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Dr Philip Gafga, Consultant on Deafblindness

Deafblind Awareness Week (23 - 29 June)

In today's world, we frequently hear about awareness months, weeks or days that strive to shine the spotlight on social concerns, medical conditions and disability issues. The main objective of these campaigns is to promote greater awareness among the public and giving clear signposts for action in terms of how society can change attitudes and realign perceptions in a more positive light.

One of the things that people might think about is what it might be like to lose either sight or hearing and how it would affect them. Maybe, they may have a friend or a relation who is blind or deaf and may be able to relate to those experiences. On a different plane of thought, it is probable even fewer people will have thought what it must mean to lose both sight and hearing and the word 'deafblind' may not even enter the lexicon. Most would dismiss it as totally implausible and let the thought perish in a fleeting moment.

It has been said that deafblindness was one of the last disabilities to emerge from the closet. In the distant past, deafblind people were mostly hidden away from the community with families and friends gathering in small groups to offer each other mutual support. A more progressive disability rights agenda and demographic changes arising from an ageing population may see deafblindness entering the mainstream of public consciousness. According to a CeDR report commissioned by Sense in 2010, there are an estimated 250,000 people in the UK who are deafblind, of which about 222,000 are aged over 70, about 33,000 are adults aged 20-69, and about 4,000 are children aged 0-19 years.

The figures just quoted indicate that ageing counts as the biggest factor in the onset of deafblindness and it does not take much conjecture to work out the possible incidence of deafblindness arising from an ageing population as the ONS 2012 Statistical Bulletin on National Population Projections is forecasting an increase in the UK population from 63.7 million in mid-2012 to 73.3 million by mid-2037 - an increase of 9.6 per cent over 25 years. In the section on Changing Age Structure, the population aged 75 and over is projected to rise from 5.0 million in 2012 to 9.5 million in 2037. The proportion of older people relative to the whole population is expected to rise from approximately 7.8 per cent in 2012 to 13 per cent in 2037.

The onset of deafblindness does vary, ranging from congenital deafblindness (from birth), paediatric deafblindness (from childhood) and acquired deafblindness (from adulthood). The stage of life at which there is significant combined sight and hearing loss is a determining factor in how the person and his/her family respond. In congenital and paediatric deafblindness, there will need to be a strategy for specialist education provision and support services. In acquired deafblindness, new living skills would need to be acquired, new lines of support accessed and peer support groups can offer encouragement and support. Despite the challenges of overcoming significant hearing-sight loss, deafblind people can lead fulfilling lives if they are given access to all the support services for their daily living needs.

Deafblind Awareness Week in 2014 is from Monday 23 to Sunday 29 June. It has its origins in the US when it holds the Helen Keller Deaf-Blind (sic) Awareness Week timed to coincide with Helen Keller's birthday on 27 June. In 1984, President Ronald Reagan issued a Presidential Proclamation declaring the last week of June as Helen Keller Deaf-Blind Awareness Week. In the UK, Deafblind Awareness Week is observed in the same week by charities for deafblind people, Sense and Deafblind UK, and is used as a platform to promote awareness of deafblindness and celebrate the achievements of deafblind people and salute the work of volunteers and professionals who have gone the extra mile to help deafblind people. Later on, we will be looking at some noteworthy deafblind people as a celebration of their achievements and illustrating their different backgrounds where deafblindness began at various points in life.

The US Presidential Proclamation starts with the following words: 'Our eyes and ears provide vital ways of interacting with the world around us.' Sight and hearing are the two distance senses that are important for how people interact with the world around them. When you take a walk from your house to the shops, you are using your sight and hearing to orientate yourself within the locality and avoid potential hazards. On the way, you may meet a friend and stop to have a chat, again using both sight and hearing. In the shops, you will be walking along aisles, looking at products and prices, and making your purchases; again using your sight and hearing. This is all summed up in three things:

Losing either sight OR hearing can have far reaching consequences for daily living skills. Hearing loss may mean that you are relying more on your sight by employing new communication skills such as lipreading or relying on sign language. Sight loss will mean greater reliance on hearing if you want to access information through audio materials or using background noise to help orientate yourself in your surroundings. In either case, the remaining distance sense is used as the compensating sense as part of a coping strategy.

Now imagine losing BOTH sight and hearing. How are you going to cope if you don't have the two vitally important distance senses? What sort of coping strategy would you use? Well-meaning advice may be offered to you, such as 'how about talking books' or 'how about using subtitles for TV programmes' or 'how about using a minicom for telephone calls'? There is not a snowball in hell's chance that these will work! The bottom line is that combined hearing and sight loss creates a whole new dimension of problems that present awesome challenges and a totally new mind-set for creating a completely different coping framework for daily living to overcome deafblindness.

