“I have more confidence to keep on living and never give up” Alexander Arcani Mamani Blind and Deaf

Alexander is 18 years old and will be 19 August 5, 2008, he remembers that at age thirteen he went blind, and at age fifteen he had a notable loss of hearing, admitting this to be his fault, this is how his story begins, “I didn’t take care of my eyes, I worked with my dad since I was a small kid with a lot of building materials, like cement that would go in my eyes” “I was also loosing my hearing, this also, was my fault because I had bad friends who threw a firecracker near my ears and it exploded and that minute I heard a loud ring and I couldn’t hear after that, since that moment I became a person with disability, I felt very sad because I couldn’t learn anything, my mom would pick up after me in my room, she would bring my food, I was worthless, I didn’t leave my house for more than a year, I was so afraid!” “Until one day someone came to me and said that I could be taught, I could keep on studying and go back to school to learn even as a person with a disability” Acceptance Who was that person who came looking for you? “First my dad went down to the city of La Paz, I live in El Alto. He read a paper which said that blind people could get insurance and a social security payment, so I was registered in “Instituto Boliviano de la Ceguera (Bolivian Instituted for Blind People)” as a blind person, and there another person sent me to Sense International, where they work with blind and deaf people. This institution is helping me because they teach me and they help me with funds for transportation to and from school”. “In this country there are few people who are both blind and deaf. I meet very few, for example Mr. Fernando, which has no hands and is blind and deaf, he graduated from school and attends University, he said I was going to make it, with those words of encouragement I felt very content and I know we, blind and deaf people, can learn. At this moment I study, I can serve myself my own food, I clean my room, wash my shoes, ect. I can even help my mom wash the clothes”. Education Are you studying now? “Yes I am, the center where I study is “Aprecia La Paz”,and it is free! I work with blind and deaf people, I learned how to write in brail, that was a little hard but I did it!” “When I was in 5th grade I lost my vision, I wanted to keep on going to regular school but I couldn’t t see the black board any longer, I would get close to it to be able to read what it had written on it, and my classmates never knew what was happening to me, in this way I finished that grade, after that I had to pass to 6th grade, but I could no longer see, and I was afraid to go back. I didn’t want my friends laughing at me, I didn’t want to keep on going, I was very sad”. “I’m also in CEMA (Education Center for Adults), my school is called “Liceo Francia”, and I attend from Monday though Thursday from 19hrs to 21hrs, Its very far away from my Center Aprecia, I have to go from one side of the city to the other”. “At school I hardly have any problems, my teacher dictates all the subject and I write down notes, sometimes its difficult to hear because my teacher speaks in a low voice,

I always have to ask for her to please speak louder, but she always does and there is no discrimination, they treat me well”. “Thanks to Aprecia, I attend a regular school, they told me that I can study, that I’m already ready, “you have done everything you can here, there is nothing left for you to do, you have to attend a regular school”, my director is so nice, she’s always encouraging me, I have learned more than just a blind person. At first I felt I was never going to write, I thought I was never going to be able to read but my teacher said to me here the word “I CANT” doesn’t exist! Here everyone can make it, you’re going to be able to do it, don’t feel sad, it’s a long way, but you will succeed. And after a month I learned to read in Brail, everyone envied me! “I read and write master than my classmates and I’m admired for that! There’s no one who reads or writes so fast. It’s all up to you and how responsible you are, whatever you want to learn, you learn. I did everything in my power to be able to read and memorize, they told me that in one year I was going to advance the double, I have to take advantage of that! This is why I am in school. Are there books in Braille to support your studies? It’s such a shame! There are not many books in braille, there is a little library in Aprecia, which has books on Bolivian literature and other topics, I love to read and I have read almost all of the books there. In my program there is a computer, so we take classes once a week and I would like to learn more than just the basics. Access and transport During the interview, the subject of accessibility and transport came up so we decided to ask him about his how he gets around in his daily life and he told us: It was difficult to move from one place to another in the streets the first months of 2007; I would crash into people or the sidewalk, because I had not learned how to walk in this situation. I would run into the merchants who sold in the streets, or people who would walk in front of me, I didn’t know when they where going to stop so I would crash into them, they would get very mad but then turn around and notice that I was blind and they would apologize. Few people know that blind and deaf people carry a cane with two different colors: red and white means that we have two disabilities but if the cane is just white it means the person is just blind. I would love that people would know that!!! Have you ever fallen or got hurt? Yes!! I fell in a hole by my house, luckily I fell in standing up, if I had fallen down on my back it would have been dangerous, I was lucky. I didn’t know the hole was there, some work man had done it, I fell in at night time when there was no one there. I got out of there by myself! It was a tough experience, it really hurt me!!

