When the theme of this Conference was decided, we thought it was necessary to reflect on it. We were just one step away towards the foundation of the World Federation of the Deafblind, it was a good moment to know each other, to know who we are, and to reflect on our past, present and future. We are at the beginning of a new and historic stage.

We, deafblind people, have always been in a sort of "no one s land", especially those of us who are totally deafblind. When the first organisations of the blind and first associations of the deaf appeared, we tended to look for their support. We went to search for support to one or to the other depending on which of the impairments we had first, but we did not always find a satisfactory solution since these institutions did not have into account some of the aspects of blindness or deafness respectively.

Becoming deafblind is such a difficult condition that usually our first reaction is of total rejection, we do not want to see reality at all and we might say- I am not deafblind. I am just deaf! or the other way around. This is a natural feeling, since once you are used to being sensory impaired, suddenly another impairment comes up and this is really hard for us and for our family. On the other hand, we are not always the first ones to find out since the majority of parents tend not to tell their son or daughter suffering from it about the problem, which is in a way a logical human reaction.

This means we need lots of time to accept it and our families too. We go from doctor to doctor, we try alternative medical methods such as naturist medicine, homeopathy, acupuncture, and we even go to alternative medicine doctors, but no one gives us a solution. However we keep on looking for a miracle.

Sometimes during such a long time we loose a very valuable time of our life, because although we do not see a solution for our problem, we can not forget the present time: "Carpe diem".

We get obsessed with "what is coming next" and we feel so desperate that we may become passive, reserved and have psychological problems very difficult to overcome. However the greatest problem of all is that our personal development, our natural evolution may become stagnated, unless we are courageous enough to face the only feasible although most difficult way out- Reality.

Some of you may think- this is easier to say than to carry out! Yes, that is true. But it is also true that is the only way out that can be effective.

Most of us when we got this condition we thought we were the only ones, there was no one with such bad luck. Some of us had heard to talk about Helen Keller, but it seemed a very far away story, that only had happened once. However reality was not like that, there were more deafblind people than we thought about, but geographical dispersion caused that this "unknown" impairment for the majority of the population was not researched into. In many countries it is still an "invisible" problem.

Although our impairment is very hard, there has always been nonconformist souls, deafblind people that got in contact with each other and decided to carry out what in theory seemed impossible, that is to create their own organisation. The first one we know of was the National League of Support of Deafblind people, United Kingdom, 1928.

There were and there are several centres for the education of deafblind children in different countries, but there are not many programmes or centres to attend people with acquired deafblindness, although we represent 90% of the deafblind population.

We have had to create our own associations, to do things on our own, step by step and every small step was a gigantic one. Our implication in this task has always been decisive. The rest of the organisations, although with very good will, are concentrated on their own problems which is very logical.

In my country it has been like that, it has been necessary my involvement in the work and creation of the Spanish Deafblind Association in 1993, so that our existence and our specific needs became known. In this work we were very much supported by the Spanish National Organisation of the Blind.

We started training the first guide- interpreters and this made possible to carry out activities for deafblind people. It was through these activities that gradually deafblind people participating found an IDENTITY of their own and found they had conquered "their own land".

However there are many that have not yet discovered it. This is the great challenge all we that are here have: to make possible for them to discover it. There has not been anything as helpful for a deafblind person in order to accept his condition as to find and share experiences with people that have the same problem.

The complex nature of deafblindness

We all do not get to this stage in the same manner. Some people are congenitally deafblind, others are congenitally deaf and suffer a severe visual loss. There is a third group of congenitally blind people with a severe hearing loss and finally there is a fourth group of those so- called late deafblind people, who are those that have lived visual and hearing experiences before becoming deafblind. As we can see we are a very complex and heterogeneous group and each case requires individual attention.

However we do share a common problem, we have to change our communication system. Communication is an obstacle we will find frequently, since it is difficult to expect that society in general becomes acquainted and learns our communication systems.

And this is a problem that exists even among us. Depending on which group we belong to we will be using sign language, manual alphabet or other systems. Congenitally deaf people that loose their sight later in life prefer sign language, their natural language, and this makes difficult their communication with people that have been blind first. Since the later and the ones that belong to the fourth group are used to oral language and it is very difficult for them to learn sign language.

It is more logical and this is very important that we all learn the manual alphabet or a common system that is good for every group. We should be very conscious that communication among us is essential. How are we going to ask the others they should learn to communicate with us, if we are not able to communicate among ourselves?

We are such an small group that it is necessary we all know that our UNITY, above all differences, is crucial to fight for our RIGHTS, to get our self-respect, our knowledge of one another and our sense of responsibility. In other words, to help one another. We will only achieve our objectives this way.

What it means to be deafblind? As we can see, each one of us could offer different answers, but there are specific aspects that define and differentiate us from other groups of disabled people.

•    : The need to use the sense of touch to communicate, access information and the social and cultural context we live in.

•     If we have any residual sense, we can not take the same advantage when using it as those people that have just one deficit.

•     Any other group of disabled people has either vision or hearing. In our group, the combination of both impairments means that deafblindness is a dual impairment and a unique disability that requires to employ special strategies and methods in order to reach the same goals as any other citizen, whether is disabled or not.

•     As the deaf community, we need interpreters and as blind people we need guides. The so-called guide- interpreters not only give us information on what is being said, they also tell us what is happening around. Without this information we would not be able to take decisions on our own. On the other hand we need many interpreters for our activities and this makes them much more expensive.

We have enough examples with these to understand everything we have said before. It is very important to KNOW OURSELVES and then make society to be aware of our existence and our specific needs.

In order to unify in the best possible manner our heterogeneity, it is necessary a good definition of deafblindness. We should not see deafblindness as a sum of two impairments, we should see it as a whole, as a disability of its own. It is not correct to use the measurements that define deafness and blindness, since with just one of the impairments, a person has another sense that can use to replace the other and this does not happen in our case. For this reason in countries where there is a legal definition of deafblindness, these measurements are not used.

We have already said that living with deafblindness is not easy and that given this condition the only possible way out is to accept reality. No matter how long it takes but accepting we are going to live with it is an essential step to change our lives. Our potential is greater than what we think and we should end with the stereotyped idea that deafblindness is almost the end of everything.

It is not easy for us but sooner or later, life blooms inside us and we start feeling the need to do something. This will be the beginning of our resurrection.

Where can we get to? We are the only ones who can set this goal, keeping ourselves within our possibilities and thinking in a clear and realistic way. Since Helen Keller until now, many deafblind people have been able to get a reasonable social integration, university degrees, employment, marriage and children and they got there because they set themselves these goals. This is not exclusive of us, anything a human being wants to achieve requires an effort, and faith makes possible for many to get it. We CAN ALSO GET IT.

And the way to achieve it is by creating our own Associations, maintaining contacts with other deafblind people, organising meetings somehow, counting with the resources that we may need such as friends, family, volunteers, etc., until we are able to train guide- interpreters as many others did before us. We should also participate in activities at an international level, defending our RIGHTS, our IDENTITY and keeping a tight UNITY. Shoulder to shoulder we will all get our objectives. Knowing and educating ourselves we will make society to know us and become aware that we are as useful and worthy people as any other citizen.

At the moment, we have a very clear objective and that is to support completely our WFDB.

Daniel Alvarez Reyes
Chairman World Blind Union