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Deafblind UK is driven by the fundamental principles of participation and empowerment. The only way to empower deafblind people is to give them all the power. Deafblind UK gives all the power to deafblind members. The Chairperson is deafblind, he uses manual and no speech and all but one of the Directors are deafblind. At board meetings they use six different communication methods to make decisions on 5 million pound turnover.
This talk would be better titled, ‘The Smaller Picture,’ because in the world of deafblind people, things that happen are too small. In 1928 Deafblind UK was a small group of deafblind people. They felt that the conditions they faced were hard. In New Zealand a world organisation of deafblind people is being formed because life for deafblind people is “unjustifiably cruel and hard” as it was in 1928. Last year in Perth, Australia, they held the 5th conference.
Deafblindness is a condition which brings a unique set of challenges to people throughout the world who share the same experiences. People with a dual sensory impairment undoubtedly face challenges. How society addresses these challenges will determine the quality of their lives. People do not know that you can be both deaf and blind. If the impairment is acknowledged then often the problem lies in people’s attitudes. Deafblind people are ignored or treated as second-class citizens. They are written off by a society driven by vision and hearing. They have to fight for specialist services which should be a right.
Sensory Impairment is not one thing, deafblindness is not a ‘branch’ of either deafness or blindness. Deafblindness is usually lumped in with deafness or blindness. Blind and deaf people do not have a lot in common. There are three distinct types of sensory impairment deaf, blind and deafblind.
In the Nordic countries like Scandanavia, rights have been established. Deafblind people have the right to appropriate 1:1 human support. This includes Norway, Finland, Sweden and Denmark. The amount of time given is not 1 or 2 hours a week to go shopping but 40 hours so that they can plan their lives.
In 1999 Sense and Deafblind UK agreed they would like to take part in some joint campaigning. I thought we should approach the Government to ask if deafblind people in Britain could have the same rights as those in Nordic countries but we failed to win support. Government Ministers could not see that it was a rights issue. They thought it was a welfare issue. Deafblind UK implemented a minor lobbying campaign. We approached Margaret Hodge, the Minister for Disabilities. Her response was to ask “Why are they (deafblind people) different, apart from their disability.” We decided we needed some State intervention. We were then directed to the Health Department.
Lord Ashley’s private member’s Bill in which Sense and Deafblind UK has played a major role gathered all party support. Lord Hunt said there would be a consultation, the result of which was Section 7 guidance. The new policy guidance falls short of legislation but Section 7 means that returns must be made to Government in which Local Authorities need to show improvements have been made. Local Authorities need to identify, make contact with and provide trained 1:1 support workers. This applies in England and Wales but not in Scotland. An assessment has to be carried out by a specifically trained person. Information must be available on services in different formats. There must be one senior member of staff who is responsible for services to deafblind people. Local Authorities must have access to training for working with deafblind people. Deafblindness is now officially recognised by the Government. These entitlements could be taken further using the Human Rights Legislation.
50% of Deafblind UK members have additional health problems or disabilities. Deafblind people in hospitals are sometimes not informed if they are having an injection, intimate examinations, and often news of cancer is given to relatives. Deafblind people do not feel pain, apparently. Much remains to be done but Section 7 guidance is a good start which it is hoped can be replicated in Scotland.
Deafblind UK have produced The Deafblind Helpbook £7.50 available from Deafblind UK or Deafblind Scotland.