I was born in a rural area at Java. It’s a kampong with traditional muslim culture. When I was 6 years old, I asked my mom what happened with my legs, both of them were difficult to move. My mother said that it happened because of a solar eclipse in 1984 that completely enveloped my village. I doubted my mother’s explanation. I looked up at the sky to search for the cause of that darkness. Yes, there is a myth in my village said that the solar eclipse was a culprit for many troubled happenings, we called it “dipangan gerhana”, which means “eaten by the dark of the solar eclipse”.
Two years later, I asked to my Mom on this question. As mother had no formal school at all then she does not know anything about medical affairs. However, she took me to the doctor. My mother told me that the doctor got angry since my mother was late in bringing me to him. The doctor said that I had contracted the polio virus and that it was impossible for me recover. My mom told me, she cried and had no appetite for several days, but she still believed that I could be a normal person like the other boys in my village. In order to cure me of this condition, she took me to many “special people” regarded by villagers as a “dukun” (a magical practitioner), “kyai” (magical person based on Islamic religion) and various other spiritualists who were seen as having special powers.
When I was about 7 years old, most of my friends went to school, but not me. I was scared of going to school. Firstly, who would bring me there? I could not walk and the school was not accessible since people don’t thing on the importance of accessibility for people with disabilities, I did not see before person with disability getting school. Secondly, I was scared of new people who would ask me about my disability. Thirdly, I was afraid that they would insult me because of my disability. The second and the third I think were the most fundamental reason.
Finally, I went to school. My mother took me to the school next to our house building. She piggybacked me to get school every morning for almost one year. She always encouraged me with stories about the prophets. My favorite story was about “nabi ayub”, a prophet in the Islamic tradition. He had a skin disease; it was so stinky and disgusting.Due to his skin, he was being isolated by his society, but he was always being happy and believed that everything is given by God.Everything I was scared of came true. Some of my friends asked me about my disability on the first day in elementary school. They looked at me strangely, as though I was not like them. However, their attitudes changed after several days. I became one of them and they accepted me as just another kid. The teachers were wonderful, they never talked about my disability in class and they always gave me advices on how to deal with difficult life As with other schools in Indonesia, sports education is important for students. In this course, students have to play soccer, badminton, running and other sports. Due to my disability, my teacher gave me special assignments instead of sports activities. For some reasons, I enjoy this policy, but on the other hand, I felt that I was being isolated by school. It happened when I was alone in the class working on the assignments the teacher gave and all my friends were out running, jumping and hitting or kicking a ball around. I felt “I am a disabled” Elementary school was a hard time for me. My father, a peasant, passed away when I was in level three. I was 10 years old. Crying was my activity for that day. He was really important to me. He was the one who took me to the mosque, to the rice field and to many places that I wanted to visit. He took me to places children usually visited. He also really wanted me to achieve everything I wanted. I believed that whatever my father did he did it for me because of my condition.
Due to my disability, my family, particularly my brothers, frequently expressed diffidence in me and did not believe that I could get a better life. Every time I gave my reasons to pursue an education, they said discouraging things I thought was not congruent with reality. I believed that they forbade me to pursue my education they worried about how I could cope with my condition. Every time I told them my dream to get the high education, they gave many reasons why I had to stay at home. However, I always rejected their notions.
However, not all of them did this. I got what I wanted on my dream in education. That was when my mother and two of my brothers became my heroes. They believed that I could do the best for my future, and finally allowed me to go to another city to pursue my education, in an Islamic boarding school in East Java, Indonesia.
In my kampong, life was communal. When you had problems with your family, everybody would know in a week. Privacy was almost non-existent there. Your problem was the kampong’s problem. Thus, it came to be that the entire kampong wanted me to undergo vocational training such as sewing, carving and other handicrafts. Some of the villagers also wanted me to memorize the whole Koran , the holy book of islam. According to them, by memorizing koran people would call me to recite in public and get money. In my kampong where Islam is the most dominant culture, people who memorized the Koran garnered certain awe from society.
Likewise, my relatives also wanted me to memorize the Koran and did not want me to have more education. Every time I met my relatives, one question that always came up was about my education. Most of them urged me to study Koran or Islam. Shortly, after finishing elementary school, my relatives, my friends and the villagers in my kampong wanted me to memorized alquran .They wanted me to pursue my education in Islamic boarding schools. They wanted me to earn my living by reciting the Koran, which was very popular in my kampong on the time. Religion and culture really shaped how people with disabilities were treated in my kampong. The principle of communality and togetherness greatly determined the futures of people with disabilities.
