AGAPASM
Alex Garcia - A Gaúcho and Brazilian Deafblind
Deafblind Brasilian.
"For some deafblind, their development will actually have a beginning and for others, a fast development will only happen when monopoly and monopolized people are extinct. The we, deeafblind people, will have the right of being the "starting point", not the "ending" and in fact and not obscurely, being respected".
Alex Garcia
Alex Garcia was born in 1976, in the city of Santa Rosa, in the state of Rio Grande do Sul, with a rare syndrome whose characteristics include progressive deafblindness, apart from other disabilities. He went to regular schools and at this time he already faced many difficulties, but with his family support he finished his studies and went to university. He has a degree in Special Education by the Federal University of Santa Maria (UFSM), in the State of Rio Grande do Sul. He took a Post Graduation course in Special Education, as a Latu Sensu course, also at UFSM. He worked as the Head of the Unit for people with multiple disabilities and as the coordinator of the Deafblind nucleus at FADERS - Foundation of Articulation and Development of Public Policies for People with Disabilities and People with High Abilities of the state government of Rio Grande do Sul.
Alex developed a field research work to localize deafblind people in his state, promoting an educational guidance to their families and to some future teachers, preparing them to deal with deafblind students in their city of origin.
Nowadays, Alex is the Founder President of AGAPASM (Gaúcha Association of the Parents and Friends of Deafblind and People with Multiple Disabilities), which has a national and an international performance, using the computer as a resource.
Alex Garcia doesn't intimidate himself because of his physical disabilities and he continues his guidance work to professionals, He teaches at training courses and he keeps searching and improving himself on the knowledge about deafblindness and multiple disabilities, activities which are entirely developed in a voluntary way. He has always done a work of articulation with many
professionals, deafblind and their families, trying to find solutions to the special needs of the target population. With AGAPASM, Alex got more strength for his job. The Association has a growing number of participants. He continuously struggles since he was at school and more emphatically now, so that people with disabilities can be respected and considered a citzen as any other person, with the same rights and duties.
Alex has never asked for special treatment but he has never accepted that himself or any other person with disabilities weren't considerated. Whenever Alex hears from a person with disabilities who was disrespected or suffered any kind of embarrassment, he defends this person.
His performance has never considered the fear of losing privileges or displeasing whoever that was. On the contrary, Alex brought forward discussions for the rights of people who are discriminated even if he was this person. The most emphatic performance with people with disabilities has been to give them some autonomy, not allowing people to interfere in the decisions made by people with disabilities (even though this interferance is an attempt of helping) and not allowing people to prevent people with disabilities from doing what they want and from being autonomous and independent. Alex says: "The real fight for Human Rights is in the identification and in the real confrontation and in the negation of the rights of people with disabilities"
Some of his unheard-of performances: since 2004, for the first time in Brazil, Alex has structured a home care work with the families of deafblind people to give them information and educational guidance, medical and social referrals. He has prepared professionals to deal with deafblind people in their cities, adapting some special places and programmes in regular and special schools.
Other participations: Alex has participated in meetings for decisions about Public Policies for people with disabilities; participations in national and international congresses as a speaker.
Alex is the first Brazilian deafblind person who has been at University and he is a pioneer because he developed the first field research about Deafblindness in Brazil, including all the state of Rio Grande do Sul. He's the founder of
AGAPASM (Gaúcha Association of the Parents and Friends of Deafblind and People with Multiple Disabilities), the first association in Rio Grande do Sul with clear goals.
Forward, there is an article that was published in Portuguese on the website "SENTIDOS" (www.sentidos.com.br) about Alex Garcia and his work, whose tittle is "Alex Garcia: more than a life example"
Alex Garcia: more than a life example
Article written by Leandra Migotto Certeza and Adriana Perri for the website "SENTIDOS" and posted in the site on August, 23rd, 2001)
Alex Garcia is a very special gaúcho. He's a citzen and a person with multiple disabilities and, above all, he's a real life example. He questions ethically and professionally the society in which he lives in and the process of social inclusion in his country. Alex fights for justice and for dignity to exercise his rights in a real democracy. He's a specialist in Special Education by the Federal University of Santa Maria (UFSM), in Rio Grande do Sul. In the first contact with Alex, he said something which drew our attention and that is worth checking: "As Deafblindness is seen today, it's also considered a deafblind person someone who has any kind of loss of hearing and loss of sight, even though these are slight losses" Slight losses, which are frequent, are also great barriers for someone's development and for a graduation course.
