Preamble I'd first like to thank you for inviting me to speak. I find it quite exciting being here across the other side of the world where everything is in many ways so different.. And yet of course what brings us here is the same thing. Each one of us here forms a small part of the world of deafblindness; our parts in that world may be very different but I hope as we look to the future we are all aiming for the same thing. Perhaps that thing can be best summed up in Vision Statement of my own organisation, Deafblind UK: 'A society in which deafblind people have the support and recognition necessary to be equal citizens.' I hope, like me that you believe we should already have a society in which people who cannot see or hear well should be equal. But sadly that is not the case. Not in the UK, not I know in Australia and to my knowledge nowhere in the world, although some of the Scandinavian countries are a lot further ahead that most. I spoke earlier of us each having a different part in the world of deafblindness. What I will say today is drawn from my experience and my part in that world. I speak on two main counts, as the Chief Executive of an organisation of 1855 deafblind people in the UK, and as the wife of a deafblind man. What I have to say is based on my interaction with those 1850 deafblind people, my own husband in our daily lives and with the Government, policy makers and service providers who seems so slow and reluctant to do what they should for deafblind people. Over the past six years a number of issues have emerged as important, as the things I believe the deafblind world should be fighting for with one voice. For today I have tried to group these into ten major themes. I will briefly run through these now: 1. Greater Awareness We all talk about awareness. Often it's regarded as a kind of 'add on' that would be useful. But what I am saying is that it is the single most important thing we should be working for. Not just awareness among professionals, but awareness amongst the public-the newspaper readers, the soap opera watchers, kids just starting school, little old grannies and smart young executives. It is never to early to start to educate people that not everyone's world is based on the ability to see and hear; we do other senses and choices as well and that realising this can enrich all our lives. The only way we can pave the way for the minority of people who are deafblind is for the majority who are not deafblind to have an in-built awareness that this disability exists. At DBUK we are making this a major priority in our next Five Year Plan. We have appointed a full time media and PR person whose sole purpose is to keep deafblindness in the public eye with an endless onslaught on newspapers, radio, national regional and specialist publications. Posters, leaflets, talks to mainstream groups all help. In addition to this we have picked up major issues and campaigned for better recognition-the Red and White Cane for example. In 1995 we relaunched National Deafblind Awareness Week, a week of major activities focusing on our work and deafblind people. We run what we call 'Deafblind Friendly Awards' during that week where deafblind people can nominate particularly friendly people or businesses to be presented with a special gold badge and certificate. 2. Deafblindness is a disability of a different order One of the most common and arguments I am faced with in my work is people saying to me ' we can't make a special case for deafblind people because we' d have to do it for everyone else too.' This is simply rubbish and yet everyone seems to believe it. In pushing our case we have to stick our necks out and say,' no actually, deafblindness is a whole lot worse than most other disabilities. The degree of isolation, disempowerment, loss of independence , the cutting off from the world, no radio, no TV to provide even electronic companionship makes deafblind people a priority.' We need to win special provision not be lumped along with everyone else. Deafblind UK and Sense have jointly created a 'Deafblind Persons (Rights and Recognition) Bill which is currently being discussed in the British Parliament. However, the current Government is opposing it saying legislation is not necessary because adequate services already exist!!!!! This brings me to the third thing. 3. You cannot meet deafblind people's needs through services primarily for the blind or primarily for the deaf. Throughout the UK deafblind people are fobbed off with services that only address one half of their disability , with people who may be specialists in deafness or blindness but who have insufficient understanding of a dual sensory disability. As we all know it is not blindness and deafness that a deafblind person has, it is blindness combined with deafness in a complex and intricate way which results in each sensory loss compounding upon and impacting upon the other. Such complexity requires its own dedicated services. At DBUK we campaign all the time for specialist services. For a dedicated worker in each authority to whom deafblind people can be referred. For specialist support workers. We are working, together with Sense and Guide Dogs for the Blind Association, to create a Diploma in Deafblind Studies. This will create the first qualified professionals in deafblindness. Which leads to my third most important thing which should be self explanatory: 4. Deafblindness must be recognised by Governments, by society at large as a separate and unique disability in its own right This is DBUK's position. A change of focus now as I introduce the next issue: 5. A sense of community One of the things I have learned over the past 6 years at DBUK is the huge value so many deafblind people put on the sense of community they feel when joining our organisation. It is a community with a history stretching back to 1928 when a small group of dbp came together to 'challenge conditions which seemed unjustifiably cruel and hard'. Since then many deafblind people have lived and died as members of DBUK supporting and sharing with one another to an amazing extent. As individuals they differ hugely as with any other community but they hold in common a unique experience of life that cannot be shared with those outside this 'world of deafblindness'. It is amazing how many people discover DBUK, and upon joining write to me saying 'I didn't realise there was anyone else like me, I don't feel alone anymore'. We foster this sense of community by welcoming people into it as soon as they become members of DBUK, by encouraging people with similar conditions to correspond or meet up and support one another, by ensuring the community is led by deafblind people and through the pages of the Rainbow magazine, edited and written by deafblind people. Of course it's not enough simply to offer warmth and comradeship deafblindness above all things demands