The first problem is to do with mobility. Even if the deafblind person is totally familiar with the locality, hazard perception may mean problems at road crossings or overcrowded streets with proliferations of A-boards and cafe tables may present navigational nightmares for those relying on long canes. Deafblind people sometimes use red and white long canes to denote their status as deafblind, and mention is given to these red and white canes in the Highway Code (Rule 207). Deafblind people may use guide dogs that wear red and white chequered harnesses whilst working, and help offer some added degree of independence within the confines of a familiar locality. The most important aid to mobility is the services of a communicator-guide who acts as the 'eyes and ears' of deafblind people. One role of the communicator-guide is to ensure safe mobility, particularly at road crossings, and helping navigation and orientation in unfamiliar surroundings.

Communicator-guides can complement working guide dogs as outlined in the guidance notes issued jointly by Guide Dogs and Deafblind Enablement (opens a PDF document).

The second problem involves communication. There are some anecdotes from deafblind people recounting their communication experiences. People would sometimes come up to a deafblind person and start speaking to them, only to find no response and walk off quite indignantly because the deafblind person 'appeared to be ignoring them'! Some deafblind people may have enough residual hearing to carry on a conversation, but only in a controlled environment. This would involve speaking clearly and making sure there is no excessive background noise that would make it difficult to understand clear speech.

For those who are severely or profoundly deaf, there will be a need to rely exclusively on tactile communication methods. The deafblind block alphabet can be a useful first step for establishing tactile communication with a deafblind person. A video demonstration of the block alphabet from Deafblind Enablement can be found on YouTube and a printable version of the block alphabet can be downloaded. The British Sign Language alphabet has been adapted to present a version suitable for tactile communication with deafblind people, known as the deafblind manual alphabet, or perhaps more clearly, as the deafblind fingerspelling alphabet. There is a Deafblind Enablement video of a deafblind person teaching a hearing-sighted person the deafblind fingerspelling alphabet on YouTube and a printable version of the deafblind fingerspelling alphabet can be downloaded. Deaf people who used BSL earlier on before becoming deafblind may use alternative methods such as hands-on signing or visual frame signing. These alternative deafblind communication methods are summarised on the Sense website.

One of the important roles for communicator-guides is to assist with communication for deafblind people. Communicator-guides undergo specialist training which may encompass basic communication techniques with deafblind people, ranging from clear speech in controlled environments, block alphabet, and deafblind fingerspelling. More advanced communication methods may be available depending on the communicator-guide's qualifications, and for more formal settings such as medical appointments or meetings, a deafblind qualified interpreter may be necessary. Using a communicator-guide goes a long way to breaking down communication barriers for deafblind people.

The third problem concerns access to information. Deafblindness can heighten the sense of isolation within the community for deafblind people because they do not always have access to information. Letters and newspapers can be pushed through letterboxes, but there may be no means for the deafblind to read these unless they get assistance. it may be more practical to seek information in alternative formats, such as large print or Braille. Independence for deafblind people can be improved if they are given access to specially equipped computers that allow them to access the internet, enabling them to communicate with the community through email and social networking, and access information through websites. This leads on to another role for communicator-guides, facilitating access to information for deafblind people. They can spend time relaying the information to deafblind people, help to arrange for information to be provided in alternative formats, and making deafblind people aware of what is happening around them in the community. For example, a deafblind person may be out shopping with communicator-guide support, and the guide lets the deafblind person know that there is a new cafe just opened. That is the kind of information that enables deafblind people to feel a sense of belonging in the local community.

In summary, communicator-guides are the most important line of support available for deafblind people and should be central to social care provision under the new Care Act. Local authorities should actively seek out and identify deafblind people in their communities; carry out specialist assessments by a qualified practitioner conversant with deafblind issues; and lay on specialist support services for deafblind people including the availability of communicator-guide schemes. The main guiding principle of social care is to maintain the sense of well-being and the implementation of specialist assessments and support services go a long way towards meeting this objective. Unfortunately, social care is seen as a cost on society, but recent research shows that prevention and integration are more preferable to the long-term hidden costs of NOT providing adequate social care. A group of charities comprising Sense, Scope, Mencap, The National Autistic Society and Leonard Cheshire Disability commissioned an independent study carried out by Deloitte on the economic impact of social care. Details are available from Sense and Scope.

To round things off for Deafblind Awareness Week, deeper insights into the lives of deafblind people can be gleaned from the wealth of resources available online. There is a collection of videos giving personal perspectives on deafblindness. By way of celebrating the achievements of prominent deafblind people, there is a listing available on Wikipedia. A few brief biographical sketches are provided below, but feel free to explore further if your quest in life is to become an expert on deafblindness.

