My Experience Growing Up With Cerebral Palsy in China
This story was written by the contributor’s son and is published with permission. From his mom: “This story was written by my son Eliott Hu, at that time aged 10. Eliott was born and raised in China until we moved to the US just before he turned 11. Eliott is a very active and sporty boy and loves to be included in all the activities his friends take part in. His story highlights the lack of awareness of cerebral palsy in China. Sadly, many kids with CP in China are confined at home or orphanages. Eliott is very fortunate to be able to attend a private school, but even there the awareness is seriously lacking. Eliott is passionate about educating people on cerebral palsy. He requested to have his orthotics in full view for the magazine’s cover shoot.”
My introduction to this world was a special one. Two months prior to the scheduled date of my arrival, I was released prematurely in front of many white-coated people. People whom I would have to get used to. Prematurity made me small, light and unable to grow well; therefore I was put in an incubator and had to be fed a special milk formula to help me grow at a regular rate. I was too weak to even take milk by myself. My taste buds were not ignited until I was over 1 month old since tubes through my nose delivered milk straight to my stomach.
I was a happy baby but my mum always noticed something different about me. I couldn’t sit, crawl or stand. At 10 months she was hit with reality. A doctor and a brain scan confirmed the words she did not want to hear. I have cerebral palsy. Cerebral palsy is a lifelong neurological condition that affects a person’s way of moving. My form of cerebral palsy is diplegia, which means I am affected mostly in my two legs. However, my entire body is affected in some way.
From the age of 1, I visited white coats frequently: doctors, nurses, therapists, psychologists, orthotists. They assessed me, helped me get stronger and help me learn how to move and walk. What comes naturally to other kids had to be taught to me, such as rolling, crawling, walking and climbing stairs. Despite all of that, surgery seemed in order. Half asleep I was wheeled into a room full of lights, sounds and worst of all, white coats. After what seemed like days of dreaming there were months of re-learning what I thought I already knew — walking.
Fortunately, my academic opportunities were not damaged. After rejection by several schools in Beijing, my school accepted me – a wibbly wobbly 4-year-old. At school, I can learn and work with my peers with very little help. The best thing I like about school is that I get to work with my mates and be treated like others.
Sports has always been my thing and my school has encouraged and allowed me to develop this passion. Participation in sports and games has kept me going.
Teachers include me in all activities as long as they feel it’s safe. But sometimes there are activities I am simply left out off, and that makes me sad. Frustration floods through my veins when the activities could be modified to include me, but instead I have to sit on the sidelines. One memorable event was when I traveled to another city to represent my school in a football tournament. My teachers recognized my love and knowledge for the beautiful game and invited me. They even asked me to help coach the other kids. I was thrilled I could contribute.
Some people wished they got some of the special treatment I get. Some school kids tell me I’m lucky I don’t have to cross the bridge to get to the car park because I have a shortcut to school. But this is hardly luck. Being different is a pain. My challenges are everywhere from school to shopping malls, from parks to planes. Surprisingly the biggest challenges are not physical but mental. People talk as if I’m an alien, thinking the “alien” can’t see them. Whispers behind my back, questions as if I hadn’t heard them before. The struggle to the top of the stairs is nothing like the struggle to walk through the streets of my birth city. Even at school some new mates ask “why are you like that?” and some even tease me. Sometimes when people look at me, I don’t know if they are just glancing at me or looking at “what I am.”
Survival in this obstacle course has given me values I may not have ever developed otherwise: strength, empathy, humbleness, optimism and a silly sense of humor. You might not see a six-pack on the outside, but it’s held inside. I have the mental strength to battle the negatives. Through my eyes, I step into the shoes of others and feel their stories. Picking myself up from my falls and struggles, I move forward. I live every day knowing I can improve and a sense of humor keeps the laughter in me. I wish I could share this laughter and optimism with other children like me.
Out of every 1,000 babies born, two will have cerebral palsy (CP). With over 1,500 students in my school, there should be three kids with CP in our school, yet there is only me. In my past seven years in China, I have only seen four kids with disabilities out in public. Why? Well many parents in China think having a child with a disability is something to be ashamed of. Many believe if they have a baby with a disability, they are cursed.
In the hospitals and programs I attend, I have met many kids with very severe disabilities. Many schools don’t accept these children as pupils; therefore children are often abandoned or looked after by their grandparents.
At school and at home I am given opportunities just like everyone else. I learn a lot of subjects, and get to try many new and amazing experiences. Sadly, opportunities do not go to the “other mes” in China like they come to me. I have a voice; I have opinions. I am very fortunate.
I hope in the future the two in 1000 children like me will be out with the rest of the public enjoying this beautiful city. I believe there is nothing to be embarrassed about, and the public have a lot to learn about us.
Would I change my life and do I wish I was different, or the same as everyone else? Sure, sometimes I wish I could keep up with my friends, run without falling or not get stared at in public. But no, I know if I didn’t have cerebral palsy, I would be a totally different person with different skills and hobbies, and a different character. I would not have met all the wonderful people I have met, including the white coats. I wouldn’t change a thing about me.