by Tania Morales, New York City
When a country struggles for independence, its people fight for their rights and freedom. My fight for independence is from all the people who want to help me because I'm disabled. Sadly, I fight with family to make them understand my need to be more independent. I can't be—and I don't want to be—depending on everyone around me all the time.
I have Frederick's Ataxia, which is a genetic disease (I was born with it). As the disease develops, it makes walking, speech and hand control more difficult. I was diagnosed five years ago and I started using a wheelchair about four years ago.
I'm still trying to deal with having this disease. It hurts me that I can't move around and do things like I used to do. Until I was 13, I had fun with my friends, running around, racing bikes and dancing. But ataxia affects the nerves and muscles and makes it hard to walk. My handwriting and speech aren't as steady as they used to be, either.
Since there's no cure or treatment to stop this disease, I'll have to live with it until I die and it is going to get worse with time. So it's important to me to be able to control my life now, while I can.
Don't Want to Be a Bother
I need to be independent to be able to survive in this world and also just to feel normal. I want to be like other teens. That includes doing things on my own, away from my family and other adults looking after me. Being independent allows me to not even think of myself as disabled.
I don't like asking for help because I don't like to bother people. At home I'm usually asking someone to pass me things I need, like my notebooks or something to drink or eat.
I live on the second floor of a house and if I want to go out, I have to ask someone to take me down because I can't do it on my own. I have to be carried up or down the stairs on my sisters' or brothers' backs because there isn't an elevator.
I told my family that it would be better if we found a more accessible apartment or house so that I wouldn't have to bother them. But they tell me we can't move now, and say, "Helping you is not a bother."
I say to myself, "Yes it is," because sometimes when I ask for something, I have to wait five minutes or more until they can stop what they're doing to get what I need. And I can't be easy to carry now that I'm adult-sized. Constantly asking for help makes me frustrated and sad because I remember that I was once able to do what I wanted by myself.
Me and My Shadow
Most of the time, if I want to go somewhere other than school, I have to ask someone, like my mom or sister, to drive me. Sometimes I take the Access-A-Ride, which is a van that takes you door-to-door anywhere you want to go within the New York City area. The "cheese bus" (yellow school bus) takes me back and forth from school.
At Brooklyn International HS, I'm supposed to have a "para" with me all the time. A para is a person who is paid by the government to take care of disabled kids at school. This person is supposed to take notes for me, push me around school and help me go to the bathroom.
I'm glad to have help when I need it, but it's really annoying to have someone next to me all the time in school even though I'm still able to do most of the school work by myself. When the para is with me, I can't have a private conversation with my friends or go off with them down the hall.
Sometimes there isn't a para available. It's really cool because I can have fun and talk with my friends without an adult hanging around. And the other students love to take me around.
Reaching for the Stars
I want to do things like other teens. Growing up, I wanted to be a dancer or an astronomer. When I got sick, I had to stop dancing, but I still follow astronomy.
In the summer of 2003, I applied for the American Museum of Natural History's astronomy program for teens. When I got the acceptance letter, I was so happy. I only thought of going there and meeting other teens with the same passion as me.
But about a week before the program started, my mom said, "I will go with you and make sure that you are going to be in good hands."
"Mom, you can't go with me!" I said, but she insisted. She went with me on the Access-A-Ride and stayed the entire day. I was so angry because I wanted to go there by myself to show that even though I was in a wheelchair, I could do it.
Fun on My Own
Afterward I argued with her. "You're not giving me the space and the responsibility of growing up," I said, and I kept repeating my point of view. I was so happy when, two weeks into the program, I convinced her to let me go by myself on the Access-a-Ride.
When I was with my mom, no one else in the program got near me. But on my own I had so much fun, because everyone wanted to push me. It was different from family or a paid para pushing me because they were my age and it was all part of having fun.
But the Access-A-Ride came to pick me up from the museum nearly an hour late, and my mom was so worried that she came with me the next day.
I tried arguing again. "Mom! You can't go with me," I said. "The program is for me. How would you know what's good for me if you are not me? I can take care of myself!"
I explained, "That one day you let me go by myself, I really enjoyed it. I want to have another day like that." I told her I really wanted to taste independence. But no‹even though she didn't go with me, she sent my sister or my nephew to take care of me.
