A Scottish Heritage
A History of Deafblindness in Scotland
“A man is isolated by everything which makes gaining information difficult and his isolation is reduced by everything which helps him gain knowledge”
Armitage (1886) (Language modified)
The project to develop a history of Deafblindness in Scotland was funded by The Heritage Lottery Fund. The task was to produce a historical account in a range of formats accessible to deafblind people. The aim is to enable deafblind people to learn about creating a history, to tell their own stories in their own way; to understand the part deafblind people and others have played in shaping deafblind history; and how legislation and other events have influenced happenings over the years. Accessing historical information about deafblindness particular to Scotland will also be of interest to professionals working in the field of deafblindness. Information is available in English on the website, as well as in braille, audio, moon and in BSL. Items of historical interest can be added to the website version as they becomes available. There is little historical information available in any one place about deafblindness itself, therefore I have used information from a range of sources to tell the story. The aim is that deafblind people and others may understand more about the lives of deafblind people, both in the more distant past generally, and in the last 30 years in Scotland
In terms of legislation, events, and developments I have created, as appendices, a range of chronologies showing how and when these occurred and factors which influenced how they developed.
The history of deafblindness, however, is mainly about people, about deafblind people themselves and how they overcame the huge challenges they faced. Also about individuals who championed their cause. Therefore we will begin with the stories of individuals.
Drena O’Malley MBE
The history of deafblindness is all about people, deafblind people, and others who helped them achieve their potential, their goals, their dreams. Throughout history there have been partnerships, between a deafblind person and a sighted hearing person, which enabled deafblind people to make an impact, in their local community, or on the wider world. This history looks particularly at the people and the situation in Scotland. However the world of deafblindness is indeed a small one, and therefore it is important to include deafblind people from other countries who helped to shape the deafblind world.
There is little doubt that Helen Keller is the deafblind person with whom most people are familiar and her story is known across the world. America Is the place where deafblind education was first developed. Helen’s story, together with that of her tutor, Anne Sullivan, inspired many across the world to take an interest in the communication methods which might be used with those who have a severe dual sensory loss.
However Helen had a number of forebears worthy of mention. And Scottish history is peppered with accounts of deaf and deafblind sign language users. In terms of deafness the first person in Scotland recorded as using sign language was Joan Stewart, Countess of Morton, who was born in 1428, the daughter of James 1st, King of Scotland, and known as the mute lady of Dalkeith.
David Gilbert Tate was reported by Dr Sam Hibbert in the Edinburgh Philosophical journal in 1819 “a lad born deaf and blind in the Shetland Isles” reportedly in 1794. Hibbert was on a study of rocks at the time when he was told of this young man in Fetlar. He described him as having an “idiotic” appearance, having no sight and unable to walk upright. The youngest of 10 children he was described as living in a hovel in one of the poorest parts of Shetland. His parents did not believe it was worthwhile to give him any kind of teaching. He moved along slowly on all fours and was badly stooped when Hibbert met him. He had little or no useful communication and spent his time by the fire moulding soft objects into different shapes.
James Mitchell (1795 – 1869) was the congenitally deafblind son of a Scottish minister who lived in the North of Scotland. His mother discovered soon after his birth that he did not turn to the light due to cataracts, and did not awaken to loud sounds. However, as he grew, he became very curious and used touch, smell, taste and gestures to interact with objects, people and the environment. He could often be seen riding around the surrounding farmland on horseback, going from farm to farm. When he arrived he would jump off and proceed to the kitchen where the farm mistress would provide a tasty snack. The fact that he was well known in the community was mainly due to his parents, and this worked very well for him. He was also known to have a passion for examining metal objects with his mouth, taking a particular pleasure in examining keys, which he hit against his teeth many times. His sense of smell was very strong and he often identified people in this way. He was also fascinated by light and would stare at any source of light for long periods of time.
James Wardrop 1812 letter to Dugald Stewart
Julia Brace (1807-1884) was the first deafblind child known to be in any kind of schooling in USA. She was recorded as using familial tactile sign language as a child after she became deafblind at age four due to typhus. As a young adult she attended The American School for the Deaf and quickly became proficient in tactile use of standard signs. However she was older and therefore at that time the cost of formal education could not be justified.