Alex says:
"The question is that those people don't see things like this. In other words, it seems that those people forgot their past, their long way to be where they are now. I can't do this once I'm an educator. I have severe hearing and sight losses that every day make me think and remember everything I went through, everything I learned and I didn't learn in my life. It would be very easy for me if I said: ' I won and I'm going to work just for me, I'll try to get some money using my abilities'. But I became an educator worried about the future of people with disabilities and I can't think only about me. This is my justice"
Alex decided to graduate in Special Education and now he has decided to take a
post graduation degree in Special Education because he believes that people with disabilities, because he believes that things can be different one day.
Alex says with emotion: "Many people say I want to change the world, That I'' always the defensor of weak and oppressed people. I know this... I'm an idealist, I want to help to change the world and I'll be the one who will fight with all my strength against injustices, exploration, prejudice, in short, wherever there is a problem I can be talking about freedom, equality, dignity...hope. Maybe these are the things we still don't have."
To all deafblind people who are still facing the process of social inclusion and rehabilitation with many difficulties, Alex gives some tips: "I'd like to say to all deafblind people that we can't give up fighting for our existance, in spite of our problems. Although our world is almost or completely soundless and without light, somewhere there will be air to breathe and to keep us alive."
Quick answers:
Name: Alex Garcia
Age: 32
Marital Status: single
Profession: Specialist in Special Education
Place where you live in: Sâo Luiz Gonzaga/Rio Grande do Sul (Brazil)
Favourite sport: soccer
Political position: freedom
What you like doing in your free time: to rest
Places where you often go: my mind
Professional projects: to create possibilities, victories, future, success,
Your biggest dream: it's living in a more human world
Prejudice is...: the starting point for great personal changings
What's missing to make us live in an inclusive and more human society? Freedom, respect for differences, possibilities, people who can be "mirrors", in other words, people who can transmit truth and above all, conquests.
His history of life: causes, age and how he faced deafblindness
Alex tells us about all the difficulties he faced and keeps facing today:
"My problems started when I was 1 year old. My parents noticed that I didn't have any kind of reaction like walking or speaking. They also noticed that my head seemed to be increasing. The medical diagnosis came as a bomb: Osteogenesis Imperfecta and advanced Hydrocephalus. My mother has never forgotten what the doctors said: 'Your son may never speak, walk or develop his intelligence'. In spite of all this, I went on a surgery to get a peritoneal derivation valve. When I was 4, I had already been through 4 surgeries to correct the valve. I still didn't walk and I only spoke few words but my parents noticed that I could understand everything that was happening around me. Then something which seemed impossible started to happen: When I was 5, I started slowly to walk and I
continued improving it.
When everybody noticed, I could walk almost normally. I was about to start preschool when my parents realized that my feet were completely bandy. The diagnosis was: congenital bandy feet. Another surgery on my feet. Today my feet are still bandy but at least they are firmer than before. I started Preschool. At this moment, when I could walk and stand, Osteogenesis strongly appeared. Any kind of careless movement and I had another fracture. There were about 40 fractures until today. 30 of them happened until I was 17 years old. When I was about 10, the visual and aural problems started.
When I was 15 I could only see with my right eye and I could only hear with my right ear with a hearing-aid. Besides the fracture, I went on 16 surgeries to try to correct some muscles and nerves that were often torn. Going on surgeries to repair my bones was never something which I enjoyed. Every time I break a bone I have to try to fix with plaster cast because if I had to go on a surgery each time I break a bone, my head wouldn't support a lot of anesthetic and I would run the risk of losing the best thing I have, the thing that really works which is my mind. Surgeries to correct eyes and ears are also very difficult so since I was born I was guided to quickly adapt myself to the new circunstances, as phisically as emotionally.
Maybe it's because of that I have this condition of values and personality
today. I have learned and I continue learning to constantly face life because I'm not completely blind, although the sight losses are progressive. Things which were my past are not my present and things which are my present may not be my hearing and sight future and as a consequence, the future of my existance.
About the relations that happened between my conditions and society I can say that they were marked my great cruelties. I'm really sorry because I have never got a job that could at least help me to survive by myself, although I proved many times that I am intelligent I knew more than those people who humiliated me.
For many times I was explored, some people were only by my side when I could help them or teach them and I can say that these situations happened many times. After getting what they wanted, those people simply disappeared. I worked and I keep working as a volunteer, always waiting for na opportunity but unfortunately I think that this opportunity is far from me. Society knows that I can give my
life to show something meaningful to a person with disabilities, so I'm always called for this job but as a volunteer. In other words, some people are paid to construct possibilities only destroy these chances and then I come to organize
things."
