We at beijingkids did not just want to write about special needs kids in Beijing. We had a vision to make pictures of these children, simply showing us their hobby or living out their wildest dreams. We spent a long Sunday at Dave’s magical photo studio to make these visions come true. The coordination of this day was a long and challenging journey, but we couldn’t have been more pleased with the outcome. You might think that these kids are the lucky ones to be photographed by one of the best photographers in the city, but we walked away feeling even more lucky. We got to spend beautiful one-on-one time with the six kids that make these pictures shine, and we were inspired by their loving and energetic parents. These families are the ones that gifted us with something we had never anticipated; a window into the lives of these fearless children who are constantly pushing themselves to overcome their unique challenges. Though we are different, we are also the same.
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 a happy baby but my mum always noticed something different about me. Sitting, crawling, standing, I couldn’t… At 10 months she was hit with reality. A doctor and a brain scan confirmed the words she did not want to hear. It is cerebral palsy.
Cerebral palsy is a lifelong neurological condition that affects a person’s way to move. Neurological means it’s something to do with the brain and nervous system. In this case, it is damage to the part of the brain, which controls the muscles. There are treatments but no cure. Everyone is affected to different degrees.
My form of cerebral palsy is diplegia, which means I am affected mostly in both my legs. However, my entire body is affected in some way. My condition is relatively mild since there are children who are affected severely in all parts of their bodies.
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. For instance, rolling, crawling, walking, 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 was months of re-learning what I thought I already knew, such as walking.
Fortunately, my academic opportunities were not damaged. After rejection by seve ral schools in Beijing, Dulwich College accepted me – a wibbly wobbly 4 year old.
At Dulwich, 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 the others.
Sport 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.
One memorable event was when I represented the school in the Suzhou football tournament. My teachers recognized my love and knowledge for the beautiful game and invited me. I was thrilled I could contribute.
My challenges are everywhere, from school to shopping malls, from parks to planes. Surprisingly the biggest challenges are not physical but mental. Radars track as if I’m 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. 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. Strength, empathy, humility, 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.
In every 1,000 babies born, two will have cerebral palsy (CP). With over 1,500 students at Dulwich College Beijing 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 that to have children with a disability is something to be ashamed of. Because they believe that if they have a baby with a disability, they are cursed.
I hope in the future that the two in 1000 children will be out with the rest of the public enjoying this beautiful city. I believe that there is nothing to be embarrassed about; also I believe that the public have a lot to learn about us.
Would I change my life and wish I was different or the same as everyone else? Sure, sometimes I wish that I could keep up with my friends or run without falling or not get stared at in public. But no, I know that 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.
Photo: Dave’s Studio
This article appeared on p46-51 of beijingkids March 2018 issue.