Little known to the general public is Laura Bridgman (1829-1889) who taught Deafblind manual to Ann Sullivan before she met Helen Keller. Laura’s family was stricken by Scarlet Fever in 1831 when Laura was barely two. Three of her siblings died and Laura was left deafblind with no sense of taste or smell. Doctor Samuel Howe, Director of Perkins Institute for the Blind wanted to try to educate Laura and in 1837 she went to Perkins school. She learned English using raised letters and the one handed manual alphabet. At age 10 she could write her own name and at 14 Anne Sullivan became her specialist tutor. It is interesting to note that Helen Keller’s famous tutor was indeed taught deafblind manual by Laura Bridgman.
Helen Keller was born in 1880, in Alabama, and enjoyed normal development until she was 19 months old when she became ill with a fever, thought perhaps to be Scarlet fever or Meningitis, which resulted in her becoming both blind and deaf. Alexander Graham Bell, well known as an activist in deaf education recommended Anne Sullivan from Perkins School for the Blind as the most appropriate person to try to establish communication with this very young girl. Helen Keller’s mother read about Laura in Charles Dickens’ “American Notes”. Dickens’ written account of meeting Laura on his US trip ensured Laura was known world-wide. Thus Anne Sullivan’s place in the lives of these two deafblind people, and in history, was secured. The world of deafblindness is small, and in this case it worked well for both Laura Bridgman and Helen Keller.
Anne worked with Helen to establish a connection between fingerspelling and objects; fingerspelling and activities; fingerspelling and English words. At this stage Helen’s behaviour demonstrated great frustration with all around her and in the end Anne and Helen moved into a small cottage on the family’s estate in order to work on general behaviour as well as communication. This brought results and a short time later when at the family water pump, Helen associated water running onto her hand with the fingerspelt word. Within hours Helen learned the fingerspelling of 30 words and the objects associated with them. Helen made many trips to Perkins school learning Braille and then French, Latin and German phrases. At this point she was also learning to speak having felt the position of tongue and lips on other people when they were speaking.
She went on to attend Radcliffe College, the women’s branch of Harvard, and graduated with a Bachelor’s degree in English and German. Helen enjoyed a 50 year writing career, travelling widely to promote her many books, which included “The story of my life” (1903) which was translated into 50 languages, “Helen Keller in Scotland” (1933) “Helen Keller’s journal” (1938). In her travels she was accompanied until 1922 by her trusty companion Anne Sullivan, until her retirement that year. Helen then ventured into film with “Helen Keller and her story” winning an Oscar in 1957 and the play “The Miracle Worker” won the Pulitzer prize in 1960.
In the 19th century Laura Bridgeman and Helen Keller established the principle that a fully deafblind child was able to be educated and this principle was to prove a critical factor in the education of deafblind people for many years to come.
A very important part of Helen Keller’s influence on Scotland’s deafblind people was that the well-travelled Helen came on more than one visit to Glasgow between 1932 and 1955 visiting, among other educational establishments, St Vincent’s School for the Deaf and Blind. On her visit to the school she said:
“You and I know that we are not deaf if we hear with our hearts. Our minds have their own eyes and ears, and if we think right and feel right, we can plant flowers of contentment and happiness among the nooks and crannies of our limitations.
We are deaf only if we fail to find beauty and goodness in the world. But if we love the sun and the stars, the birds and flowers, try every day to something kind for someone, there will be joy for us on the mountains and gladness in the fields; and in our lives there will be a sweetness that will overflow into the lives of others. These are the things that make everything in life beautiful. Far away in the days to come is our goal. We may not reach it, but we can look up and see its’ beauty, believe in it and follow where it leads.”