Family support and faced difficulties
"At the beginning the people who suffered more where my parents. They were young, my father was 19 years old and my mother was 18 when I was born. We lived in the countryside of Rio Grande do Sul with few resources. My father was a truck driver and my mother was a housewife.
Everything they had was lost, absolutely everything. They sold everything they had to pay my treatments. These treatments were extremely expensive, especially the surgeries to put the valve and the valve itself. All the surgeries I went on were extremely expensive. We had to pay the doctor, the anesthetic (generally, these professionals charge the triple because the anesthetic risks in my surgeries are high) and the hospital.
In the old days we had the INAMPS (a public health service) that covered some
costs but only partially and a very small part of the costs. Generally the treatments are expensive because there is always someone earning money because of other people's pains."
The experience of a deafblind person: the degree in Special Education and all the discrimination suffered to study
"I can guarantee to you that everything I went through wasn't easy. Difficulties started by the most logical problem. Not hearing or seeing clearly sometimes can be unbearable. Many people think that only total losses can bring heavy complications but it's completely the opposite. Losses of any kind of intensity can be more painful than total losses and they have also to be considered highly relative, especially in a psychosocial point of view. Only talking about my studies, how I got it, what kind of problems I faced, it would be to rule out my past and all my development as a person. I can't only see the results and forget all the way I took because during this trajectory I learned many skills that were useful when I was at university. Here I'll point out everything I've learned with my parents and with my own life. The first order would be to never give up.
It doesn't matter how difficult things are. Giving up would be to put my guns down before fighting. I might lose the battle but not before fighting. The second order would be to stand firm, to hold your head up besides the prejudice words and looks. I remember very well many times when I came back from school, crying, and my mother asking me about what had happened. My answer was always the same: 'people look at me and laugh at me...'. Then my mother used to hold me and to say that many people would laugh, look, point and would leave me. She used to say that people were like this, the world was like this but I had to stand firm all the way, all the fight.
The third order would be to learn to make mistakes. Many times I couldn't pay attention in class or listen to the teacher or copy the subjects because i couldn't see nor hear clearly. I had to learn everything by myself in order to have a better development and learning by myself meant to first make mistakes and then to do things right. Doing this I could study and graduate in Special Education, always having those three orders as my mojo. I had many difficulties at university but I believe that the most remarkable one was the lack of
appreciation, consideration and respect to my differences from my classmates as well from my teachers. Of course that I knew that most of these difficulties were natural because I was the first person with disabilities to get at the Special Education Course in all history.
Although it was a course to prepare professionals to deal with people with disabilities, the structure of the course wasn't prepared to have a student like me. But time went by and sometimes I had to fight and other times I had to assimilate the differences between me and the people and between the people themselves. I never gave up, I stood firm and I made a lot of mistakes and so I could get over my obstacles and I'm still getting over them"
The inclusion and all barriers for a deafblind person
"In my city, as well as in the majority of the cities in Rio Grande do Sul and in Brazil, the process of inclusion that is being proposed and as it is being proposed is generating some confusion and we have to be careful to avoid that this 'bomb' doesn't explode once more on the hands of people with disabilities. I believe that to talk about an inclusive education for deafblind people, at first we have to point out two specific questions: what inclusive education is and if it satisfies the necessities of deafblind people. We know that inclusive education means that the system has to adapt itself to each person's peculiarities and we know that it doesn't happen. Therefore, theoretically, the more specific and problematical is the condition presented by a deafblind person, the more friction it will cause to the modification of the operative system. Besides this, there are the characteristics of some deafblind people.
Some of them have sufficient comprehension skills and as a consequence, skills of interaction with the surrounding world: for these people, the system can be modified with some intelligence and common sense, causing little friction. Although, to those deafblind people who have a high level of commitment, the ones who are immersed in a world of isolation which can verge some primitive characteristics. For them, it's a fact that the inclusive education, as it's proposed today, doesn't exist. But why do I speak about inclusive education as it's proposed today? Why do many intellectuals only consider that an inclusive education only can happen within the group and the school class? Sincerely I don't believe in instances so distant as the participation of a deafblind person
in a school class, especially the most damaged ones.
So I point out why in many of my performances as an educator in the state of Rio Grande do Sul, I have faced many deafblind people with primitive development characteristics, closed in their rooms, living a kind of life that even they don't know they belong to. With a lot of dedication, we could withdraw a deafblind person from cubicles where he lived. His mother could hold him on her arms once more in the last 10 years; his brothers could meet him and could understand that the thing which was closed in that room was a person. So, in a first moment, we have to work in this inclusion: the family inclusion.