KEYNOTE ADDRESS KEEPING IN TOUCH BEYOND TWO THOUSAND
Graham Hicks

It is a great honour and privilege to be invited half way round the World to give this presentation at the 5th Australian National Deafblind Conference. It is surely not often that a Pom is invited down under, as we say, to speak at a conference.

Our good friend Sharon tells me you would like to know about me. So who is this Pom then and what is his background? What are his secrets of success, if any? What makes him tick and how come he is married to such a beautiful, charming, intelligent and talented lady?

Let me start by saying that I am actually human - nothing out of the ordinary you might say. Strong willed and determined to succeed (until it comes to saying no to a burger and chips). I have never seen being deafblind as a reason for not doing something - in fact the reverse is true - all the more reason to do - if only to show others that it is possible and usually it is. But most important, I believe in enjoying life to the full. I am damned if anyone is going to stand in my way. I am not pretending it is always easy for often the going is tough and there are always new challenges to face and overcome. In all honesty I know many sighted-hearing people who would not contemplate doing some of the things I most enjoy - cross-country motor cycling for one and jet biking for another. Often it is well meaning people who stand in the way - parents who are over protective - afraid you will be hurt or think it will be easier or quicker if they do it for you. I am sure many in this room can relate to this for it is not just us Poms that are guilty. Nor am I trying to pretend that it is always easy to let go.   You do think your actions are in the deafblind person's best interest, but are they? Part of any person's development is through the experience of doing and learning from our mistakes. We learn from experience and thus we become more able, more confident and more independent. If those around us from an early age cushion us from the 'Real World' we may never learn, never become confident or independent. It is not the disability that determines a person's ability and skills but their environment and the interaction of others. No matter how hard it may be we must strive to empower and enable and never disable.

I was born with a severe visual impairment and from the age of six my hearing gradually deteriorated until I was totally deaf to speech at the age of 16. My education was mainly at Linden Lodge School for the Blind, London. Staff had no training in teaching deafblind children and as my hearing became worse I was left out of classes more and more. I was regarded as being below average intelligence - a typical attitude toward deaf children. Some teachers did make a real effort to keep me involved but there were no interpreters at the school and so it was impossible to participate fully in group activities, or follow a teacher giving a lesson to a class. Subsequently, I did not get a good education. My experience of engineering college was similar - I was used as cheap labour to operate machinery and was not able to attend the theory side of the course. Eventually, after two years I decided the course had nothing to offer me of value. I took up a new course in the cycle retail and repair business and went on to work in a number of cycle shops in and around London. In 1983 I decided to set up my own cycle retail and repair business with the support of my family. This proved very successful. Then in 1986 I was awarded a Winston Churchill Fellowship to study services for deafblind people in Canada and the USA. This eight-week trip was to prove a valuable experience.

In 1987 I left the cycle business to work for Sense as Development Officer - Technical and Welfare Services. At the same time I moved to London. My new roles included committee work, editing Sense's newsletter for braille readers and deafblind awareness training. 

More recently I lead a project to develop what we call Communicator-Guide services for deafblind people. Other work has included producing policy documents and a good practice guide "Making Contact. 

Currently I work in the Campaigns department. Since 1995 I have also been a director of Deafblind UK.

Out side of work I have many interests. Apart from those which I have previously mentioned I am also keen on DIY. I enjoy carpentry, plumbing, and most recently, electrical wiring. Once you know the basics and know which is the live and the neutral wire it is quite simple - we now have many more power points at home and as yet no one has received an electric shock!

In 1994 Jackie and I both applied for the job of Chief Executive of Deafblind UK - the best person naturally got the job and that was the beginning of the four year journey which brought us together.

I am now going to talk about services for deafblind people.

