I was born with a rare birth defect called TARSA Syndrome, which means I am missing the radius bone in my forearms. My arms were shorter because of this condition, but I never thought of myself as different. I don’t like being labeled as a "disabled" person because I feel like I can do anything I want. With the support of my parents, friends and a special program for youth with disabilities, I have learned how to fight for myself, and how to be strong.
That doesn’t mean it has been easy. I went though some bad experiences, like being picked last for baseball games (it was hard for me to catch the ball) or the way people looked at me funny when I was out in public. But mostly, people accepted me and helped me. In elementary school, the other kids would help me open my locker, pick up books or do some of the other tasks that were hard for me.
My family had come here from Poland specifically so that I could get treatment, because my country didn’t have the technology to help me. I missed some school, especially second grade, for a series of surgeries at the Los Angeles Shriners Hospital to lengthen my forearms. I had to work hard to keep up academically. Luckily, my parents were always there for me. They’d go with me and talk to the counselors about what I needed. They’d carry my books for me.
When I went to seventh grade, I had to leave behind the comfort of elementary school, where I knew everyone, and make new friends. Would I be able to find people who could see me as ME and not as someone with a disability? Every day, I would sit alone at lunchtime. I felt so shy and I guess I was expecting people to come up to me. But I made a few friends, and then we added a few more, and soon I had a group of eight friends and we had great times together.
In junior high and high school, as classes got harder, I struggled more. I noticed that the person next to me could sleep through class, and still earn average grades, while I’d have to work my butt off. I need more time to memorize things, to take notes, write or type on the computer. Luckily at Walnut High School, they allowed me to take my tests during a different class period so I could have more time. I never had to take "special ed" classes.
When I was a sophomore, I wrote an article about myself for the school newspaper, and people started asking me what my disability was like. They told me I was brave for having gone through the 15 surgeries I needed to help correct my condition. I never heard anyone say anything mean, and it felt good to help people get to know me better.
I felt less alone
But I didn’t know anyone else with a disability. That’s why it was a life-changing thing when I attended a conference for youth with disabilities the summer after my sophomore year. It was the greatest five days of my life. At the Youth Leadership Forum for Students with Disabilities, which was held in Sacramento, I met kids who were blind, in wheelchairs, couldn’t lift things, couldn’t walk, were deaf or had "invisible" disabilities like attention-deficit disorder (ADD) or bipolar disorder. I had so much respect for them. My roommate Katie was in a wheelchair, but she was on a basketball team and a volleyball team. In between the lectures and activities, we’d hang out, go swimming, go to the gym or have lunch.
It was a reality check when I heard some of the obstacles the other kids had faced. One girl in a wheelchair said her school wouldn’t put in a ramp so she could get to her classroom. It took three months for the administration to do something about it. Other youth said that even though they were supposed to get extra time to take tests, the teachers wouldn’t follow the rules. I thought it was really sad that they weren’t getting the help they needed.
The people who ran the program showed us that there are a lot of things out there for us, from job programs to scholarships. We learned about new technology, such as Braille keyboards or special keyboards with bigger letters for people who are visually impaired, and telephones and visual alarms for the deaf. We saw a jazz dance performance by two dancers, one of whom was in a wheelchair. She couldn’t walk, but the way she moved her hands and the emotions on her face were really powerful.
I had a sense of belonging. The counselors and the other kids felt like a huge family that was reuniting, even though we had never met before. I felt so satisfied that I wasn’t the only one struggling and wondering if people were judging me. I felt the power of all of us together. I could share my thoughts or experiences and I knew the others would understand.
From that amazing experience, I returned home to face new challenges: my family moved from Walnut to Saugus because of my father’s new job.
It was heart-breaking to leave behind all my friends and my classmates. In my new school, I was an alien and nobody knew where I was from. It was hard for me to meet new people because I’m not a big "Hi!" person. In the back of my head, I again wondered if my disability would put people off. I tried to assume that if they had an issue with it, they wouldn’t be talking to me. But it was hard.
Equally difficult were my tough new classes at Saugus High. My school counselor, who saw that I had gotten an A in history and a B in English at my old school, placed me in honors history and English classes. He also scheduled me for geometry, although I tried to explain that my math skills are weak because I missed so much school when I had the surgeries. I asked him if I could have an "Individualized Education Plan" (IEP), which would assess my skills and tell my teachers how to help me compensate for my disability. But my counselor said that would take some time.
I spent hours doing homework, projects and essays. Sometimes I spent two to three hours a day just on my geometry homework. I struggled to understand the equations. I also had to draw lines and circles and other shapes very precisely, because you get points off if you don’t have a 90-degree triangle. With my hands, it’s hard to draw, and no matter how hard I tried, I usually got bad grades on those assignments.
It was hard to keep up in school
I asked for extra time during the tests, because I can’t write fast and I get stressed and start blanking out. But without an Individualized Education Plan, I couldn’t get extra time. My grades dropped to Cs and Ds. I went to my counselor for help and he said, "Oh, you’re just adjusting."
Finally, in May, when the year was almost over, I was tested for my IEP, and I was allowed to use a resource classroom to do my homework, study for tests, and take tests. It was quieter there and it really helped. Although I failed math, I got solid Cs in my honors classes, which I thought was really good considering how hard those classes were. Even though I often felt like giving up during that difficult year, I kept at it. Having a disability taught me to be optimistic and just keep going.
Things got a lot better my senior year. My classes weren’t as demanding, and I got involved in tons of extracurricular activities. I got a chance to be in a play. I trained with a swim club. I helped organize the winter formal and the prom. I competed with the speech team. I’ve done things I wouldn’t have done in Walnut. I don’t think I would have had the drive. At Saugus I did, because I wanted to get out there, not mope in my room. I’m grateful for all that.
In the past, I felt sad that I had this physical problem that other people didn’t have. But I’m done being sad about my disability, and I’ve got to start embracing it. My disability is a part of me and it has made me stronger and allowed me think better of people and myself. I haven’t had as much academic success as some, but I have still been able to pursue things I love, like writing poetry, giving speeches, acting in a play and just being creative. I’ve learned that you don’t have to be Einstein; you just have to go out and do what you love most and don’t let your disability get in your way.
After I graduated, I prepared to attend the College of the Canyons in Valencia, where for the first time I was going to be fighting my own battles. I suddenly realized how much my family has helped and supported me over the years. Whether it was talking to my counselors or helping me carry my books, my parents have always been there. Would I be able to take care of things myself? It was all going to be up to me now. My parents aren’t going to take care of things as they did before.
I was worried and scared. I have had to deal with so much change, from coming to America to switching schools to having surgeries. But I told myself that I was able to accept those changes, and this change was no different. I knew that just as I made it through the surgeries and the tough times in high school, it would be all right. And now that I’m attending college classes for the first time, I’m grateful to all the people who helped me along the way.
Resources for disabled youth
• California Youth Leadership Forum for Students with Disabilities (YLF)
YLF is a program of The California Governor’s Committee on Employment of People with Disabilities. The five-day forum, which is free, is held each July for California students who have a disability and demonstrated leadership abilities.
For an application, see
• Disability Central
A Web site for youth with disabilities which includes articles, chat rooms, message boards, links.
• Protection and Advocacy, Inc., fights for the rights of Californians with disabilities.