Evelyn Brown ‘Inspirational People’
Helen died on 1st June 1968 and was buried alongside Anne Sullivan in National Cathedral in Washington DC
Arthur Sculthorpe (1904 – 1974)
Arthur became deafblind in 1938 aged 34 and faced many years as a disabled person. He was however determined to live as normal a life as possible. Using block capital letters printed on his palm as a direct means of communication with the man in the street he soon became a familiar and accepted figure in his home town of Peterborough. He trained three dogs to guide him, all named Sparke
By good fortune he was put in touch with the founder members of the National Deaf-Blind Helpers League in Birmingham. In 1928 a small group of deafblind people and their friends had founded the National Deaf-Blind Helpers League (NDBHL). Arthur devoted all his energies to working with deafblind people seeking constructively to help them help themselves. He became editor of their magazine “The Rainbow”. He captured the imagination of people from all walks of life from the moment he made a radio broadcast in June 1948 appealing for funds for the League. He was the natural choice by Deaf-blind people in 1950 as the next General Secretary of the League when the headquarters moved to Peterborough. He helped deafblind people create a better life for themselves, and worked tirelessly to influence statutory bodies and local authorities so that they might better understand the problems people faced when they became deafblind. He was awarded the MBE in the Coronation Honours in June 1953. He represented the United Kingdom as a member of the World Council for the Welfare of the Blind Deaf-Blind Committee, at their first historic meeting held in New York in June 1957. During this visit he appreciated the message of encouragement printed on his hand by President Eisenhower “Carry on the good work – Ike”
It was his dream to pioneer the building of self-contained flats for Deaf-Blind people, to prove that they could live independent lives. Funds rolled in from the moment he broadcast an appeal in 1961. Thus Rainbow Court became a reality in 1963. He received numerous awards for his work with deafblind committee members. He had a private audience with the pope in 1967 communicating with him using the Block Alphabet.
He kept in close touch with fellow Deaf-Blind people, always ready to listen, advise and encourage them to work towards a fuller life for themselves
He had the happy gift of putting people at their ease, so that it was not long before all contacts forgot the unusual way of communicating and were in deep conversation with him.
He emphasised the pressing need for Deaf-blind people to have a personal friend, a volunteer to simply keep them in touch with everyday life
Gill Morbey and Sense
In the 1950s ten families came together to fight for their children who had congenital Rubella syndrome. Soon they began to campaign for help. In the 60s the Rubella epidemic continued and a growing band of families was affected. The National Deafblind and Rubella Association was formed. In 1965 Jessica Hills became the chairperson and remained so for a number of years. As Rubella Immunisation began epidemics became a thing of the past but the challenges for deafblind people and their families remained ever-present. Their campaign was for the education authorities to recognise the special needs of deafblind children.
In 1985 Sense Scotland formalised as a charity and appointed its first staff member, Gill Morbey. A year later the office and a charity shop were opened in Glasgow. And In 1987 The Overbridge Continuing Education Centre opened in Glasgow and Sense’s income topped £1m for the first time. In 1989 Children in need awarded Sense Scotland £300,000 for a new Family Resource. In the same year The Princess Royal became Sense’s patron.
In the 90s the government started a programme of closing long-stay hospitals as a result of Care in the Community and Sense began to provide more housing for the people discharged from long-stay hospitals. By 1999 Sense had 73 group homes across the UK providing supported housing and further education to 314 deafblind people. The Glasgow family Resource Centre opened in 1991. In 1999 Sense Scotland and Deafblind Scotland mounted a joint Yes to Access campaign when they lobbied the Scottish Parliament soon after it opened. This campaign heralded the issuing of Section 7 Guidance in England and Wales. However despite a long hard effort by both organisations to achieve a similar effective piece of guidance in Scotland, this failed to materialise.
In 2010 Gill Morbey was awarded an OBE. She continued as CE of Sense Scotland until 2015 when she became CE of Sense UK. In 2015 Sense celebrated its 60th anniversary by launching the “We all need Friends” campaign.
Dorrie Moore (1922-2004)
Dorrie was born on 31st January 1922 in Essex, and described herself as an Essex girl long before that term assumed a modern meaning. She loved Southend-on-Sea and, after moving to Scotland, regularly returned there for holidays with her husband John. She used both British Sign Language and Deafblind Manual to communicate with John and others. Dorrie had two children who communicated with their Mum by pulling her skirt, two pulls for someone at the door, three pulls for someone wanting to speak to her, and lots of rapid pulls for an emergency! Dorrie became a member of the National Deaf-Blind Helpers League and then became the Divisional Secretary for Scotland for 10 years. She spoke widely at conferences, training opportunities and DBUK rallies and conventions. Every few years a Deafblind Convention was held which was attended by people from all over the world – there was one held in Edinburgh in 1990 – and this enabled Dorrie and others to make friends from across the world. She regularly represented Scotland at DBUK, national, and international meetings. Dorrie trained thousands of nurses to use deafblind manual in her time as Divisional Secretary, particularly in West of Scotland, and part of her legacy is the improvement in communication with nursing staff which deafblind people experienced during the last 20 years.