Do you come down alone from El Alto? My mom helps me cross an highway that is very dangerous; there is no crosswalk or stoplights, and cars fly past!! I can’t cross it by myself, so my mom helps me and then I take a bus to my centre Aprecia. Little by little they taught me how to walk with the cane, get on buses, so now I don’t have any problems; I come and go to my house with complete confidence! I don’t get lost either; I know what bus to take. The first time I took the bus, I told the driver to let me out on street 17 in Obrajes, but he took me to 17th street in Calacoto, the driver got confused so now I repeat my stop several times when I get on the bus!! It’s all about asking people for help not to get lost, right? Health When you get sick do you have health insurance? My parents’ don’t have a salary, and none of my siblings have health insurance, just me and Limbert. I have never gone to the doctor; I don’t even know what I have. They’ve never checked my ears. My eyes yes, I went to a Cuban hospital and I was rejected twice, doctors say there is a cure but they send me from one place to another, and nothing!! Maybe there is no cure, who knows! If you haven’t gone to the doctor, who told you to use a hearing aid? Oh, I went to the speech and hearing therapist, she told me I had to use the hearing aid. I like it because I can hear many sounds, but if I don’t wear it I can’t hear anything, and then how could I learn new words? What example would I by to my teacher and classmates? I have learned various things with my hearing aid. Alex thinks that ophthalmologists and the speech and hearing therapists are not doctors; he thinks doctors only study the heart. We were informed by other sources that 2 or 3 years ago Alex was to shy, he barely talked and was very scared. Family When I asked him about his family he got nervous and started laughing, he said: “You’re going to laugh, I have 10 siblings!!, one died, and 11 of us are still living, the oldest one is Limbert, he is blind and deaf, he lives in a centre called Santa Cecilia (centre for blind adults), he studies there, we are independent, I am the third child. My dad worked in construction and my mom recycles things like bottles, ect. and sells them, with that she helps us with the daily bread. My house is small, the rooms are small, we suffered a lot the last 10 years because it was not ours, but this year we finished paying for it, now I have my own room and live very happily!! I don’t have much support from my family, my dad and mom never haven’t come this year to my centre, in 2007 my mom came twice. I think she doesn’t want to come because she feels a bit embarrassed. She sometimes goes to Limbert’s centre, but for my reunions they never come. They tell me they don’t time, and also my sibling don’t understand my successes, they just don’t go! My brother Limbert is very competitive, I think he is a little jealous of me, he’s always competing with me, and he knows I write better than he does in Braille, so he is always bothering me. He has a strong character!

Do you have friends? Not many, I don’t like having friends because in my neighborhood there are many mean boys and I’m afraid I’m going to be led in wrong directions, I’m a very respected young guy, I don’t drink alcohol! I don’t want to be bad or mean. I just have friends in my centre I get along just fine with them and my little brother. I also had a girl friend, I lost her because she went away to another country for work, she was nice and she understood me. She calls me sometimes; my sadness has gone away, because in this world there is always friendship right? What are your plans for the future? “I want to work; I want a job that’s fair for a person with disabilities. I have seen blind people work, but never a deaf blind person!! But first my dream is to graduate; I don’t want to give up. I don’t want to marry yet, I don’t want to look for a girl, I know some day it will find me, a girl who will love me for who I am. The girls now just want to be together for a little while or others want to be with me for my money or othesr just because I’m cute, they want me as an object and nothing else”. He tells us laughing

What message would you transmit to other people with disabilities? I would tell them that we should get together to fight for our rights, we have to become professionals to teach blind and deaf children. To all of those who are blind and deaf DONT EVER GIVE UP!! We have to take a step forward to achieve more! To Sense, International Service, and Aprecia, please keep on helping the people with disabilities, specially blind and deaf people like me! Interview by: Feliza Ali Ramos, Coordinator of Disability Program IS -Bolivia

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