practical measures and my sixth point is: 6. Additional resources and specialist training Meeting a deafblind person's needs is nearly always costly. Braille computer equipment, for example, is hugely expensive I don't know what it is here or who funds it, but in the UK it costs around $20,000 to equip someone and thousands more to train them. The funding for this has to come from private sources. Providing and training paid support workers, we call them communicator guides or guide interpreters is expensive. Producing Braille or Moon is expensive and so it goes on. The answer is simple: special money, Government money needs to be made available in recognition of all this. The arguments against it are pretty weak, after all there are not that many deafblind people. It's not going to break the national bank. Likewise resources need to be allocated to training people with the skills that deafblind people need and deserve. In the UK, with precious little extra money from Government, charities such as DBUK are left to provide what are really welfare services ourselves. Just to give a brief examples we have a team of 16 regional officers covering the country visiting deafblind people in their homes, undertaking specialist assessments, offering rehabilitation, recruiting and training volunteers, accompanying people on hospital visits, counselling. On top of that we have technicians who assess people fro specialist computer equipment and we raise funds to provide this. And this is just a snapshot of what we do. Nearly all of this work is still funded from charitable sources, although we work hard to form partnerships with others if we can and things are improving at local level. Point number 7 is also one which is quite obvious and yet one of the challenges we find hardest to overcome in the UK: 7. Deafblind people need activity, occupation, the chance to contribute How many deafblind people in Aus sit at home, alone, with nothing to do? Certainly in the UK this is a major problem. The solution isn't always jobs and employment initiatives. For some deafblind people the demands of a full time job would just be too much on top of the other challenges daily life brings. But this doesn't mean that they want to do nothing at all. What about access and opportunities for learning, access to clubs and societies, trying things out to see what they are like. An often heard cry from our 1800 odd members is 'I wish I could do something to help instead of being on the receiving end all the time.' At Deafblind UK we have succeeded in handing over the balance of power to deafblind people, it is their organisation . They Chair and direct the organisation through a Board of Directors that is over 90 per cent deafblind. The members of DBUK actually own the company, and many deafblind members are what we call Membership Support Workers, effectively active volunteers who visit and work on behalf of other deafblind people. In addition to this three senior staff are deafblind and our receptionist is deafblind so that the first person you meet on entering our HQ is a deafblind person. All this means is that deafblind people are contributing and controlling, rather than sitting back and just receiving. At local level in the home we endeavour to provide volunteers (we have 300 trained volunteers ) to go out and support people in an activity of their choice, or we provide materials if people wish to do craft work in their own homes. At our training and rehabilitation centre we offer courses in cookery, creative writing, health and fitness etc so that something of interest is always going on. Point number 8 is another thing that seems incredibly logical and yet is a source of many problems: 8. A deafblind person's life situation needs on-going monitoring and review By this I don't mean that deafblind people need to be continually intruded upon against their wishes, but that they should be part of a system that cannot lose them. You may have this in place already, I don't know. but what frequently happens in the UK is that the welfare and health services regard a deafblind person's needs as a 'one off'. The will go in and assess the situation, perhaps provide a piece of equipment or some time limited rehabilitation and then withdraw thinking that the problems are sorted. But we know that most people who are deafblind have deteriorating conditions. Often the rate of deterioration of eyesight or hearing cannot be predicted. Life situations change-for example a relative or carer may be less able to cope. Such situations should not be left to get to crisis point before anyone notices. A simple system is needed where specialist services were regularly check the situation of each deafblind person. This would make adaptation to changing situations far easier. At DBUK our Regional Officers keep records on all their members and revisit them at regular intervals to stop them 'slipping through the net'. We're nearing the end now of these 10 points you'll be glad to hear-unless I suddenly think of another one!! Point number 9 is about knowledge 9.We need a well respected single international body of knowledge on deafblindness When I first took up this job I was amazed and alarmed to discover there was no real reference point for deafblindness. It is such a small minority within each population, there are so few professionals who have made it their career, the nature of the work is so specialised and so pioneering and yet many of us are going round in circles or reinventing the wheel. In our new National Centre for Deafblindness which I mentioned earlier we are going to address this in the UK at least by creating a research and information centre. This will collect and catalogue as much existing material as possible, and then identify gaps in our knowledge and seek the funds perhaps in partnership with universities, to undertake new research. The area of technology for deafblind people is a particular target. And finally 10 We need to campaign hard for the other nine things! I wish we didn't. I wish we could get on with doing our work directly with deafblind people. I wish deafblind people didn't have to continually parade themselves before politicians and service providers saying' look at us, remember us, please could we have services please could we have special rights that take account of our unique disability. ' And I wish they didn't have to keep getting no for an answer. But they do and therefore deafblindness has to be an on-going and active campaign within individual regions, within individual countries and throughout the world. We have somehow to become noisier and more visible out of all proportion to the number of deafblind people that there actually are. We are working on the theory, in the UK at least, that if we make a real nuisance of ourselves then in the end they might give us what we want just to get us to shut up and go away!