On a more local basis she was secretary of the Rainbow Club which met on Monday nights with deafblind people being picked up by bus from different areas in Glasgow and dropped off at borrowed premises in George’s Cross where they could enjoy communicating with each other using a whole range of communication methods. Dorrie was also involved in a deafblind club started on a Friday in St Vincent’s Centre for the Deaf. This was run by Social Work department and was a wonderful place for social workers to learn about deafblindness. Trainee social workers from all over Glasgow came to volunteer for an hour and learnt a great deal.
She could smell newly mown grass from hundreds of yards away. And she could identify people some distance away simply by their perfume or after shave.
When the Archdiocese and the Daughters of Charity of St Vincent De Paul succeeded in creating a housing complex in Glasgow which was specially adapted for deaf and deafblind people, one of Dorrie’s dreams came true. On its completion in 1989 she and John moved there. Dorrie was the campaigner behind the appointment of a Scottish Liaison Officer who could better support Scottish deafblind people. Soon after the Barrowfield Deafblind Complex opened in April 1989 a part-time post was advertised and her efforts were rewarded when Drena O’Malley was employed, two days per week in September 1989. Dorrie had worked hard to bring about these advances. As a fully deafblind lady for more than 30 years and secretary of the Rainbow Club she was a leading light in taking forwards the needs of deafblind people. Dorrie never missed an opportunity to promote deafblindness and was delighted to meet prominent figures, to use deafblind manual with them, and to introduce them to deafblindness. In a similar vein to Arthur Sculthorpe, as Divi Sec she met Archbishop ??? HRH Princess Anne, and Pope ??? They were won over by her ready smile, and her sense of humour.
Drena O’Malley and Deafblind Scotland
I replied to an advertisement for a part-time Liaison Officer with National Deaf-blind in July 1989. I had been working with groups of parents and children in one of Glasgow’s most deprived areas to achieve both the parents’ individual goals and a larger group goal of permanent accommodation. And we were making progress. However when I saw the advert for the Liaison Officer role with deafblind people I thought my skills might fit well with deafblind people. I had just started a part-time degree at Stirling University so part-time suited. My interest in communication was long-standing following my father suffering a severe stroke at 62. Amongst other things he lost the power of speech, a huge frustration to him for the rest of his life. So my interest in communication was and remains personal.
When I met Dorrie and Richard James from Head Office at the interview I was fascinated by the flowing tactile communication between them, and I was hooked. Dorrie taught me Deafblind Manual that day, we shared jokes and I started work a few weeks later. My new office was the sleepover room for the staff working in the Barrowfield Deafblind Complex which was perhaps a step up from a leaky hut in Royston Primary School
Richard James, and the then Chief Executive of NDBHL, Ann Barnett, proved to be inspirational to work for. Richard believed that anyone could be prime minister, if they had enough appropriate support. And deafblind people didn’t achieve their ambitions simply because they didn’t have the appropriate support needed to do it.
Both of them were hands-on people who wanted the lives of Scottish deafblind people to improve. And both of them were committed to Dorrie, in spite of all her demands. I quickly became her number three supporter.
Dorrie had ambitions, that the general public should know about deafblindness, should know how to communicate with deafblind people, she wanted deafblind people to have guides like they did in Scandinavia, to be able to meet, regularly, to socialise with each other, to socialise with sighted hearing people. She wanted deafblind people to have a fuller life. And she wanted to speak for herself, to tell her story in her own words. She was really keen that deafblind people should speak for themselves at every opportunity
I quickly learnt that the only way others will hear deafblind people is if sighted hearing people are quiet, and make a conscious decision not to speak for them. It would have been easier as speaking opportunities presented for me to go along on my own. But I rarely gave in to that temptation. Dorrie was delighted with this modus operandum. I sought opportunities where she could inform others about the best way to communicate with deafblind people and how to help them. She became a sought-after speaker on her favourite subject. And people remembered her long after she had spoken to them.
However there was another side to Dorrie. Her great fear was loneliness. She did not want to be alone, and she wanted to have communication all the time. She was very dependent on her husband John, who did try to provide as much communication support as possible. I came to understand that unless someone was using deafblind manual with her nothing existed outside of herself.
She knew and talked about the fact that her mental health was fragile, that deafblindness caused her to be unsure of things, caused her to constantly check and recheck on who was in the room, who had left the room, what people’s reactions to her had been. She greatly valued people’s good opinion of her and was adversely affected by a lack of response from people. She said she felt when she became deafblind she somehow began to disappear, that people began to speak about her, rather than to her, and this made her fearful. She mostly appeared happy and laughing in public, unless it was a day when her fears had overtaken her, and then her fearfulness would be apparent.