Based on my experiences, Muslim in my kampong interpreted that people with disabilities are objects of charity. I remember, after my father passed away, I was always pointed out as a receiver of alms each Ramadan (fasting day). People always gave me special treats, usually expressed in giving money to me. Being given special treats was also done in school. They never thought about accessibility so that I could be independent. I was treated as one of the needy also due to my status as an orphan.
After finishing elementary school I went to the middle school next to my house building. It was an Islamic boarding school where my mom sold vegetable salads. The distance between school and home was almost nothing. I could even see my classroom from the window of my room. Things were the same for me here. Every time I met fellow schoolmates I was scared of them. However, the teachers were really nice. They did not demand of me as they did other students. I got many privileges, such as being allowed to not join sports and other activities that demanded physical strength.
In the second year of middle school, the bone in my left thigh broke. It took a year to heal and I felt utterly blue all through that time. I could not walk at all and had to resort to a crutch. Using a crutch for the first time was extremely difficult. It was a difficult time and I was really depressed. I hid myself at home I did not want to show myself to the public. Since the school was really close to my home, I could see students and other people from the school walking around my home. However, this made me even more depressed. I began to hate people. I began to hate going to school.
During that time, my mother took care of me. She tried to persuade me to go to school. However, I was still scared to go back to school even after I had had a long rest for the breaking of my thighbone. First, I was afraid that people would look at me as if I were an alien coming to Earth. Second, I was also afraid I could not follow the lessons since I had been out of school for a year. Third, I was really afraid that my friends would ask me about my disability, since they had since the beginning stared at me as if something was visibly wrong with me. Lastly, I was afraid that the teacher would ask me to come to the front of the class to write something with me on my crutch.
Then my brother came home from Jakarta. He saw my condition and got angry with me. He took me to the backyard of our home and advised me about the implications for my future. He spoke harshly and loudly and slapped me. My brother made me realize that I could not stay like this for a long. So I tried to overcome this situation. Eventually, I decided to return to school, precisely when the school board let my mom know that the final exam would be held in a week’s time. For that reason, I had to go back and sit for the final exam.
Yes, finally I was back in school, and I had an exam in a week without having followed the lessons. The teachers gave me a chance since they knew my condition. However, students looked at me weirdly, just as I had feared. I felt terrible. Because of this, I decided to come to school very early in the morning before my friends arrived and to go home only after everyone had left. I did this for almost a full year. I did it because I did not want to be questioned by my friends, I did not want to be stared at like an alien and I did not want to be insulted due to the awkward legs I had.
After the first year of middle school, I was selected as the best student in my cohort in spite of my disappearance for a year and my depression. I was thoroughly fortunate to have had a school with such generous flexibility and understanding. In the course of my days there, my friends too accepted me as normal and one of them, although there were some students who still perceived me as a weird thing.
I could conclude that it was difficult for person with disabilities in my kampong since the people were culturally homogenous. The principle of togetherness led every child to play together and being different among the children was very difficult. It also happened in the school. School was not merely a space for education but a space where people perpetuated Javanese culture.
Although there were many difficulties for people with disabilities in my kampong, people were by and large helpful in many ways, such as helping you to carry hefty loads. They also would not mock you, particularly if you were old, since they believed that people with disabilities had special powers from God . They believed that such mocking would be returned unto them. It was a cultural protection created by society; however, the culture was not strong. Children usually still considered that my disability was weird or awkward.
The interesting thing is, my family did not think to place me in a special school. They always believed that I was a part of them, However, it did not mean that they did not discriminate against me in daily life. One of my brothers did not want me present. He always treated me differently and did not acknowledge my existence. For instance, when they planned to go somewhere they never invited me to join them, they also barely asked me to join them in their other activities. This showed me that I was nothing to them.
Finally, after working hard, I overcame my difficulties in middle school. Some students in my school had private tuition for math and English. I did not, because we did not have the money to pay for it, and besides, my family did not have the habit of studying at night. A good person was defined as as one who helped one’s parents perform chores, such as washing, cleaning and working in the rice fields. School achievements were not counted. Thus it was that, despite doing splendidly in school, my family was not proud of me because I could not help them in their daily tasks.
