AGAPASM

Alex Garcia - Deafblind Brazilian - Exclusive interview for Reação Magazine

Alex Garcia. Gaucho, he was born in the city of Santa Rosa/RS, he is probably the most known person among the deafblind people in Brazil. An active and respected member by most of them, not only in his country but even internationally. His fight, besides many other actions of great importance for deafblind people, led him to found and become the president of the AGAPASM - one of his many activities related to the theme.

Continuing the series of interviews with writers and columnists of the Reação Magazine, today we are going to know more about the fight and the victories of this warrior of deafblindness in Brazil: Alex Garcia, who has his own column "Open Space" and has written for this publication for about four years, he was invited after he participated of the "Gaucha Week of Person with disabilities", as a speaker and this event was held in Caxias do Sul/RS by this magazine in 2009.

Resident of São Luiz Gonzaga/RS,a city with about 34 thousand inhabitants, in the famous Missions Route,in the northeast of Rio Grande do Sul; It is from this city that he starts his trips through all the country and around the world, participating in events, lecturing, and receiving honours in recognition to his fight for the benefit of deafblind persons, one of these was the Senses Award, received in 2009, for the best story of overcoming of that year.

Alex was born with a syndrome whose characteristics include a progressive deafblindness, besides of other complications. Determined, he studied in regular schools and was the first deafblind person to graduate in a university, in special education by the Federal University of Santa Maria/RS. He was also the first deafblind person to write a book about education in Latin America: "Deafblindness: empirical and scientific", published in 2008. In 2010 it was the time for a publication for children, "The Great Revolution", written by him too. Among many activities he has developed, he founded and coordinated the Center of deafblindness of the Foundation for Articulation and Development of Public Politics for Persons with disabilities of the State Government of RS (FADERS).

In 2009, he became an International Leader for the Employee of Deficient Person, graduated by the Mobility International USA (MIUSA). He is also a member of the World Federation of Deafblind (WFDB). He coordinates the Regional Center of RS of the Baresi Institute, for rare diseases. Besides this all, he also chairs his own entity.

From the countryside of the country he got to the United nations headquarter in 2013... Nobody can stop this 37- year- old gaucho, who is full of energy and will to live. In anexclusive interview for Reação Magazine, Alex tells a little about his story and his plans for a better quality of life for the deafblind persons in Brazil and in the world:

Reação Magazine - Are there any reliable numbers about deafblind persons in Brazil? What is the estimation in the world?

Alex Garcia - There are no reliable numbers, there isn't any national research, everything is a estimation. I believe that there are about one million and a half deafblind persons in Brazil and we don't have any idea about the number in the world. Please look at this study: According to researchers (Chen, 2000; Moss, 1998; Roizen, 2002) about 8% of the population with Down Syndrome are deafblind persons.In the USA it is the main cause of the 50 thousand cases of deafblindness in that country. .InBrazil, there is a estimation that in each 600 thousands babies Born, one is born with the Down Syndrome, according to the Health Office, a higher average comparing to other countries where abortion of these children is sometimes of 90%. If we take this study in consideration, more than 23 thousand deafblind persons are born in Brasil every year only considering the Down Syndrome and at least 30 thousand are affected by deafblindness for other causes.

Reação Magazine - You studied in regular schools and you are the first Deafblind Brazilian person to go to university and graduate. How do you see education to deafblind persons? Are the schools prepared to have these students?

Alex Garcia - I am convinced that education in Brazil is terrible in all levels and for deafblind persons I don't have much to say. I have been to more than 30 countries and it is obvious for me that Brazil is more that 150 years late in everything related to education. It could be a high level issue in this country but there is a lack of goodwill to make it happens. If Brazilian education could reach deafblind persons, we would have more successful cases but it doesn't happen. I could develop myself because I had my family support and I learned to fight for my rights, but most of the deafblind persons do not have this opportunity. We, deafblind persons, are too invisible, this is our main problem. Invisible even to social and educational policies. Our education needs a huge planning, routine and dedication. I have just higlighted three aspects that don't seem to exist in Brazil. Think with me: Is there any planning in Brazil? Deafblind persons in Brazil will not fully develop in turbulence, it means that Brazilian education doesn't make us feel safe in relation to it, nothing has a sequence. Brazilian education is always aborting the full development of deafblind persons.

Reação Magazine - What about jobs? How is the job market to deafblind people?

Alex Garcia - We can count on our fingers how many deafblind people are in the job market. I remember someone in theUSA who said: "People are afraid of deafblind people!". I don t think so. I believe the fear is because they don t know how to communicate with deafblind people. Employers asked how deafblind communicate?. I believe deafblind people will be a part of the job market when society believes that it is possible to communicate without being able to hear or to see. This is another paradigm to be broken. Breaking this paradigm is really complicated just because of the invisibility of deafblind people. To show society that we, deafblind people, can communicate but first of all, we need to have support to be visible. Another important aspect is the understanding of the Word " employability". All the words which end with "-ability" mean " means", in other words, they mean "means between deafblind people and job itself" These means are: quality of education, quality of health, accessible transport, etc…Brazilian problems are the means not the purposes. -Esta frase ela tb não traduziu e sim adaptou :"Employment needs to make reasonable adjustments to meet each deafblind person's needs to help them to perform their jobs. We need good quality of education, good quality of health, acessibility to transport etc... These are Brasilian problems that need to be address.

Reação Magazine - How did AGASPAM start?

