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RICHARD HAWKES presentation in seminar in Bogota – September 2003

Dear friends, it is a great honour to me to have been invited to present at this seminar. It is excellent that there are so many of you here today to discuss deafblindness and I hope that I am able to do justice to the theme of this presentation and tell you a little about the situation for deafblind people around the world.

I am hopefully qualified to be able to talk about the global situation for deafblind people. I have been the Director of Sense International for the last 8 years. Sense International is a global non-government organisation working throughout the world for deafblind people. We have 6 offices around the world and experience of working in approximately 25 countries. I am also the World Secretary of Deafblind International, the world association for deafblind people, families and professionals. DbI offers publications, conferences, seminars and as Secretary I help to oversee this. DbI has members in more than 100 countries

Through DbI and Sense International I have opportunities to visit many parts of the world and see what the situation is for deafblind people. I hope to be able to share some of these experiences and knowledge with you today.

This morning you heard an overview of deafblindness, you heard about the personal experience from a deafblind person and you heard about different causes of deafblindness. I would now like you to try to think about the situation for deafblind people in different part of the world – and what the situation might have been at different times in the past.

The first thing to be clear about is that there are deafblind people in every country - and there always have been. It is certainly possible that deafblindness is not recognised or that deafblind people have been wrongly diagnosed; that there are no services and no support - but there are definitely deafblind people in every country.

And furthermore there are deafblind people of all ages and because of many different causes. There are babies born prematurely, maybe having suffered birth trauma, or with congenital rubella; young children who have contracted meningitis or measles; teenagers with Usher syndrome (meaning they have been born deaf but become blind during their teenage years); adults that have acquired deafblindness; old people who have lost their sight and hearing as a result of old age.

Just because someone is deafblind – they are still children, adults, human beings. And they still have an absolute right to everything that all other children and adults are entitled to.

We can probably all agree, for most of the last 2003 years life has been pretty awful for deafblind people in every country. Only 100 years ago in many countries deaf people were regarded as mentally handicapped and were often put in special institutions. Indeed only 10 years ago in the UK many deafblind people were still in “mental hospitals.”

Overall it is only in the last century that any services at all have started to develop for deafblind people. In some countries deafblind people themselves started to form groups and associations – and in the 1950’s specialist schools had started to exist in countries such as the US, UK, France, Netherlands and Russia. Around that time the Heads of these schools started to meet together from time to time and eventually an association was created. This was the origin of the International Association for the Education of Deafblind people, which gradually acquired more members from more countries and eventually evolved into what is now known as Deafblind International. Now in 2003 DbI has members in more than 100 countries with 650 people attending the last world conference in Canada earlier this year.

I would now like to tell you about the UK experience.

In the 1950’s there was a rubella epidemic which affected pregnant women and as a consequence many deafblind children were born. There were no services, no recognition, no support, no help for parents, no parents’ associations….Many of the parents blamed themselves for what had happened and many others were made to feel that they had been “bad parents.” This is a situation which I am sure many of you are familiar with as it is similar in every other country. But I am sure it is a surprise for you to know that this was the situation in the UK not that long ago.

Two of the parents formed a small self-help group. They had meetings, created a newsletter, supported each other, campaigned for education services and campaigned for the rubella vaccination. In the 1970’s they were concerned about what would happen when their children became young adults so they sought to develop services for young adults. They employed a member of staff and the organisation grew and grew. Services increased and from a small parents self-help group with one member of staff in the 1980’s, today there are more than 2000 staff working for Sense throughout the UK. The organisation has an annual budget of more than £50m (75 million dollars) and 90% of this comes from governmental sources.

There are now many different services throughout the UK - adult services, children’s services, support for people with Usher syndrome, services for old people, early intervention programmes, holiday programmes, group homes, outreach programmes, campaigns, communications and much much more. Sense is now the largest deafblind organisation in the world.

In the early 1990’s Sense started to receive many requests for support from countries around the world and in 1994 it was decided to create Sense International to support development of services for deafblind throughout the world. Sense International has also grown and developed and is now a separate organisation with offices in India, Colombia, Kenya, Romania and India.

As we heard this morning, with the right support and education, it is perfectly possible for a deafblind person to go to school, work, become independent, lead a fulfilling life. In many countries this support does exist, but in most countries it does not. There are many, many challenges and this is why Sense International exists.

Let us look of some of these countries:


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