind is not necessarily totally deaf and totally blind. Deafblindness is a unique disability, it is not just the addition of deafness and blindness, the combined sensory loss of sight and hearing is greater than the sum of its parts, causing profound communication difficulties and isolation. There is a wide variation, in these difficulties, from one person to another according to the cause of deafblindness and the degree of either sensory loss.
There are more than 70 known causes of deafblindness, each cause bringing a unique set of needs for the individual. I shall discuss 3 primary routes, through which people come to deafblindness, other than through aging, and the particular issues faced by each group in relation to their gaining, or continuing with, their education. But before I do this I would like to give some history of deafblind communication and education and draw analogies with the history of deaf education.
Education of children who are congenitally deafblind in Australia can, over the past 2 or 3 decades, be compared with that prior to 1750, of people who were deaf. Oliver Sacks (1989) wrote that prior to 1750 the situation of the prelingually deaf was calamitous: "Unable to acquire speech; unable to enjoy free communication with even their parents and families; confined to a few rudimentary signs and gestures; cut off, except in large cities, even from the community of their own kind; deprived of literacy and education and all knowledge of the world; forced to do the most menial of work; living alone, often close to destitution; treated by the law and society as little better than imbeciles - the lot of the deaf was manifestly dreadful". That was 250 years ago, yet these are words that could be describing the life situation of many people living in Sydney, now in their 20s and 30s, who are congenitally deafblind from Rubella Syndrome or from Infantile Meningitis. Many of these people have been labelled profoundly intellectually disabled, because of their inability to absorb knowledge of their world in the way other children learn, by listening to and watching their parents and those around them. Hopefully this situation is changing, with early intervention, but lack of one to one support and education for children, as they get older, can still prevent children from becoming literate and subsequently having access to education.
None of us can remember how we "acquired " language. This was done automatically from communicative exchanges, from birth, with our parents and other family members. We are born with innate senses, we develop motor skills automatically as we proceed through infancy, but we cannot acquire language by ourselves, even though we have the innate ability. This can only be activated by another person, or persons, who have linguistic ability and competence. It is usually the mother's language, internalised by the infant, that transforms its world from sensation to sense. Oliver Sacks writes that, "Profound childhood deafness is more than a medical diagnosis; it is a cultural phenomenon in which social, emotional, linguistic, and intellectual patterns and problems are inextricably bound together". Children who are deaf, however, do learn much about their world by seeing what transpires around them. They learn language through sign and, today deafness is accepted as a culture, not a disability. Throughout the world deafblindness is also being accepted as a culture but, to become part of this community and culture, it is necessary for deafblind people to have equal opportunity for language acquisition and education so that they can communicate within their community and also learn of the world both inside and outside this community. Rod MacDonald, the President of the American Association for Deafblind and deafblind himself writes, "Deafblind culture is at the present time in a relatively primitive, yet important, stage of development because its members do not usually have many opportunities for frequent social interaction with peers...". This can change in today's world, with the use of TTY phone contact and via e-mail, with Braille, Large Print or synthesised speech output - according to the needs of the particular deafblind person. This can only be achieved by education. Education must be given the highest priority and, instead of money for education being continuously decreased, money must be made available to give individual support and tuition where needed. This does need to be one to one communication and tuition if the person who is deafblind is to receive the knowledge that is being imparted.
Such one to one tuition has proven most successful for people who are deafblind and, still looking at the history of deafblindness, we have many examples of what can be achieved. Education that was achieved with Helen Keller in the United States, and in the same era here in Sydney when the "Institution" (Darlington School), the fore-runner of the Royal Institute for Deaf and Blind Children, was a spirited and flourishing school.
In the United States, in 1882, Helen Keller became deafblind at the age of 19 months when stricken with illness. When Helen was almost 7, a teacher, Annie Sullivan came into her life and it was with this individual tuition that Helen came to learn that objects have names. Once a breakthrough was made, when she was taught that that "wonderful cool something that was flowing over (her) hand", was called w-a-t-e-r, the small Helen quickly learned to identify everything around her. In Helen Keller's words (1903), "I recall many incidents of the summer of 1887 that followed my soul's sudden awakening. I did nothing but explore with my hands and learn the name of every object that I touched; and the more I handled things and learned their names and uses, the more joyous and confident grew my sense of kinship with the rest of the world". Helen Keller said of herself that before she had mastered the maze which we call communication that she was "...a wild, destructive little animal". Helen went on to study at the Cambridge School for Young Ladies in 1896, in preparation for her tertiary education at Radcliffe, where she graduated in 1904. Throughout this time Annie Sullivan continued to interpret for her with, over time, more and more tutors learning to finger spell on her hands and more texts being transcribed into Braille.
