What It Was Like to Grow Up With Cerebral Palsy in the Dominican Republic

I was just 10 years old. Every weekday morning I stood by the door of the backyard looking at
the narrow street of Las Mercedes in Bani, Dominican Republic. Quietly, I observed the other kids passing by wearing their school uniforms. Sometimes they wore a yellow shirt, or a blue one with light brown pants. They carried books in their arms. I wanted to go to school with them, but I had to stay home with Mom instead.

One day, my mother told me I couldn’t attend school because of my physical limitations. That was a key moment, because I became aware that I was different from the other kids, not just physically, but also from a sociological point of view. Even when my parents wanted me to attend school, the school system wasn’t prepared to deal with a student whose body was different. I didn’t know any other children who had cerebral palsy. None of the children in my family or in my neighborhood walked or talked the way I did. My physical appearance was unique. When I was outside, people stared at me because of the way I walked.

My body didn’t have straight lines; it was curled. My feet seemed impossible to lift up from the floor as other people do when walking. My mouth was always open like the letter “U.” When I talked, I sounded drunk, even though I was not. To most people, I was like someone from another planet. Other children made fun of me because of the way I walked and talked. I tried to ignore them and pretend it didn’t bother me, even though it did. I often heard people say I was not a “normal being.”

Home was my cage, though I wasn’t forced to stay inside. My brothers and my mother’s younger sister, who was more like my older sister than my aunt, left for school at 7:30 in the morning. My dad went to work and Mom took care of the house. Every member of my family had some type of responsibility: attend school, go to work, take care of the house. Their daily routines were full, without much free time.

My daily schedule was empty. There were no major events written in my calendar. As a result, I created my own schedule, filling every empty spot by watering the plants, doing some dishes and playing by myself. There was not much I could do.

My father’s parents lived next door, and I spent the days going back and forth between both houses. Abuela, my father’s mother, was influential in the way I was raised. She was very traditional in terms of gender roles. Because I was a girl, she thought it was important for me to do housework.

In my culture, a woman should learn how to cook, wash the clothes, and clean the house, among other household duties. I helped Abuela do the dishes, water the plants, and sweep the backyard. Then I spent the rest of the day playing games, listening to the radio and watching TV. In the backyard, I looked at the sky where birds flew over the house. In my imagination, I flew with them. This was my only way to leave home for the day.

Even though I didn’t attend formal school while I was growing up, I learned how to read and write. First, I attended homeschooling, but it was a little different from what homeschooling means to most people. The sessions didn’t take place at my house, but at the teacher’s home. Ms. Mariana was a woman in her mid-60s who ran a small school at her house, which we called escuelita.

I attended escuelita for a couple of years. There were around 15 students about my age in the class, which took place in the teacher’s backyard, a few blocks from my home. The class sessions ran for a couple of hours in the afternoon, Mondays through Fridays. Ms. Mariana taught basic lessons: reading, writing and math. I did all the assignments on my own and felt a sense of belonging to the class, except when it was time for us to take a break. All the kids got up and started playing. At that moment, I became an alien again.

I remained sitting in my chair, like an outsider, while my classmates played. I didn’t want to fall and hurt myself, but I was also afraid I would not be welcome. That may have been true, because nobody else encouraged me to join in, either. I wanted to be let out of the box, but aliens are never asked to join the human race.

Besides going to the escuelita, my parents and my father’s younger brother also taught me at home. My uncle worked as a teacher in a private Catholic school, where he asked if there was a possibility for me to attend, but the administrators there refused me. My physical appearance was a strange phenomenon to the staff. They didn’t have the right tools to deal with me, because there wasn’t much information available about my condition. Also, the school wasn’t structurally accessible.

Despite all the obstacles to education I faced, I had an enormous desire to learn. Not being able to attend school didn’t stop me. I was self-motivated and wanted to keep learning regardless of the circumstances. There was a voice inside me repeating over and over, “I have to learn.” So I became my own tutor. I borrowed my brothers’ books from grammar school and started reading them. I loved learning about the natural and social sciences.

Even though Mom had explained cerebral palsy to me before, her explanation wasn’t enough. I didn’t understand why I had CP and the other kids did not. At night, as I lay down to sleep, my pillow got wet with my tears. The next morning, I would wake up pretending nothing happened. I was afraid of asking questions, because I didn’t want my family to feel sorry for me. I already had enough with the way society treated me.

Now as an adult, I am able to go back in time and reflect on my childhood. All the prejudice I experienced bears witness to the cruelty a child with a disability may face each day if their peers do not accept them. Many are being bullied. Are their parents, guardians, teachers and school staff even aware of the situation? Do these kids talk to somebody about what they are going through, or do they keep to themselves as I used to do?

I hope these kids are not going through this difficult situation on their own. I hope they are getting the support needed to deal with the prejudice, lack of knowledge and lack of resources that sadly still exists all around the world.

Juana Ortiz’s latest book “I Made It” is available at www.juanamortiz.com and on Amazon.

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