Dorrie once described her life to me as like living in a cupboard, where people opened the door, and communicated with her in deafblind manual. Then the communication stopped. The door closed again and she didn’t know if the individual had left the room, the building, or the world. She was rarely sure exactly who had been communicating with her, particularly if they were unknown to her. She relied on individuals always using the same perfume, the same style of delivery, familiar patterns of fingerspelling to be sure of their identity, and even then she wasn’t sure.
She was also dedicated to ensuring that nurses learned deafblind manual, as deafblind people in a medical setting were particularly vulnerable, and could be put at risk by lack of communication. With the help of the Sisters and myself. Dorrie, over a few years, taught thousands of nurses and other professionals deafblind manual. The gain for these professionals was really in meeting and listening to Dorrie talk about her life, her fears, and her hopes.
Due to a number of factors, including being a resident in the Deafblind Complex, and physically close to me, Dorrie was supported in this work, and in everyday life by a number of very able volunteers and paid staff. I was very aware this was not the case for the vast majority of deafblind people in Scotland. I quickly concluded that there had to be another way to enable more deafblind people to live fuller lives and to feel useful.
When I started in 1989 there were 66 members in Scotland whom I tried to visit on a regular basis, gathering information on their problems, needs, and desires, as well as those of their families. This number steadily grew each year and it became clear that NDBL’s idea to establish the Liaison Officer role in Scotland, far from meeting needs, had created a record of needs way beyond the capability of one person to meet.
In September 1991 National Deaf-Blind League held a week-long International Deaf-blind convention in Cramond near Edinburgh. The programme included talks, lectures, workshops and visits to places of interest, as well as helicopter rides, skiing, a ceilidh and all things Scottish. Over 120 people including 50 deafblind people and their guides came from all over the world to enjoy each other’s company for a week, to learn and to experience. I met deafblind people from all over the world lots of whom enjoyed a guide/communicator service
on a regular basis. And it was then I became convicted of the need to have a professional guide/communicator service in Scotland. And I became convicted of the positive influence it would have on the lives of deafblind people in Scotland.
Father Cyril Axelrod
He was born on 24th February 1942 in South Africa to Jewish parents. Hs grandfather was a rabbi. They spoke Yiddish and had little knowledge of English. He was a gentle, quiet baby, who was slow to walk, possibly due to balance problems. His deafness was diagnosed at three years of age which was a body blow to his parents who resolved to find the best possible education for him There was no suitable Jewish school for the deaf and after much deliberation his parents reluctantly agreed Cyril should attend St Vincent’s School for the Deaf in Johannesburg. The parents were delighted when, in time, the school agreed to ensure their son learned about the “God of Israel” at school. “At that time parents were not encouraged to use sign language with their deaf children, as lipreading and speech were the preferred methods As an adult, my pastoral work would teach me how much some deaf people have suffered as a result of this.”
As he grew into a young man he was drawn more and more to the Catholic faith, and finally in 1970 he was ordained as a priest, in Johannesburg. His Jewish family could not accept his becoming a priest and he had little contact with them for several years. He committed his life to serving deaf people and over the years he did this in South Africa, in America, in South East Asia and in Europe. Father Cyril began his ministry in South Africa with deaf and deafblind people using over eight indigenous sign languages. Defying apartheid, he established a multi-racial school for deaf children in Soweto, a hostel for deaf homeless people in Pretoria, and an employment centre in Cape Town. He helped to have schools, community centres, and homes built for deaf people as well as seeking to educate them, across the world,
In 1980 he went to USA visiting 27 states, and during this visit he went to see an Opthalmologist who confirmed that he had Retinitis Pigmentosa and was going to lose his sight due to a condition called Usher Syndrome. He knew at that point he would become deafblind, that the time when he could do God’s work was incredibly limited and that he must therefore get on with it. He wanted to work with deaf people in South East Asia and finally he made arrangements to spend time in Macau where there were no services for deaf people. He spent time with Buddhist monks there and made a strong relationship with them. Father Cyril could see more similarities than differences between the main religions, and that they could gain by learning from one another.