Sharon tells me that as far as specific services for deafblind people are concerned Australia is still in the dark ages and that it depends very much on where you live and your determination or otherwise to fight for your rights, as to whether you get services or not. Oddly enough the same is very true back home in the UK. There are no laws which force central or local government to meet the specific needs of deafblind people such as one- to- one support. Local government has to keep a register of blind people and deaf people but no register of deafblind people is required by law. This means that many deafblind people go unnoticed and unsupported. It is not uncommon for a local authority in the UK to say that there are no deafblind people living in their area when in fact there are many. On the other hand some local authorities do provide some services for deafblind people, plus the 'squeaky wheels' sometimes manage to persuade authorities to provide them with services which are not available to other deafblind people in their area. So on that basis I think we are travelling the same road - a road which is often bumpy and obstructed. But we do make progress, if not somewhat slowly and there is light at the end of the tunnel if not some distance away.  So although we live some 10 thousand miles apart I say to my brothers and sisters in Australia let us move forward on our long journey together and share our experiences. We must keep in touch and build new links for strength is in numbers. We must fight to maintain and improve touch with the World at large or we will become even more isolated.

In the UK we have two well established deafblind organisations, Sense, who work extensively with children and congenitally deafblind adults, and Deafblind UK who are an organisation of deafblind people, providing a range of services mainly to people with acquired deafblindness. It is true to say that the majority of specialist deafblind services are provided by these two agencies. There are also some services for blind or deaf people which are very useful to some deafblind people. For example Typetalk, the National Telephone Relay service for deaf, deafblind and speech impaired people. This service makes it possible for textphone users to make and receive phone calls from hearing people. Typetalk has undoubtedly had a very valuable and positive impact on the lives of deafblind people who are able to access it through braille and large print computer systems. No longer are those of us with access to Typetalk dependent upon hearing people to make and receive phone calls. We now have the independence to phone any hearing person in the world who has a phone (and at any time of the day or night). I even phoned Australia early one morning to sort out our accommodation here while Jackie was asleep in bed.

Over the past 20 years Sense has grown rapidly from a small self help group into a major charity providing a range of services including family advisory services, residential group homes and advisory education services for deafblind children. Sense is also heavily involved in usher syndrome research and service provision. The organisation also has an extensive family network with branches in many parts of the Country. Sense has been particularly successful in a number of areas including:

* Campaigning for the now established Measles, Mumps and Rubella vaccination.

* Recognition by our Government of deafblind children's special needs - each child is entitled to a specialist assessment which looks at the whole child and all areas and aspects of development.

* The establishment of the Post Graduate Deafblind Teacher Training Course in Birmingham. This course has resulted in a growing number of teachers qualified to work with deafblind children in local authority and specials schools.

* Sense International has grown rapidly developing awareness of deafblindness and supporting the establishment of new deafblind organisations in the Third World including India and a number of other countries.

Deafblind UK, previously the "National Deafblind League" was established by a small group of deafblind people in 1928 to offer practical support to people with acquired deafblindness. Deafblind UK provides a range of services including Rehabilitation, Housing, the National Helpline, Holidays, Activity Breaks, Counselling, access to I.T. training and much more.  Deafblind UK is governed by its board of directors - most of whom are deafblind themselves.  Our membership is currently on course to pass the 2000 mark this Year.  I will leave my Wife, the Chief Executive to tell you more about Deafblind UK, for who better than the boss herself!

You may also have heard rumours that our little Island has been very busy drumming up support for Civil Rights for disabled people. The Disability Discrimination Act was passed in 1995 but only recently have many of the duties become law. The DDA as it is known makes it unlawful to provide a less favourable service to a disabled person on disability grounds and must make what are called "reasonable adjustments" to make services more accessible to disabled people. For example a bank must make information available in braille and a supermarket must provide assistance for disabled people with their shopping. However, the DDA does not go far enough for those such as deafblind people who have a more severe disability. For example the Act will not mean that deafblind people will have the support of a link person to enable access to services. This has meant that we have had to fight for deafblind people's right to one-to-one support and I will come back to this in a minute.

Meanwhile, the disability movement has won it's next victory - the Disability Rights Commission has just been established this Month. The Commission has new powers to enforce disabled person's rights under existing legalisation. They will also advise Government on amendment to the DDA and further legalisation which is seen as necessary to strengthen our rights.

It has however become apparent that deafblind people cannot rely upon the main disability movement to achieve full civil rights for deafblind people.  For example, the need for every deafblind person to have access to one-to-one support - a trained and skilled person who can link the deafblind person with other people and any service they want or wish to use - be it the supermarket, the pet shop, church, doctors or the theme park. The link person is our key to real access, to a real life with real quality and choice.  We concluded that the only way forward was for Sense and Deafblind UK to join forces and speak with a united voice on behalf of deafblind people. We had to put across the message loud and clear that deafblindness is an unique disability in it's own right - that first class services for blind people and deaf people do not equal good services for deafblind people.