Closer to home, however, there is a woman we in Australia have heard very little about but who certainly deserves mention. Her name was Alice Betteridge, and she became deafblind at the age of 2, from Meningitis. Alice's entrance into the world of communication and thought was remarkably like that of Helen Keller, taking place just a few years later. Roberta Reid, who had just graduated from Sydney University and had taken a teaching position at the "Institution", was her one to one tutor. Alice Betteridge's family lived on a farm near Mudgee and, at the age of 9 her parents brought her to the "Institution" to be educated. Fortunately for Alice, Roberta Reid had recently started teaching at the school and was anxious to try to teach Alice. She had read the reports about Helen Keller, that were just being published at that time, and was determined to use the same method of introducing Alice to water, as Annie Sullivan had used. This did not work. This extract, from the book "A Girl Like Alice", describes how a breakthrough was made:
"Brought up in the country she had been used to running about barefoot. Now, for reasons she could not understand, unseen hands persisted in pulling coverings over her feet and legs. Soft garments first, then hard uncomfortable objects which she resented. Cold weather might have made her more receptive to the idea but this was midsummer. Direct action was called for.
As fast as the hard and uncomfortable objects went on they came off. Again and again. The unseen hands proved equally persistent. Once the girl took the shoes and put them on the legs of a chair. It was a small indication that she could reason - shoes went on extremities - but something close to a standoff was developing.
Then one day the unseen hands took hers, placed it on the object and tapped a pattern on her hand. Repetition made the pattern recognisable. She began to concentrate as if working on some idea. Was it the link bet len Keller had, and it would be wonderful in this day and age, when we have so much more available to us, to retrace our steps to the methods of education used at that time.
A contemporary of Alice Betteridge, although some years younger, is Billy Sinclair who also attended the "Institution". Billy is a very interesting 81 year old member of the NSW Deafblind Association. He is an articulate man in both hand-over-hand fingerspelling and Braille. Billie is prelingually deaf and lost his sight at 8 years of age, he is well read and has travelled widely to 'see' the places he has read about. In 1988 the ABC made a film about Billie's early life and about his journey to Japan, called "The Journey". Billie has also travelled to countries such as China, Russia, UK, Brazil, India and Thailand, where he has viewed places of interest by touch and by having views described to him. He has returned to Sydney, describing his travels in detail, both one to one and by writing for the Deafblind monthly newsletter. Why are deafblind children not achieving this degree of literacy and education today? Where is education failing our young people? What was working then but is not working now? I believe that this is purely through lack of time and resources allocated to education of people who are deafblind. There are examples, here in Australia, where people who are congenitally deafblind are receiving an education e.g. a young man in Brisbane who is just completing his degree, having had one to one support, but the vast majority of people who are deafblind are denied even the most rudimentary, basic learning of communication. Rod MacDonald wrote in 1998 that, in the United States, "By 1967, eight deafblind people had graduated from American colleges and universities. In 1953, Robert Smithdas (now the Deputy Director of Helen Keller National Centre) became the first to earn a master's degree. Today, more than 100 deafblind Americans have earned college degrees, more than two dozen have earned master's degrees, and approximately six have earned doctorate degrees".
What can we do to change the situation here in Australia? As change it must! In a report to The Office of Disability, in their paper "Abuse and Adults with Intellectual Disability Living in Residential Services", Robert Conway, Louise Bergin and Kathryn Thornton, Special Education Centre University of Newcastle (p.26), quoted Sobsey (1994) "Emotional or developmental neglect occurs when an individual is deprived of basic human interaction required for the development of normal behaviour", and again (p.30), where they define this neglect as "the most insidious form of abuse". This is the abuse that is so prevalent with people who are deafblind, and, is a complete abrogation of their human rights. Communication and education is everyone's birthright.