His 12 years in Macau were hugely productive and resulted in his being awarded a First Class Individual Social Medal for work in the human rights of deaf people. However by this time his “visual field amounted to only 3%, he had no sight at all in the dark. He had a whitish fog over both eyes like veils and his 3 dimensional vision was distorted” This loss of his sight caused him to come to the UK in 2000 where, in his book “And the Journey Begins” he describes how he experienced periods of anger, depression and disbelief as he fought with the feeling that “God had brought me to an unfamiliar country where everything is completely new to me. Now I was seen only as a deafblind man.”
He found that even although he was using hands-on some deaf people in England seemed to withdraw from me when I couldn’t see sign. Father Cyril said “I felt I was leaving my community, as I became not deaf, but deafblind”
At this low point in a life totally devoted to service Father Cyril was asked by Deafblind UK to be their Pastoral Support Development Co-ordinator to encourage pastoral care for deafblind people within churches. And then he
received news that Gallaudet University had awarded him an honorary doctorate. This recognition could not have come at a better time as “ it restored my belief that nothing could take my life’s work away from me” On the day the award was presented he was overwhelmed by the experience of a standing ovation from the Gallaudet university audience and felt uplifted on his journey back to England that his work now was to serve deafblind people.
Since Father Cyril lost his sight he has with new vigour sought to “help others see that, with the right assistance, deafblind people can take control of their own loves, their own decisions, and their own roles.” Also to help sighted hearing people see that “the really rewarding challenge is to see how a deafblind person can, with assistance, fulfil their own hopes and aspirations, and make their own decisions, at a deeper level of independence”
Father Cyril is a regular visitor to Scotland, who always finds time to meet with deafblind people, to train staff, and give pastoral assistance where needed. In July 2006 he spoke at Deafblind Scotland’s annual Forum on Deafblindness about his journey to becoming a deafblind person.
Apart from a number of international awards, Father Cyril has been privileged to meet three popes and in 2014 received an OBE from the Queen for services to disabled people. He speaks nine languages as well as numerous sign languages and tactile sign languages.
Danny was born in Louisiana, USA, in 1962, was deaf from birth, and describes himself as Cajun. He began to lose sight in his teens, a slow gradual process due to Retinitis Pigmentosa. Danny has Usher Syndrome. There is a high incidence of Usher Syndrome among the Cajun population. He attended a state school for the deaf from age five to twenty. His first job was washing tables in Macdonalds. After five years he was promoted to fry cook. He then went to a trade school where he learned accounting. He needed an interpreter to study there and in the end his Mum interpreted for him. This led to a job for three years in a warehouse which provided food to offshore workers. However after that he was laid off, and remained unemployed for two years. Danny’s Cajun tenacity then came to the fore when a friend suggested he move to Seattle where facilities for deafblind people were very good. So he did.
However the streets of Seattle were not paved with gold, when he found he couldn’t get a job. One of the businesses he applied to was Boeing who suggested he attend a course at a local college, Whilst there he really enjoyed the food and found out it was made by culinary students. At this point he decided to change his major and enrolled in a culinary arts course. He was awarded 6 scholarships so he could afford to use an interpreter, and he immediately attended an internship with a famous Cajun cook. He also undertook a course in research and used this to interview restaurant owners, gaining valuable information about running a restaurant. After graduation however he watched as hearing students were offered jobs, but he wasn’t. He could only get jobs washing dishes. He decided to set up his own business and took out a bank loan to do so, which took him six years to repay.
He started his own restaurant Rajin Cajun, and employed – against all advice – three deaf employees together with three hearing employees who could sign
Danny came to Scotland in June 1999 to speak at Deafblind UK Scottish Office’s 8th annual Forum on Deafblindness. Danny then spent the weekend speaking at the first ever Scottish Conference on Usher Syndrome, held at Dudhope Castle, Universtiy of Abertay. He spoke about his Rajin Cajun restaurant and the success it had become, after 9 years. How financially it had worked out even though he had not always taken on board the professional advice he had been given. He also spoke about the constant adaptations he had needed to make to his communication. When he spoke at the Usher conference he could still see enough to look at an interpreter carefully placed straight ahead of him. He was inspirational to the forty people with Usher Syndrome who had the opportunity to meet him over the weekend.
Danny received a number of awards including the President’s Award for Outstanding Small Employer of the year. He met President Clinton when he visited his restaurant to sample Danny’s Cajun cooking. He is now an internationally acclaimed inspirational speaker as well as vice president of Washington State Deaf Blind Citizens, and a board member of other organisations.
