A disability is not a disability to a child

One of the most amazing insights that I have gained working with child is seeing how this group of little creatures adapt to misfortune.

Parents are often upset when they learn of a disability in their child. A child born without his right arm, a girl with a spinal deformity making her never being able to walk, one who has hereditary cancer of the eyes that defines her blind. Even the doctors and the nurses cannot help feeling pitiful for the kid. How is this child going to survive life, in this cruel, unforgiving world? We foresee the mountains of difficulties. The child would be looked at and treated differently. Kesian, kesian... This must have been the expression most commonly surround this child from the time he arrive in this world.

Fortunately, the child being born ignorant does not comprehend such expression. He does not realise that how others see him matter. He does not understand that it is a deficit to be born without a limb, or a sense. He simply go about exploring the world with whatever resource he has with him, and make a sense of this world. And he would find journey of exploration as enjoyable as his counterpart born 'perfect'.

S was my first teacher. He is now 18 years old. The senior paediatric orthopaedic surgeon of the team had known him since he was born and keeps a photo record of his case from the time he was a neonate till now. He showed us pictures of his legs auto-amputated from the knees while he was still in the mother's womb. As a result, his leg prosthesis have been part and parcel of his life since. Yet, there is nothing to feel sorry about for him. He is as lively as any other boys, who would sometimes test the patience of the the adults, just to see where is the line drawn. When I was attached to the team, this boy was admitted for infected wounds on his knees. He has been told to get off his prosthesis for a few months in order for the wounds to heal, but how would he go about doing Taekwondo (a black belt holder), going out with his girlfriends and training with his police cadet corp in school without his prosthesis? So the wound deepened and he was admitted. In the ward, we were able to take away his prosthesis to rest him forcefully. That was the plan, but it didn't work. Often I cannot find him on his bed, or even in his ward. He would often be on the wheelchair, roaming the corridors and in the other wards trying to chat up the other patients making friends. I once caught him in the men's toilet, holding on to the plastic bars frame of the toilet doors doing pull ups! When I met his mother once, out of routine, I asked her if S has been registered an OKU (as a disabled person). To my surprise, the answer was no, eventhough there is no doubt that a double amputee qualifies for the label. It is not because of the fear of stigma or anything complicated like that. The mum genuinely did not feel that S is an OKU, being him as he is doing normal this that boys of his age do.

This boy made me believe that there is no need to feel pitiful for children with disability, in contrary to what I have been taught. Remember those moral lessons in school, that compelled the students to have a 'sikap belas kasihan' to blind people? I am a sure a professional film crew can easily cook up a sob story about S along with all the melancholic sound effect to accompany the story of this unfortunate boy who was born without his legs. We have all seen it. But the reality is not like this. The difficulties they face in adulthood arises from such societal conditioning that we are subjected to. If we all treat S like how his mother treat him, i.e. a normal person who will try and manage with whatever resources that is available to him, there would not be any difference between us and them.

Later on in my career, I have had to meet parents of children born with problems. A child without a limb, a blind and mute baby as a result of a congenital infection, a child with very limited sight due to his extreme premature birth, a boy with speech delay who portrays features of autism, a child would cannot read and most likely has dyslexia, a child with cleft lip and palate etc. Parents to newborn with such problems are often very worried and upset, but I am always able to confidently convince them that it is a manageable situation, that it is not the end of the world. As the child grow up into toddlerhood, it is very satisfying to see parents bringing in their child to clinic in a relaxed state, sometimes chasing after their child telling them off for being naughty, in other word treating them like any other children. These special children know their children so well and takes pride in any strength their children display, and I am always delighted to learn about this side of them.

Cognitive disability is sometimes less easy to adapt compared to physical disability, just because of our education system which caters too narrowly for the most academically able group. I dare say of all the 'normal' children, at least half are not be able to fully benefit from our education system, in the sense that the system does not bring out the best potential of each child. I have often received referral from schools who want their student to be signed off as an OKU (with cognitive problem or learning disability) because they cannot keep up in the mainstream school. In the form, the doctor is suppose to recommend appropriate education placement for the child. I am often perplexed that I should be filling up this component. I am reluctant to label any child OKU just because they are non-specifically slower in learning compared to their peers, bearing in mind that I am not particularly a bright student myself. The teachers and psychologists are supposed to be the ones who are the expert in this field, not a doctor. I cannot simply choose and tick a box putting a label to a child after one clinic session. I often spend these sessions discussing with parents the actual aspects that is problematic about the child (in contrast to what the school thinks), the aim of education specifically for this child, how to ensure he can lead an independent adulthood. I teach them to rely less on the system and put more effort to help themselves.

A disability in a child is not a curse. It does not bother a child and it should not bother us. Every individual is unique in their own way and we should allow each to develop into their full potential in their own way. I thank all the special children and their family whom I have the privilege to work with in all these years, dispelling the dogma drilled into me, and teaching me a unique kind of resilience I did not know exist.