Alex Garcia - AGAPASM in a not too far past, was called and known in Rio Grande do Sul - RS as "The deafblind and multiple disabilities context", a pioneering work I organized and developed. I saw the cruel reality which affected deafblind persons and persons with multiple disabilities in our state. Questions began to appear in my mind and the wish of equality and full development to all deafblind persons and persons with multiple disabilities began to move my reason and my emotion. As a leader of the deafblind context in the world and sharing experiences and values with other leaders in the world, I started to make the "deafblind and multiple disabilities context" move fast. These developments were reflected in the changing of quality of life of these people. So, I became "the father" of one of the most significant public policies for deafblind persons in the history of Rio Grande do Sul and, why not saying, of Brazil and of the world. I showed it was possible to change the reality and the destiny of those people. With so many development, "the deafblind and multiple disabilities context" and I started to be pressured by people related to governments. The context began to suffer interferences from political parties and began to be used as a political tool and then started to lose its identity. I tried so hard to defend the context fighting till the exhaustion of my physical health. Defeated, I watched with great pain everything be lost. I watched deafblind persons and persons with multiple disabilities remain stactic however I felt the will for justice grow strong. With all the families of deafblind persons and persons with multiple disabilities, with friends and people who collaborated with me, I found AGAPASM. It was born from the will of justice to our people.

Reação Magazine - How do you evaluate the federal plan "Living Without Limits" in relation to deafblindness?

Alex Garcia - If I am not wrong, this plan doesn't reach deafblind persons and why do I say that? It is pretty clear that this plan was developed to reach persons with "easier" disabilities, it doesn't reach complexity. This plan doesn't reach the base of development that is necessary so It will hardly ever reach a deafblind person. I dare myself to say that in general governments do not want to spend - the money which is ours not theirs - with people with bigger complexity. Governments forget that we, deafblind persons, are also human beings. In our country, it is clear for me the historical hierarchy of human being. So, some human beings value more than others. Hierarchy, for those who do not know, has an eugenic essence - of eugenics - and it was this eugenics that was the base of holocaust. Will this hierarchy of human being in Brazil end someday? Will the "medical model"- which is the base of the culture of the standarized body in which only people who can be "fixed" are valued - end? Will the social model - in which everybody is valued in the same way as they are without having to be "fixed" - be a reality in Brazil?

Reação Magazine - Last September you participated of a Public Hearing at the National Congress to discuss this issue. What were the main claims submitted?

Alex Garcia - The main claims were:Develop a Law which can establish deafblindness as a unique disability; develop a Law which can establish the National Day of the Deafblind person; A national campaign, joining the Health Office and the Education Office to map all deafblind persons from.Some entities of Civil Society already have this methodology, educational campaign to take deafblindness out of social invisibility; create a group to form teachers to attend deafblind children; Validate the individual service with quality, even in regular schools, using classrooms with resources, monitored by this group of prepared teachers ; Form work groups with the support of the Education and Culture Office to the development of public policies to deafblind persons and emphasize in this work group the participation of deafblind persons Who have identity and autonomy to put in practice their citizenship, education of guide-interpreters, breaking the monopoly of entities making possible that each Brazilian State can be able to educate its own guide-interpreters, making feasible the formation of a national; Develop a group of lectures with deafblind persons and then make them achieve schools and teachers all over Brazil, real stories, stories of overcoming and success; Access of deafblind persons to assistive Technologies which are necessary to their safe autonomy; Access of deafblind persons to education to be able to use the available Technologies; Access to education through adapted materials and tools for stimulation; Access to implants and surgeries to the recovery of hearing and visual quality to those who want that; Treatments through the Brazilian Health care system (SUS), including the addition of the information " deafblind person" in the patient's card; Opt for the social and educational stimulation, instead of the use of medicine; Creation of a social inclusion programme, work and profit to ndeafblidn persons; Attention from the Prosecution Office; humanitary support - special pension, house, food to all deafblind persons – including elderly deafblind persons who historically had their rights to development denied by the Brazilian State and who are in abandonment and/or risk situation; Develop a legislation which can address Special Pension to deafblind persons who also have rare diseases.

Reação Magazine - During this year you also were present at a meeting at the United nations headquarters to discuss the agenda for the Inclusive Development in Disability for 2015 and beyond. How is the global situation regarding deafblindness?

Alex Garcia - The countries in the world which pay proper attention to deafblindness are rare. I really like the work which is done by Finland, Sweden, Australia, Germany, New Zealand , Canada and England. In these countries there is a great concern with deafblind persons and in these countries it is possible to find the best associations of deafblind persons in the world. During my trip to New York at the UM I could see that the American Head of State pointed out that the government would be donating assistive technologies to deafblind persons because they know that without them these people would take a long time to develop themselves. I am sure that The USA will soon observe some breakthrough- more that they have already had –of the deafblind community.

Reação Magazine - Since we are at the end of the year, how was 2013 for you? What are your plans for 2014?

Alex Garcia - For me, 2013 was marvelous. I lectured and coached a lot. I went to many seminars and workshops in many states in Brazil Latin America and in the world. I was the proponet of the first Public Hearing about this issue of the Brazilian History at the National Congress. Traveling to NY and participating of a historical meeting for the Human kind at the UN headquarters was a dream fulfilled. So, It was a great year. And I am waiting for 2014! I don't make predictions, I only say that I will be strong while God allows me, fighting for freedom, justice and development of all deafblind persons.

Reação Magazine - You can use this moment to say some special words to the readers of Reação Magazine

Alex Garcia - My actions follow what Luther King Jr. taught us when he said: "Cowardness asks: Is it safe? Convenience asks: Is it political? Vanity asks: Is it popular? However, conscience asks: Is it correct? And there comes a time when a position must be taken, a position which is neither safe nor political nor popular, but which must be taken because it is the correct one". Then, I take the correct position!