Humberto Márquez
CARACAS, Sep 25 2006 (IPS) – An organisation that assists the deafblind has helped make their plight more visible in Venezuela, while knitting a network aimed at improving the quality of life of those who are dual sensory impaired.
Sordociegos (Deafblind) of Venezuela (SOCIEVEN) has worked for 10 years, teaching and improving the quality of life of around 100 deafblind people, and now we are seeking out many more, people we have never met, María Luz Neri, director of the non-governmental organisation, told IPS.
According to her estimates, there could be as many as 4,000 dual sensory impaired people in this South American country of 26.5 million.
Neri said the situation is similar or more accentuated in other countries of Latin America, according to reports by the International Council for Education of People with Visual Impairment (ICEVI) and the Perkins School for the Blind, based in the United States.
SOCIEVEN understood that just as we directly help a few dozen people, we can have a multiplying effect by training professionals. We are pushing for a master s degree programme in a local university, said Neri.
Centres for Integral Attention to the Deafblind have been set up by the Education Ministry in all of Venezuela s 23 states, and deafblind adults have created a mutual help association which also seeks to promote their interests.
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The centres and the association have located some 400 people suffering varying degrees of dual sensory impairment. Some are deaf people who have developed cataracts. Others, in the Caribbean island of Margarita, involve cases of Usher Syndrome.
Usher Syndrome is a recessive hereditary disorder that takes three forms. In the first, children are profoundly deaf from birth and have severe balance problems. They begin to develop vision problems by the time they are ten, and rapidly become completely blind.
In type two, children are born with moderate to severe hearing impairment and normal balance, and their visual problems tend to progress more slowly, and to begin shortly after the teenage years.
In type three, children are born with normal hearing, which worsens over time, at varying rates. Some also experience balance problems. These individuals are usually both deaf and blind by mid-to late adulthood.
Dual sensory impairment is not necessarily linked to poverty, although the biggest causes are rubella (German measles) and premature birth, and the people who are the least informed are the most vulnerable, said Neri.
Deafblind people around the world are organised in national and regional associations and in global organisations like the World Federation of the Deafblind or Deafblind International.
The Declaration of Basic Needs of Deafblind Persons , adopted in 1989 at the Fourth Helen Keller World Conference in Stockholm, states that the deaf-blind have the right to specialised services in order to secure maximum independence.
The declaration underscores that Communication is the most formidable barrier faced by deafblind peopleàThis being the case, it is strongly urged that a high priority be placed on training deafblind individuals in effective communication methods like sign language, manual alphabets, oral training, and Braille
It also points to the need of the deafblind to have access to productive jobs, adequate housing, recreational opportunities and interpreters.
The most famous deafblind person in history was Helen Keller (1880-1968). After becoming the first deafblind person to ever enroll in college, she became a writer, and was a tireless defender of the rights of the disabled and of workers, as a socialist. She wrote 11 books and in 1964 was awarded the Presidential Medal of Freedom, the nation s highest civilian award, by President Lyndon Johnson.
In Venezuela, SOCIEVEN has adopted a multi-pronged strategy, seeking sponsors for its activities and financing for technical aids such as hearing aids, special glasses and magnifying glasses, organising educational projects, and recruiting volunteers and ambassadors for the cause.
These ambassadors are public figures from the arts or from show business, like Vanesa Peretti, one of the contestants for the 2005 Miss Venezuela beauty pageant, which is watched by millions of TV viewers every year.
Peretti was the first deaf woman to take part in the pageant since it began to be held over half a century ago. She drew a great deal of attention as she communicated with her companions, the jury and the public in sign language. Having placed third, she will compete in the next Miss International pageant, in Japan.
Vanesa has been a beautiful example of reciprocal support, said another ambassador , actress Anabella Troconis, by demonstrating the successful integration of a disabled person, promoting SOCIEVEN and, on our part, receiving collaboration in the form of an interpreter and a hearing aid that enables her to hear some sounds.