In April 1998 I visited Deafblind UK to propose that Sense and Deafblind UK work jointly on campaigns and that was how it all started. One year later we launched the Yes to Access campaign at Parliament in calling for the legal right to one-to-one support for every deafblind person. This right has not yet been won but we have succeeded in gaining parliamentary interest in our case and have now lodged a bill in the Upper House aimed at establishing our rights in law. By the time I give this presentation the committee stage of the Bill should have just commenced.

The following is an extract from my Lobby of Parliament speech:

"Today is an important landmark for deafblind people in the UK. We are here to highlight our need and demand for one-to-one support. We need one-to-one support in order that we can take an informed, full and responsible part in everyday life, and access all services which are available to other people.  We need one-to-one support to break the isolation which we are forced to live in!

For too long deafblind people have been excluded from society. Many of us remain prisoners in our own homes (for some that has been one or more life terms), yet we have committed no criminal offence. Daily we face systematic discrimination similar to that faced by black people in South Africa under Apartheid. We have been turned away from shops because our communication was deemed too slow. We have often been refused one-to-one support because others didn't think it was necessary for us to get out and about and enjoy life on Earth.

You and I know just how wrong, unjust and unreasonable this is. We are equal citizens and deserve far better treatment! This is our planet and our lives. I challenge anyone to come forward and say that one-to-one support is not a "reasonable" adjustment for deafblind people.

We welcome Margaret Hodge's comment last December that Government intervention was needed to overcome discrimination against deafblind people. Our right to one-to-one support will need to be enshrined in legalisation passed by our Government. Funding for one-to-one support will need to be provided by Central Government. We would expect no less from a government which has rightly emphasised the importance of meeting the distinctive and different needs of specific groups of disabled people.

This campaign will continue until the necessary legalisation becomes law and every deafblind person has one-to-one support as a right and at a level which fully meets their individual needs."

Sense and Deafblind UK are also about to launch a new campaign aimed at persuading service providers including shops, banks, pubs and restaurants to get deafblind friendly. We will be encouraging firms to train staff in deafblind communication and provide information in braille and large print.

Having looked at link services I now want to turn to another area of considerable interest to deafblind people.  The computer age and other advances in technology have brought major advantages for some deafblind people - particularly those who can read braille and large print. My work with Sense came about partly as a result of a small project which linked deafblind people up to the telephone using versabrailles and modems. Today my trusted computer is the cornerstone of my access to a wealth of information. It functions as a braille textphone and answerphone with auto dialling (thanks to Steven Hazelhurst a deafblind computer programmer in the UK) and also gives me access to E-mail, Teletext and the ability to send faxes. The word processor is also a powerful tool together with a scanner to read printed text.

These are just some of the many functions to which deafblind people can put a computer to vastly improve their access and independence. 

Technology has also helped in other areas such as microwave ovens and food processors which are safer to use without sight.

Technology however, continues to march on with an ever-quickening pace and deafblind people are in real danger of being left behind.  For the tide which has borne us along is now turning against us! Increasingly technology depends on sight and hearing for access. Windows has taken over from text based computer systems and there is an increasing trend towards talking computers. Additionally manufacturers are moving away from dials on microwave ovens in favour of touch-tone pads, visual displays and even talking microwaves. These and other developments are good for hearing-blind and sighted-deaf people but of no use to deafblind people who depend upon touch. If these trends go unchecked our access could be seriously threatened. We need to work hard to ensure our needs are included in the design of equipment. We must find ways and means of keeping pace with technology beyond the Year 2000. How long will it be before deafblind people have a braille mobile phone which fits in their pocket? How long before we have a speech recognition to braille device? Make no mistake, the technology is already here - the problem is that no one is yet prepared to harness it to our advantage. How can we overcome this barrier to our access? Can we build a viable international market for deafblind friendly technology?

Here is a challenge for you and I - equally true in the UK, Australia and in every other part of the globe.

We must not give in!  Defeat is no option!  We must go on!  We must fight for our rights and win!  Thank you