It is both a pleasure and a honour for me to give the keynote speech in this 7PthP Helen Keller World Conference, even though the topic What it means to be deafblind?, is a complex one and it is not easy to talk about it since I do not want to deal with this subject from a personal point of view but to follow a global perspective since each deafblind individual is different.
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.
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2004 - 2017 // Bogotá - Colombia