Frances Rickford listens to the charity that uses computers,
the Internet, and a simple alphabet which takes only half an hour to learn,
to keep deafblind people in communication with the world.
By FRANCES RICKFORD
A KEY GOAL for the charity Deafblind UK is to persuade sighted and hearing people to take just half an hour to learn to communicate with deafblind people. Unless more people bother to learn the very easy manual alphabet, the deafblind will stay excluded from basic activities - anything from using a supermarket to having a confidential consultation with their doctor.
Patrick Murphy, who lost his sight and hearing because of meningitis
when he was 15, has spoken about the deafblind at national and international
disability conferences. 'I always say we are people first and deafblind
second. Deafblindess creates problems with communication and mobility,
but if we have friends who learn to talk to us, we can manage very well.'
Murphy, almost all the 1,400 deafblind people who run Deafblind UK started life sighted, or hearing, or both, and have become deafblind either through a genetic disorder, such as Ushers syndrome, or as a result of illness or accident. Rainbow is Deafblind UK's quarterly members' magazine, edited by deafblind member Michael Gerwat. Published in Braille, Moon, large print,
and on tape and floppy disk, it is written almost entirely by deafblind members. When the charity's board of trustees meets - half of them deafblind and all of them elected by the deafblind membership - six different communication methods are used. Murphy speaks clearly and articulately, but because he cannot hear, lip-read or follow sign language he has to rely on an interpreter to spell the words on to his hand using the manual alphabet.
Murphy rents one of 12 flats in the grounds of Deafblind UK's Peterborough centre, where he lives independently, thanks to simple adaptations such as a fan linked to the doorbell, which lets him know when he has a visitor. The site also houses a training and rehabilitation centre.
Chief executive Jackie Scott explains: 'Deafblind people come here for residential courses, for assessments, for counselling, for rehabilitation or for respite. When people become deafblind they need to learn new skills, and new ways of coping. We've had mothers of young children here, and they have very successfully learned to adapt. 'Sometimes people come because they want to learn to live independently.
There is one resident here now who has a genetic syndrome which results
in gradual deafblindess. He used to live alone, then he moved in with his
parents because he was finding it difficult to cope. Now he wants to live
alone again. Sometimes people come because they want a break from looking
after themselves. They want someone to cook for them, and to accompany
on outings. People can also come here just to get together with others. We had a group of young people here last week who went out nearly every night - clubbing, bowling, and visiting restaurants.' The centre also runs courses for health and social service professionals on deaf blindness, including communication courses. The charity has 70 staff around the country, some
deafblind. Its 13 regional officers provide training in the deafblind manual alphabet, teaching it to deafblind people, their families and social workers.
They also identify and advocate for deafblind locally. 'Often we find
people have no access to the health service, and are not known to social
services. In the worst cases, they may not have a communication method.'
Deafblind UK is currently lobbying the Government for an explicit mention
of the alphabet in the Disability Discrimination Act's code of practice
on the provision of goods and services. Scott explains: 'We want it spelt
out that it is not unreasonable to expect organisations and businesses
to have at least one person available who has learned the alphabet, as
it takes only half an hour to learn.' Computer technology has
revolutionised communications for deafblind people and next month Deafblind UK opens a new technology centre, funded by the Ian Karten charitable trust.
It will train deafblind people to use the latest equipment, and also enable them to try things out and decide what would be most useful. Most deafblind people need to use Braille display computers, which are pretty unaffordable at about A38,000 each; so Deafblind UK has raised funds to buy as many as possible for its members.
Deafblind member James Gallagher has his own website, Deafblind Link, which includes a full account of the manual alphabet. He writes that computers, and especially the Internet, have provided him with a gateway to the world.
'To people like me, the net is our public library and the corner shop
where we buy our newspapers. We had no access to this sort of material
until now. It's great.' Deafblind UK, 100 Bridge Street, Peter-borough,
PE1 1DY. James Gallagher's
website is at: http://www.s55wilma.demon.co.uk/index.html.
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