I wanted to get higher education in college. However, my mom had no money to support me. It was a very great day for me when one of my big brothers promised me that he would support me for my college education. I worked hard to prepare getting into the best university in Indonesia. Yes, I got into everyone’s favorite university in Indonesia, Gadjah Mada University in Yogyakarta.
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Applying to Gadjah Mada University was scary for me. I was really worried about a rule in the application brochure. In every university, it is always written there: “physically and mentally healthy”. There was also a question on disability. For me, this question was weird since they did not explain its purpose. More currently, I knew from my friends that there are many schools in my university and even in the social sciences and the humanities that do not accept people with disabilities and deafness.
However, I passed the entrance process to university. I took social philosophy since philosophy was not a favorite study in Indonesia. but by choosing philosophy, it smooth me to become a student of Gadjah Mada University since I was a graduate from a pesantren who was not good in math, social science and other courses.
After succeeding in getting into university, I had more problems to deal with. Buildings and public services on campus and in Yogyakarta were not accessible to the disabled. Buses had no ramps, nor did sidewalks and other public services. Even the buildings in my university use only stairs, no elevators, ramps and other disabled-friendly facilities. Basically, accessibility for people with disabilities had not been instilled yet in peoples’ minds. The other problem is money, my brother sent me money montly to support my education however its not quite enough, I had to work to full fill my needs. I worked at book publisher as an editor, and I was a keeper of the mosque and left there for couple years.
I do remember how I had to ask people to help me every time I needed to step get to the my class on fourth floor. I do remember also that I fell down from the bus while trying to get into the bus. The lack of accessibility in transportation and in buildings really isolated me from society. I was very interested to get job, but I could apply for them because of the lack of accessible transportation to reach it. There were also study groups that I could not join due to the same reason.
This situation conditioned me to feeling “isolated” and inferior among my friends. I felt that every people looked down on me, particularly the women. I felt that not many woman become my friends and the way they looked at me was really strange. I felt really inferior to woman that I met, particularly Gadjah Mada University is the best University in Indonesia, most of the woman getting in is from middle class or smart woman. And I am not either from middle class or smart person. I felt that every time woman is getting closer to me, she took me not as a special person that should be loved but a person that should be given charity. Based on my experience, I felt that women did not perceive me as a normal person. This situation led me to force myself to read books and try to become a writer. Yes, I wrote some articles in newspapers on politics and social issues, particularly in multiculturalism and pluralism. Writing articles in newspapers not only a way for me to get money but also a way for me to become accepted by others, so that they would not look down on my anymore.
Studying philosophy was really astonishing, I really enjoyed it. I learnt much on many perspectives, which opened my mind. Many schools of thought triggered me to think broadly and become more liberal than before. I was involved in a student movement that was associated with traditional Muslim groups in Indonesia. In this group, I learnt much about social theories, particularly on critical theories that later influenced my ways of thinking greatly. Generally, after getting involved in such activities on campus, I felt enlightened with many schools of thought that placed me staunchly in the left wing Marxist camp.
Being a student in the philosophy department in Gadjah Mada University was of fundamental importance to me. It gave me life principles for whatever I should do in my future. It also allowed me to express my ideas on society and gave you a theoretical foundation to understand disability and a foundation of support to cope with my disability. Many “deconstructive ideas” such as critical theories and post-modern theories were given to me from my department and friends from the student movement I have been involved in. Those notions made me believe in me and that I had to do something for people with disabilities in Indonesia.
After graduating from the philosophy department, I decided to participate in disability movements in Indonesia. I became involved in SIGAB, a center for advocacy and inclusion of people with disability. I did many things there such as protests, assisting people with disabilities and promoting equal rights for people with disabilities and so forth. I realized that my choice was difficult since I had to deal with many people, particularly people in government, who were not well acquainted with disabilities.
Based on what I experienced, I conclude that in Indonesia, education for people with disabilities is really determined by Asian cultures, which are very communal. The concept of independent living is not ingrained in the public mind. Government is still not considering that accessibility in public space is very important. Many policies, such as those in university requirements, classify people with disabilities under “social pathology”.
About two years after graduating from Gadjah Mada University, I got scholarship from Ford Foundation to study at any university at USA on disability. Yes, I selected University of Hawaii at Manoa as I knew from website that they have a good center focusing on disability studies. Since I was based on philosophy, I took sociology as my mayor, it just smoothes me to understand what I would be learning, besides that I really love social science.
To be continued……..:D