Now to look at these rights and educational needs, through 3 primary areas of deafblindness, and address what is required for each group. There is an urgent need to address the human right of communication and education for people who are deafblind, instead of putting this into the 'too hard basket'. It is not only the initial need for communication teaching of people who are congenitally deafblind, although this is the most difficult and most urgent issue in order for the world to be transformed from sensation to sense, there is the need for ongoing education of people who are adventitiously deafblind. There are reports from people, who have tried to extend their education, indicating the frustration of trying to be 'heard' and in some cases the assistance gained which has helped in their achievements.
1. People born with deafblindness:
There are unique challenges for teaching young children about the world and how to relate to it. Once a child has grasped the concept of communication and does start to learn hand-over-hand signing or fingerspelling, there needs to be consistent one to one teaching to extend the knowledge, from the fact that things have names, into more abstract concepts. Lifelong educational opportunities are necessary to inform people of their choices in life and of the ever changing world.
At present, education can be provided for individuals, up to the age of 18 years, and early intervention is now addressing communication at an earlier age. However, the education provided is not always appropriate as support teachers may be trained in the areas of deafness or blindness, but not the combined loss. If a person has been labelled intellectually disabled, as a result of the lack of sensory input, there is often little attempt to teach literacy. There are no options for post-school provision of services, let alone ongoing education, so communication skills are frequently lost because of moves to group homes, nursing homes or other organisations, without skill and training for their staff in communication techniques. This is a most serious deficit in education where, even though there are habilitation courses available and some organisations are having their staff trained, training for individual differences such as deafblindness is not being addressed.
Sharon Barrey-Grassick, Educationist in W.A., in her paper "Rural and Urban Models of Service Provision to Students who are Deafblind", 1999, writes "The lack of trained teachers in this highly specialised field of deafblind education is indeed a huge issue when one considers the unique and very individual educational needs of students who are deafblind. Specific techniques and strategies are required for effective teaching and learning to take place, particularly in the critical areas of communication and language development. It is vitally important that all teaching staff and therapists involved with the student who is deafblind understand the implications of deafblindness upon learning".
There are many examples of this human rights abuse of people we have knowledge of, but unfortunately no funding to address the deprivation, e.g.
CS had little schooling before the age of thirteen, her parents preferring to keep her home where her mother could care for her. At thirteen they could not maintain the care because of her behavioural problems, (not of course seeing the behaviour as the only communication she knew) and she went to school full time. C very quickly learned 500 words in Braille and hand-over-hand signing, which she soaked up like a sponge and could cross reference, however, she was not given a concrete concept of what the words meant until she went into a work skills program at the age of 21 and this deficit was discovered. She was said to be profoundly intellectually disabled.
GH moved to a group home for people with intellectual disabilities, from school, he has not had any communication in the intervening 9 years. It has just been discovered that his signing and Braille had been very good when at school. Multiply these 2 situations by 10s of people in Sydney alone, and the abuse and denial of human rights is horrifying.
2. People who are born deaf and lose their vision later.
A significant number of this group of people have Usher's Syndrome type 1. Their schooling is often connected to the Deaf Education area. The world of people who are deaf is a very visual world and is significantly reduced, when vision deteriorates, frequently beginning in the teenage years. Often, because this is a gradual process of first losing peripheral vision, coming into a tunnel, then a pin point before losing sight altogether, the person compensates for quite a long time before accepting that vision is being lost. Many people have started tertiary studies, employment etc in areas where sight is essential.
CM trained as a cartographer and worked in that area for 10 years while she still had enough tunnel vision. At present C is studying literacy at TAFE, with an interpreter, in an effort to find further study that will accept her and with which she can make a life for herself. What opportunities are going to be open for her?
PM had more limited education, but wishes to extend this.
A recent plea from P is this email message; "W.E.A. in Newcastle were kind enough to give me my start. It was great at first because I had a personal interpreter. My class has a very dedicated co-ordinator and class teacher, who gave me a chance to learn again. The class is for deaf adult students plus me. It is a first.
Because of funding cuts the W.E.A. could no longer afford my interpreter. My teacher and her deaf aide try their best. I understand how hard it must be for them with each student (all deaf adult) working at different levels. I want to keep up in class, I am trying very hard, sometimes I get upset.
I want to learn and the W.E.A. are prepared to give me the chance. Do the funding people want to brush the deafblind under the table? We deserve a chance after all we are human beings too. Please! Can you help me get the funding for my interpreter? Even TAFE had to cut my time from 2 x 4 hours a week to 1 x 3 hours with my interpreter (PC IBM computer work). Because of funding cuts. As you can see people are prepared to help me BUT funding cuts could ruin my chances....
