Living with my cerebral palsied twin


Optimists: Eu Kenn (left) with his twin brother.

I HOLD my twin brother beside me when we take the family picture. His head constantly drops, he slouches, and my mother instructs me to hold him more firmly.

When my father presses the camera button on his phone and immediately runs to the sofa where we have all settled in, my brother starts to smile. We all smile for the camera.

I was born just two minutes before my twin brother, Jia Kenn, but there’s a world of difference between us. My twin brother is cerebral palsied, is unable to walk, and can only converse with simple words.

During his birth, his umbilical cord was wrapped around his neck, resulting in a shortage of oxygen to his brain.

Years of growing up with him have certainly taught me to be more responsible. I have had to help my family take care of him, and I have acquired “skills” such as changing his diapers, securing him in his stroller or wheelchair, and carrying him for a few seconds in between moving him onto a bed.

Whenever we bring my brother out, I hold the lift for my father to push my brother in with the stroller. We have to ensure the wheels are always intact, and there are pillows on the stroller so my brother doesn’t get bruises. There are always endless reminders telling me that I have something to do. It’s habitual.

Moreover, my brother has perpetual spasms and occasional seizures. I hear them sometimes in my sleep, thus jolting me awake to see my parents rushing into our room.

It happens outside too. During these episodes, some people would cast worried glances our way. We take it as a warm regard; them being concerned about him.

There’s still no place I’d rather be than with my brother. Every day when I come back from school, he greets me with a broad smile and calls me “gor gor” (elder brother) until I answer him.

He is easily content with every little thing we do for him. He never fails to express his joy to us with his smiles, his arms outstretched.

When I followed my mother and my brother to his special needs school for the first time, it was an eye-opener. I met a number of differently-abled children similar to my brother and I heard some of their stories.

Why is it that the voices of the differently-abled and their families frequently get unheard? This was very curious to me even at a young age.

In the past, my family often felt upset about the eyes that darted towards us in public. At times, the cheerful feeling my brother exuded and his grins did get reciprocated.

But my brother was unfazed in these scenarios; for instance, when the extremely long queues to the lift went on forevermore, he maintained his happy expression all the way.

My brother still maintains this optimism wherever he is, and my family has since learnt to follow suit. We are pretty much tuned in, and we have fun.

I know that my experience isn’t universal but I still hope more awareness is raised. I think a prominent issue in Malaysia is ableism, such as the misuse of persons with disabilities (OKU) parking spots and people not prioritising special needs individuals when entering the lift.

We need to do more about such discrimination. Inclusivity truly can be a big building block towards a better future for differently-abled people.

Eu Kenn, 16, a student in Kuala Lumpur, is a participant of the BRATs Young Journalist Programme run by The Star’s Newspaper-in-Education (Star-NiE) team. For more information, go to facebook.com/niebrats.

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BRATs , cerebral palsy , special needs , Star-NiE

   

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