Here’s the personal story of Ula, who has challenges due to cerebral palsy as well as the normal ups and downs common to many people with and without disabilities. Her secret to living a life without limits? Taking care of herself and pursuing the things that make her happy, rather than focusing on other’s expectations.
My name is Ula, I’m 34 years old and I have mild cerebral palsy
My mother was pregnant with me when she came to Canada from Laos. I was born with the umbilical cord wrapped around my neck and was pronounced dead for 5 minutes.
My parents, whom I love very much, kind of wrote me off. They thought that they would be stuck caring for me until one of us dies. They were fresh off the boat from Asia when my mother gave birth to me. So they had a lot on their plate just adjusting to life in Canada with my grandparents and my brother.
I have tremors all though my body and speech impediment for which I took speech and physical therapy. When I was a teenager I felt that I was “too cool for school” and quit therapy because it was boring. It was one of my regrets in life. I didn’t see the value of therapy until it was too late.
When I was 17 years old I wanted my driver’s license. It took me almost a year to convince my parents to teach me to drive and another few years before I decided to take my test. I failed my first time but passed the second time. I remember coming home and telling my parents I got my driver license, my parents and I started to cry. They were tears of joy and shock. It was one of my proudest moments. I did not think I was capable of getting my driver’s license because of my uncontrollable tremors. Surprisingly my tremors did not play a part in the way I drove.
I attended college for three years studying human services and Fetal Alcohol Spectrum Disorder (FASD) support work. I received assistance from an employment service for people with disabilities, which found me a job at the YMCA starting in a preschool summer day camp. I have been there for eleven years now working at a youth shelter as a counselor.
I was 26 when I met William, the love of my life, and we married three years later. We have travelled the world together. William is musician and a professional artist and no, he does not have a disability. When we were dating we bought a karaoke machine, which we used almost every day for six months. One day William told me: “Babe you’re a good singer and have a beautiful voice. All I can think is “okay no I don’t, did you forget that I have CP and a speech impediment?” After we got married we decided to take singing lessons together. Our voice coach, Cesar Aguilar, trained us in classical and in opera.
“Working with Ula was a wonderful rewarding experience. The lessons we had with her and her husband Will were always filled not only with singing but also with laughter and joy,” says my voice coach. “Ula always showed up to lessons with a great attitude and ready to have fun and learn new songs. Although sometimes overwhelmed by some of the songs or vocal and breathing exercises I gave her she always put her best foot forward and tried everything I asked. She was always aware of her speech impediment although it never interfered with her ability to sing.”
I asked my musician husband to teach me guitar and he suggested trying the ukulele because it’s small and only has four strings. I have been playing for four years now. I have always liked music and knew I had an aptitude for it. Someday in the near future I could see myself preforming live. I want to start a band with other women with disabilities.
For me, having CP means I am committed to self-care everyday. My life is structure; I wake up, do yoga, I go to the gym, play ukulele, and visit my grandparents. I do this everyday before going to work in the evening. I have to take care of myself physically and mentally. Taking care of myself gives me confidence and that confidence curbs my tremors.
I think there is always going to be a part of me that is bitter and jealous toward people that don’t have disability. I do have dark days. I think I don’t mind having cp. I think it helped shape who I am today; I like who I am. However I sometimes wish that people would just keep their thoughts and question to themselves. I don’t know how many times I get of accused of being drunk when I’m in public. There was one time I went to a grocery store. Three cashiers followed me out and tried to block me from getting in the car because they though I was intoxicated and threatened to call the police. I had to explain to them that I have disability. I was humiliated and angry I spent hours and hours crying. I get weird looks and I hear whispers – “why does she talk that way.”
But, it is hard to picture my life without CP. What kind of career path would I’ve had taken? What kind of a relationship would I have with my friends and family? Would I be in the popular crowd like my siblings? Cerebral palsy or not, everybody has limitations. These limitations are determined by the body and mind and not by other people. It’s up to me and you to test those limitations to the best of our abilities.