3. People who have a hearing impairment and lose their vision later.
Ushers Syndrome type 2 comes under this category. People with hearing impairment employ many strategies to compensate for their loss of hearing - lipreading, or reading the body language and facial expression are all strategies employed when hearing aids are not adequate to pick up all communication. When sight can no longer be used, as it becomes increasingly blurred and unreliable, the person loses confidence, self-esteem and, unlike the person who is part of the Deaf Community, there is no known service to assist. Employment, and previous education, has usually been reliant on sight, so the person loses their former identity. Education at this stage is essential, new methods of communication need to be taught. Written language, too, may need different methods of access -- Braille, large print, enlarging software. Audio cassettes or synthesised voice systems may need to be explored, often with the help of specific hearing devises, for the best result. The person needs to study and retrain for other employment as this it often occurs in the person's 20s.
SH was an electrical engineer with a major electricity distributor for 15 years before becoming adventitiously blind as a result of progressive Retinitis Pigmentosa complicated by Macula Oedema. He lost his job in 1996.
He undertook retraining in areas such as Braille, use of adaptive technology, long cane and guide dog mobility. Then in late 1997 he sought to upgrade his engineering degree by applying to do a research Masters degree in the area of hearing aids designed to improve the user's ability to orient themselves using sound cues (as opposed to the usual design criteria, which is only aimed at improving intelligibility).
He reports that; "In the interview we discussed my proposals and research that was being done in the field. It was suggested that the scope of my original proposal was too broad for a Masters and would need to be made more specific. The disappointing aspect of the interview was the systematic demolishing of the prospects of my completing the degree, by the interviewer. Several arguments were put. Firstly, it was suggested I would not be able to do hardware design because of my blindness. Secondly, it was suggested that software design would not be practical due to the complicated mathematics involved and you guessed it, my blindness. Thirdly, a literature search was suggested, but that would not be sufficient to warrant granting of a Masters degree. After some further discussion it was suggested that the type of investigation I was interested in would be better pursued in Psychology or Education."
S says the most disappointing aspect of this exercise was the lack of effort to accommodate his disability by at least investigating what adaptive technologies or methods could have been used to assist in reaching a workable solution. Instead, because they did not know how to approach the problem they put it in the "Too Hard Basket".
A more positive experience occurred in late 1998 when S had discussions with the faculty of Education at the University of Newcastle about attempting a Graduate Certificate in Adult and Community Education.
The course supervisor was comfortable in the knowledge that they would be able to accommodate his needs (even if it required some extra effort by the institution). This University has an Adaptive Technology Unit which provides translation of material into alternative formats. According to S they cannot always deliver exactly what you want when you want, but he believes it is the only University that has a formalized translation service.
SF is a man in his twenties, who, despite his failing sight has completed a law degree and was admitted as a solicitor to the Supreme Court of NSW in 1998. He has not been able to obtain work as a solicitor and has just started in his first paid legal position as tipstaff to Justice David Kirby. S relates problems he had a few years ago, in another State, where teaching staff refused to wear a microphone transmitter which relays to a hearing aid, so was denied access to information on the course subject. When this became public knowledge, there was an outcry and, the matter was rectified.
Education is a human right for everyone. At the Fourth Helen Keller World Conference, Stockholm 1989, a "Declaration of Basic Needs of Deafblind Persons"
was taken.
Article 4 stated that "Communication is the most formidable barrier faced by deafblind people. Communication is the key to learning, the acquisition of knowledge, and the access to others. Communication is imperative regardless of the potential level of achievement of the deafblind individual. This being the case, it is strongly urged that a high priority be placed on training deafblind individuals in effective communication methods. Native sign languages, manual alphabets, oral training, Braille and other technical aids and devices are all important avenues to effective communication that can be followed through the sense of touch. It is strongly urged, however, that deafblind individuals be offered training in several communication methods in order to provide the greatest flexibility in receptive and expressive communication".
Article 5 stated that "Every country of the world should provide specialised educational opportunities designed to meet the unique needs of deafblind people. Appropriate placement can often be found in programs designed for deaf children, blind children, deafblind children, or non-disabled children. However, each country should carefully evaluate which educational setting is most enabling for its deafblind children."
These are the most basic of rights and needs. Australia, and more particularly NSW, must address these educational rights of people who are deafblind, in order for them to take their rightful place within the community.
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