My own experience of disability

 

My disability, My parents and my siblings, & My own family

My interest in Assistive Technology (AT) roots from my own experience. I, myself, have a disability, cerebral palsy. That affects my speech and my mobility. Nevertheless, I can tell you that I am one of the most happiest ladies in the world. I have everything (even a disability ^^), including my wonderful parents and two brothers, a nice husband, cutty two children, good friends...

History of my disability

I had to be hospitalized when I was 9 days old, because of severe jaundice. My jaundice recovered after several days, but as a side effect of the jaundice, I had cerebral palsy. My parents did not know, and even the doctors could not diagnose what it was that was preventing me from walking and talking at the age of two. I was finally diagnosed with CP, by Yonsei University Medical Center in Korea. The doctors recommended that my parents enroll and leave me at a special preschool at The Rehabilitation Hospital in Yonsei University Medical Center. My mom told me years later that my dad cried out that night when they left me at the hospital. He was very drunken, and he burst into tears as soon as he came home from work that night, and said, "Let's bring Yoosun back home right now..." I stayed at the Rehabilitation Hospital during the weekdays and came home on the weekends. My dad was very busy even on the weekends because he ran his own business at that time. However, he did not send my mom to see me alone. My mom told me that he did not miss even one weekend for two entire years, until I left the hospital. She told me that, some dads never showed up at the Rehabilitation Hospital.

My parents and my disability

Traditionally and even now, some Koreans believed to have looked at individuals with disabilities negatively, such as being stubborn, irresponsible, unsocialiezed, and incapable. Over the years, the ways of thinking about and towards individuals with disabilities in Korea has greatly changed. However, when I was young, many parents used to hide their children with disabilities from the public. My parents were very different. My parents brought me anywhere they went. They always said to me, "You can do anything. Especially if you study hard, nobody will neglect you."

When I turned eight years old, my parents had a heavy dilemma, deciding, whether I should attend a special school or a general elementary school. There was no notion of inclusion in Korea and I don't even think there was in the United States, at that time, the 70's. My current status of CP is greatly improved thanks to a relatively early intervention and consistent medical care throughout my life. However, when I was in elementary school, I often fell down while walking and my speech was much worse. Thus, my parents had to hesitate to enroll me, at general elementary school. After thinking and thinking, they decided to send me a general school for students without disabilities. Of course, I was the only student there, with a disability. They were very worried at first. However they soon realized that their decision was just right because my school life there, was very sucessful.

My parents support me in any case and they always give me a chance. They always encourage me, "You can do it!". Ironically, I give them a tremendous courage, too. They are very proud of me and they praise me anywhere. My parents says that, "I am their hope" and I give them a great energy to live. My father ran out of his business 6 years ago and he had been very hard time with it, emotionally and economically. However, he said that, "When I think about you, I can have power to recover my business." And he really recover his business now. My parents, especially my mom, catches my emotion and my situation every moment. She knows when I am likely be stuck to speak in some situation. So if she catches that moment, she tells others what I want to say instead of me. She knows my feeling only just looking at my eyes. We do not need to much talk between us.

Two brothers and my disability

I know that my parents sometimes over-care of me comparing to my two brothers, thus sometimes I feel guilty about it. At the same time, I always appreciate that they do not offend to my parents or they are not against of me. Rather, they always praise me. Moreover, they say that they are very proud of me. My older brother and I went to the same elementary school. Unlike America, few Korean schools have a school bus and my school did not have one either. My mom or dad had to drive us and then my older brother held my hands tightly, and brought me to my class. Some of his friends made fun of him because of me, but he did not care. Once my younger brother was about the age of 7, I asked him, "Do you think that I am different from other people?" He replied me, "No, not at all!!!" Even though almost 20 years has passed, I still remebered his innocent facial expression, saying "Sister, what are you talking about?"

This is very true that each member of my family gives me, a tremendous amount of strength. I do not have any idea of how I will ever be able to repay each member of my families for the love they have always given me. This is my forever-homework in my life.

My own family

My husband and my disability

Now, I have my own family, including my husband, my 4-year-old son, and my 3 month old baby girl. My husband is my roomate's cousin when I went to the undergraduate school. Many people told me, "I wish I met a good roommate like yours..." My husband and I have very different personalities than each other and we think that each other's different traits helps to balance each other out. My husband does not think about my disability in his life and he frequently does not want to listen when I talk about my disability. He believes in me. I am so lucky because God gave me my husband.

My children and my disability

My children are fantastic. My son, Habeen, is very active, smart, and adorable. My daughter, Yebeen, is also precious. Maybe now my children are too young to complain about their mom's disability. However, I sometimes worry about if my children will someday think of me as very different from other moms in the future. What if friends of my children make fun of them because of their mom? Hmm... In order for my children to not be embarrased about their mom's disability, I need to show them how much I love them, of couse, as well as always make an effort to live my life to the best of my ability for my family. I hope that my children will not have any problem with my disability. When I think about it, I intend to collect my thoughts well and have a solid plan in place for how to deal with these potential obstacles.

 

My own experience of disability | Assistive Technology | Presentation | Research | Internship & Independent study

Other professional experience | My own experience with AAC | Curiosity about other's experiences with AAC

go homeemail me at yoosunc@hotmail.com

 

My own experience with AAC Research Other professional experience Assistive Technology Internship and Independent study Presentation Curiosity about other's experiences with AAC