The Guide/communicator Service
The “Breaking Through” Report by the Deafblind Services Liaison Group 1988 made many recommendations regarding services for deafblind people. The report stated that – “Life for a deafblind person is significantly enriched if a guide/communicator service is available”
Drena O’Malley, started her new role as NDBL Liaison Officer in 1989 just after this ground-breaking report was published. and in a very short time began to campaign, with the help of deafblind people, for a guide/communicator service in Scotland similar to that available in Scandinavian countries. In April 1990 NDBL held a training course in Communication with Deaf-blind persons over 6 evenings in Norfolk Street. Tutors included Richard James, June Brooks, Drena O’Malley, Dottie Entwhistle (Deaf-blind) and Patrick Murphy (Deaf-blind), A CACDP assessment could be undertaken for £10. Almost 50 people took part.
In June 1990 “The Way Ahead” Seminar was held in Central Hotel Glasgow. MA Henman-Barrow spoke as chairperson of NDBL, Patrick Murphy spoke as representative of European Federation of the Blind. Professor Fred Edwards spoke on “Breaking Through”. Gill Morbey, Bob Winter, and Drena O’Malley spoke on the services needed, and those provided. There was a discussion with a panel of four on “The Way ahead” Forty deafblind people attended.
In September 1991 NDBL Peterborough hosted an international convention in Edinburgh in which more than 100 deafblind people and their guides took part. There were speakers from all over the world.
In June 1992 NDBL Scotland hosted their first Forum which 100 councillors, professionals, and MPs attended. Donald Dewar, Shadow Secretary of State was the lead speaker. The Forum became an annual event for the next 14?? Years. A Chronology of the themes, topics and speakers is available in the Chronologies section.
The launching of the “Breaking Through” Report together with all this activity in the three years 1989 – 92 NDBL ensured that NDBL and deafblindness enjoyed a greatly increased profile in Scotland during this period, There is little doubt this had a positive impact on the quest to get a guide/communicator service started in Scotland.
In the same time period a review of service to deafblind people was published by Strathclyde Regional Council, compiled by Alex McPherson, Co-ordinator Services for the Deaf. This followed a similar review on services for Deaf people. The Review recommended that “for those deaf-blind people living in the community, a guide-help or guide-interpreter scheme could dramatically improve the quality of life. A few hours a week from a guide-help can allow the deaf-blind person to integrate in normal activities such as shopping, swimming, visiting friends, placing a bet or going to the pub. This can have a very positive effect as has been witnessed…..A guide-help scheme would be a very effective use of resources.”
During the next few years an ongoing discussion took place between NDBL and Strathclyde Region in an effort to get a pilot guide/communicator scheme off the ground. In November 1992 NDBL Peterborough agreed in principle that The League in Scotland could take on a contract to provide a small guide/communicator service. In 1993 120 members were asked how they might use a guide/communicator service. During 1993 consideration was given to piloting a service using existing home-helps, and training was given to home-helps already working with deaf-blind people. Giving further training to BSL interpreters and enabling them to fulfil the guide/communicator role was also considered, but found to be impractical. In 1994 in-depth discussions took place on training and using specialist guide/communicators to provide a small service within Strathclyde Region. In December 1994 Drena O’Malley and Ann Davis agreed ground rules for such a service. During February and March 1995 Service Level agreement was discussed at length and agreed between Alex McPherson SRC and Drena O’Malley NDBL Scotland.
Potential guide/communicators were interviewed in April 1995, £5000 funding was received to enable training and in May 1995 the service was implemented using three guides, John Frame, Jim Tracy and Janet Gilroy. The Service agreement was to provide approximately 10 hours of service each week to 7 deafblind people in the Strathclyde Region. The agreement required the guide/communicators used to be qualified in CACDP Communication and Guiding Skills with deafblind people and BSL Level 2. It also required guide/communicators to have a job description, and to abide by the Code of Ethics used by Strathclyde Region’s BSL Interpreters.
In 1995 the National Deaf-Blind League Scottish Office received funding for 3 years from the Scottish Office Home and Health Department Section (10) 1 to promote the development of a guide/communicator service across Scotland. And slowly but surely Local Authorities and Health Boards began to recognize that the guide/communicator service is vital to deafblind people’s wellbeing.