'I'll Go With You'
So I knew I'd have another battle when my school sent me to an internship last February.
I informed Mom that I was going to have two internships, one at the Prospect Park Zoo and another one here at New Youth Connections magazine. Since I was still doing the museum's astronomy program, I was going to travel a lot.
Sure enough, she said "I'll go with you."
I rolled my eyes. "I want to go alone," I said. We argued about it for days. I understood that she was worried. In addition to her usual concerns, I had just had surgery and she didn't want me to overwork.
Mapping Out My Route
But by the time the internships started, I had convinced her that I could go by myself. I told her how I was going to get there and she bought me a cell phone so I could call her and tell her where I was and that I was OK.
At first I used Access-A-Ride. But since New Youth Connections is in Manhattan, like the museum, I thought that I could take a regular MTA bus to go from there to the museum.
I spent a good afternoon looking through bus maps over the Internet for the easiest way to get to the museum. I figured out how to take the M20 around the corner from the office, then transfer at 42nd St. to the M10. Or sometimes I'd go to 33rd St. and take the M10.
It felt so cool taking the bus to the museum by myself. I felt free and able to do anything I wanted. I felt like I was just another normal teen and even forgot about being sick. It was fun to be on my own and be a part of the city, seeing so many people shopping, getting out of work or just hanging around.
Rolling Through Puddles
It hasn't always been easy getting around by myself, especially if it is snowing or raining. Crossing streets can be a little difficult when the streets aren't in good shape or are under construction. Sometimes the wheels get really cold and they freeze my hands. Sometimes I've got to roll through puddles on the street corners. But usually there is a police officer or someone else who helps me go across.
Now I've learned to use the MTA buses to get around the city. I look online for the MTA bus map to find which bus to take, where to stop or transfer from bus to bus and which streets I have to cross. When I've found the easiest way possible to get to a place, I have to explain it to my mom and family. Sometimes they let me go.
But I've had a lot of arguments with my mom and family about taking the city buses by myself and crossing streets. When they don't let me go, I have to cancel my plans and stay home.
I know my mom worries about me. I love her very much and it hurts when we argue. But she doesn't understand that I need to be independent and that it feels like a burden to have everyone worrying about me. I know what I'm doing and I know I can do it.
Principal on My Side
One of the most difficult battles I've had for independence concerned the para. This fall, I decided that I didn't want a para with me. But I had to convince both my family and my school's principal that I'd be fine without one.
The principal was the easy part. It turned out that she thought it was a great idea for me to become more independent. But she also knew that my mom wouldn't want me to be without the para.
It was up to me to convince my mom. I started off by telling her, "Having the para is a waste of government money, because I don't really need one." I could tell from Mom's face how she felt about that.
"I don't want you to be alone in school," Mom said. She feared that something bad could happen to me while I went from class to class and wanted someone with me all the time because I'd only been wheeling myself in the wheelchair for a year or so.
I'm Getting Arm Muscles
I talked and talked to my mom. I even cried because I felt hurt that she didn't trust my strength. Even worse, I feared that maybe she was hiding something from me, like additional problems with my health. The thought that I could never do things or go places myself again was destroying the little light I had.
Eventually, my mother said that I could try not having a para at school, but that if I couldn't handle things myself, I'd have to have one again. I was glad to have gotten my way, but sad about all the arguments.
For the moment, I don't have a para at school. It feels wonderful to be able to play and hang out with my friends. Pushing myself in school is a form of physical therapy, too, because I work out with my hands. My arms are still getting used to pushing with a lot of force, but it's good exercise and I'm getting arm muscles!
Now I want to go out of state for college. My mom is like, "I'll go with you!" But she says it jokingly. She believes I'm able to do things. Even though she is afraid, I think she knows I'll be OK. I've been able to succeed at everything I've been through one way or another. I have discovered that the world is full of adventures, and to enjoy them, the first step was to fight for my independence.
Reprinted with the generous permission of Youth Communication. Youth Communication trains teens in journalism and related skills; publishes magazines, books and other materials written and illustrated by young people; encourages teens and the adults who work with them to use its publications to stimulate reading, writing, discussion, and reflection. This essay first appeared in one of Youth Communication's two magazines, New Youth Connections, founded in 1980 with a readership of 200,000 in New York City.