Let me tell you a little story about three little children and their friends. A little boy by the name of Afiq whose eyes are always looking away, a little girl whose name is Aishah who looks like she is at most two years old but is actually five. And a seven year old boy called Irfan whose smile can brighten up even your darkest days. Unfortunately, he rarely smiles.
Afiq is a child who is almost normal. His right leg curves inwards and his eyes cant really focus at you. He never has an expression, but i know he has feelings because everytime I go to visit, he will get up from his cotbed and throw his arms around me. When I talk to him I sometimes wonder if he understands any of it. But when I am about to leave, he will come awkwardly running to the car so I know I must have touched him, somehow. Sadly I don’t know what is wrong with him. I suspect he is autistic but I don’t know for sure. His files only say that he was put there at the centre by his grandfather a long time ago. And that his mother was a teenager who had been raped. As a result, Afiq is the byproduct of their past lives whom they would rather forget about. Which is a shame really, because if he had been exposed to physiotherapy in the earlier years, his leg would probably be normal.
Aishah is a tiny little being with short straight hair, squinty eyes and a protruding jaw. She has Down Syndrome and is a paraplegic. Her parents probably thought she was a mistake and wrote her off. No one has ever come to visit her since she was placed there 7 years ago. Aishah cries a lot and sometimes bites into her own flesh. There is no mental stimulation for Aishah. She is fed at mealtimes, and that is about it. But when i carry her. She rests her head on my body like a little baby. And I am sold.
And then there is Irfan. Irfan is beautiful. All my friends whom I have brought with me on my visits there will remember Irfan. Both his legs curve inwards and both his palms too. And I don’t know what they call that. The worst part, is even the people in the centre don’t know. I dont know his story either. A beautiful face like that, with deformed hands and legs. Did his parents just reject him because he was not perfect?All I know, is that when he smiles, he makes you forget all your troubles. You lose yourself in his small joys, so pure and innocent.
There are eighty of them at this centre. Abandoned children with various misfortunes ranging from severe cerebral palsy which cause them to not be able to move at all, mental dementia, down syndrome, autisme, epilepsy et cetera to simple mental retardation, which just means that they look physically abnormal. There are even normal children who have no papers and therefore have nowhere to go. Stateless children, they are called. Children of foreign construction workers and such who abandon their offspring to escape the law.
They are all dumped together at one centre, housed in dorms and cared for by minimum wage workers. No therapists see to their development, no parents come and visit. The living environment is stinky and unhygenic. They are shortstaffed and not enough cleaning is done. The sheets don’t get changed as often and the clothes of the infected don’t get sanitized.These children are merely kept alive and this seems to be regarded as a social favor. Once in a while corporations would donate hampers and the more able children will put up a performance or something of the sort to be presented at a charity gala where cheques are handed out and happy photos of them are snapped. These are the kind of photos that make it into newspapers and journals, and as a result when we think of disabled children, we all have this picture at the back of our minds that show these children as being well looked after in a systematic environment. And then the function is over and society forgets all about them all over again. And this goes on and on. All around the country.
I cannot comprehend why in Malaysia, a relatively developed country, this can still exist. I voice my concerns to the Director and the Welfare Department and they say “Memang, kita tak ada therapists.” Why cant they get some? I put some people out there to look around and apparently there is a very big need for all kinds of therapists to come from abroad. They have known about this need for some time. Why has no one done anything about it? In the meantime they keep renovating these centres throughout the country. It keeps looking better and better from the outside, while on the inside the children are starved for love and attention and of the chance to become a viable human being. This is why Malaysia will never have our own Stephen Hawkings or our own Team Hoyt. Because as soon as they are verified as imperfect, families are able to send them away.
I have been wanting to write about this for a while now. But it hasn’t been easy . There is too much to address. How can families abandon their offspring? How can the system let them? Why do we never hear about these children left to survive like this?
It is still not easy. For how do you capture pain and suffering, loneliness and longing, and put into words that would be harder still for people to read? But what my eyes see everyday, my heart is crying out to share. Maybe, just maybe we can change things.
Suddenly,I am reminded of what Kimmy, a nineteen year old boy from Dungun said to me today as I was leaving. He said “Aunty, dah family saya taknak ambil saya, aunty sajalah ambil saya... biar saya jadi anak aunty..i” Oh kimmy! If only it was that simple. Poor poor kimmy! This nineteen year old boy has one blue eye and one brown. He has only 20 percent vision but when the sun is up high, he can do great things with his fingers. Give him a ribbon and he willl braid it into a keyring. Give him building blocks and he will build a cute house with a roof and windows. He has been longing to go home for as long as I have known him. I will never forget how on my first visit there I saw him running to the facilitator, saying “Encik saya nak balik, saya nak balik…” To which the administrator would reply.. "Dah, kita dah telefon, dah mak bapak tak nak mari , nak buat macamana...?” How I wish he wouldn’t say that. It is so hurtful to know your family doesn’t want you.
Today I sat in the administration office and discussed how to persuade Kimmy's parents to come and visit at least, if not to take him home. We are going to pay his parents a visit. But to be honest with you,I don’t understand why he would want to go home though. Apparently his parents used to lock him up in a room like a freak. But I guess home is still home no matter what. My poor poor Kimmy.
Children are innocent. That’s what makes them so beautiful. They are untainted by malice and conscious wrongdoings. They are gifts from God for us to raise as we see fit, and through whom we leave our legacy on this earth, however small. How anyone can abandon their children is beyond me.
Perhaps it is a lot easier to love them when they are physically perfect. Easier still if they were beautiful. Which is probably why there are so many abandoned handicapped children in this country. I suppose 50 years of independence may have taught us a lot of things. But Love for the lesser mortal is not one of them.
Why is that? One wonders. We are brought up to be thankful for our blessings. We are raised to sympathize with the less fortunate and be grateful for being better off. We see starvation a million miles away and our hearts weep for them. Why then are we never made to think of the unfortunate in our own backyard? The severely handicapped and the mentally retarded are a stigma in our society. As family members they are shunned and hidden away and most often do not feature in the family portraits. If only we all realize that these are Human Beings, Living Souls, who feel just like us, and have emotions just like us. They too get bored and lonely. They too need love and nurture. Perhaps more so than us, for they cannot seek it, only wait in the hope that they will receive it.
I want so badly to change the way things are for them. And I welcome any suggestions from anyone. For now my girlfriends and I do what little we can to make their world a warmer place. We bring them toys and music, and snacks sometimes. And they have a little something to look forward to everyday. But there is not much else we can do. Because there is too much to do and I don’t know where to start.We cannot help them speak better, or walk better.We are not therapists, not even doctors. Just mothers. We try and go whenever we can to feed and talk to them, play and sing with them, and just hug and love them.
Can any of you help in any way?