In 1998 the MEL (1998)4 was issued by the Department of Health requiring All Health Boards and NHS Trusts to be aware of their responsibilities in this area and having arrangements in place to ensure that deafblind people are afforded the services of a guide/communicator when they attend hospital or GP surgery.
In 1998 The Final Report on the Scottish Office Project reported that the guide/communicator service did change the lives of deafblind people; that
the role of the Guide/communicator is a specialized one and should be recognized as such; that the service must be fully resourced to be effective;
that professional standards should be developed; that research was urgently needed to identify the most cost-effective, user-centred ways of providing a Guide/communicator service; that deafblindness needs to be better-known to local authorities so that they may be convinced of the need to provide a service
In 1999 at the Usher Syndrome Conference in Abertay University Ove Bejsnap from Denmark spoke about services in Scandinavia. In Denmark it is a legal requirement that deafblind people have the services of a Contact Person, up to twenty hours per week. At the same conference Drena O’Malley reported that, in Norway, a guide/communicator service is a civil right for deafblind people. Up to 500 hours per year is allowed. In Finland deafblind people can expect to receive up to 240 hours per year. These are government guidelines.
The conference noted that we were still a long way from deafblind people’s dream of a guide/communicator being available to them in the same way a BSL interpreter is available to a Deaf person, free of charge at the point of use.
In 2005 Deafblind Scotland published a report named “Decade of Delay” with 50 deafblind people and their guides hand-delivering it in person to the Scottish Parliament on 9th March 2005. This records the progress made in the provision of a specialist service to deafblind people, and also records the issues remaining to be addressed. The Guidance implemented by the Scottish Government as a result of that 2005 campaign fell short of Section 7 guidance in England and much remains to be done to achieve any kind of parity with Scandinavian countries.
Deafblind Studies Diploma
As the Guide/communicator service developed and the guides acquired qualifications in communication and language skills it became apparent that the range of qualifications in deafblindness was lacking.
In 1997 at a meeting of the Deafblind Services Liaison Group Roy Lawrenson, GDBA Schools was asked to invite interested parties to a workshop on developing training/a course in deafblindness. It was initially suggested that this could possibly form part of GDBA Rehabilitation course. Jackie Scott CE DBUK nominated D O’Malley as DBUK rep for initial meetings. Others invited were Bob Peckford CACDP, Liz Booth, Sense, Virginia Von Malakowsky, Sense, Norman Brown, Sense, Alison Bennett. Sense, Graham Hicks. Sense, Mary Guest Guest Sense, Julie Brown DBUK, Simon Eamonson GDBA, Tom Muldowney, GDBA, Alan Sloman, GDBA.
In October 1997 the meeting finally took place when a group of sensory impairment organisations including GDBA, DBUK Scottish Office, Sense and CACDP, met in Hyndland, Surrey to discuss the need for a specialist qualification in Deafblindness.
The main items to be discussed at a meeting were (1) the viability of a deafblind module, (2) the content of the module, (3) the putting together of a project team. At that meeting it was agreed that a professional qualification was needed, containing various modules. Just adding a module to the GDBA Rehab course would not meet the need. Over the next five years slowly, tortuously, surely, modules were developed, improved, and added to by a group of experts in the field who gave their time voluntarily to develop a course. From the beginning it was agreed that the course would cover the needs of both congenital and acquired deafblindness. It was a long and tortuous road with many delays on the way. The Universities of Edinburgh, Birmingham, and finally the Open University were involved in validating the course over the years. In 2002 the efforts of that initial group were rewarded when tranche 1 of a new diploma in Deafblind Studies was launched. This was a two year diploma course with a certificate awarded on successful completion of the first year of the course. The course, its content, and its effectiveness were continually monitored and every year one topic was updated. Since 2002 dozens of students from all over UK and abroad have achieved this specialist diploma bringing a new professionalism to workers in the field of deafblindness.
In the same time period other organisations, including Signature (formerly known as CACDP) were busily developing qualifications in British Sign Language, Deafblind Manual Interpreting, Communication and Guiding Skills with Deafblind people, and interpreting in both BSL and Deafblind Manual. There was now a qualifications framework for those working in the field of deafblindness, albeit with costs involved, which had to be met.
The Diploma has continued to change and adapt to the needs of the professions both in terms of the shape of the course and in terms of delivery, and therein has lain its strength.