Helen Keller
Probably the biggest myth about Helen Keller (27 June 1880 - 1 June 1968) was that she was born deafblind and it may come as a surprise to learn that she was able to see and hear until about eighteen months old when she became ill, possibly due to scarlet fever or meningitis. Helen Keller did recover her health, but unfortunately lost her sight and hearing. After drawing inspiration from Charles Dickens' 'American Notes' that mentioned a deafblind woman being successfully educated, Helen's mother sought out a teacher for her daughter and was introduced to Graham Alexander Bell, more famous for his invention of the telephone than for being a teacher of the deaf. Bell recommended the Perkins Institute for the Blind where Helen met her teacher Anne Sullivan, who turned out to be her friend and constant companion for the next 50 years.

Many dramatic depictions of Helen Keller's life have portrayed her early years when it was the first priority of her education to teach her to communicate. It was a repetitive process when objects were placed in Helen's hand and letters spelt out on her hand - the first example being DOLL. At first, Helen did not pick up on the association between objects and spelt words, but the defining breakthrough came through when her hand was put under running water and she said her first word WATER. She went on to develop other communication skills, such as receiving people's speech by putting her hands on people's lips as they spoke and employing tactile communication methods including hands-on signing. Helen was determined to speak as conventionally as possible and her prolific lecture tours bear testimony to her communication qualities. Helen Keller is credited with being the first deafblind person to graduate with a Bachelor's degree.

Helen Keller was a prolific writer and author of twelve books and travelled extensively with her companion Sullivan to over 40 countries. She became a favourite with the Japanese people and was presented with an Akita dog. In 1964, President Lyndon B Johnson awarded Keller the Presidential Medal of Freedom, one of the United States' two highest civilian honours. Keller was regarded as a strong advocate for disabled people and went a long way to destigmatise deafblindness.

Dr. Satoshi Fukushima
Dr Satoshi Fukushima lost his sight at the age of nine and became totally deaf at 18 years. The noteworthy tactile communication method that he developed with his mother is the Finger Braille system. The index, middle and ring fingers are used to mimic a Braille keyboard and the communicating person will type on the deafblind person's receiving fingers to mimic Braille input. The finger Braille system is described in a technical paper regarding speech recognition into finger Braille (opens a PDF document).

Dr Fukushima is currently Professor at Tokyo University Research Centre for Advanced Science and Technology. His research specialities include social and psychological aspects of deafblind people.

Rev. Dr. Cyril Axelrod
Born profoundly deaf into an Orthodox Jewish family in South Africa in 1942, Father Cyril Axelrod was educated at St Vincent's School for the Deaf in Johannesburg. After a painful spiritual journey, he made the transition to the Catholic faith and decided to become a priest after observing how deaf people felt excluded from Mass. Father Cyril spent some time in South Africa developing multi-racial deaf services in defiance of apartheid. In 1979, Father Cyril received the devastating news that he had Usher Syndrome and would eventually become blind.

Undeterred, Father Cyril regarded his forthcoming deafblindness as an opportunity to develop a ministry for deafblind people and is the world's only practising deafblind priest. He is based at the parish of Our Lady of Hal in Camden Town providing services to blind, deaf, and deafblind people.

Father Cyril was awarded the OBE in 2013 for services to deaf people in Hong Kong and is currently working on promoting deafblind awareness in developing countries. Father Cyril has written his autobiography, 'And the Journey Begins' which was published in 2005.

Deafblindness is one of the most challenging disabilities that a human being can endure due to our reliance on our eyes and ears for everyday interaction with the world around us. Becoming deafblind does not always mean that you have to stop living life. With the right level of support, deafblind people should be able to lead fulfilling and purposeful lives.

About the Author

Dr Philip Gafga is deafblind with advanced Usher Syndrome. He went to Durham University to read Economics and obtained his Bachelor's degree in 1985. He went on to do postgraduate research in Monetary Economics for his Master's degree. After a few months circumnavigating the world solo, taking in Australia, New Zealand and America, Dr Gafga went on to do further postgraduate research in Financial Economics and received his PhD after submitting a thesis on the economic forecasting aspects of the yield curve (opens a PDF file from Durham University Library).

Dr Gafga was actively involved as a trustee for deafblind charities, Sense and Deafblind UK. At Sense, Dr Gafga was a member of Sense Council and was the Council Management Link on public policy and campaigns. In 1999, Dr Gafga joined the board of trustees at Deafblind UK and took on a leading role as Chair for nearly 10 years. Early in his tenure as Chair, Deafblind UK and Sense campaigned jointly to persuade the Department of Health to bring out Section 7 guidance for deafblind people.

Dr Gafga has accumulated much experience of using technology and adapting computers and software to make them more accessible to deafblind people who are either severely or profoundly deaf.