Monday, September 11, 2006

nowhere to turn to .....

This article 'Nowhere to turn to' by Chong Sheau Ching, published on star sept 11....some of the stories mentioned related to the experiences I have with Teddy Bear.... sometimes betul-betul geram one ...aiii , I asked income tax officer back in 1997 - told them that the Law Act need to be amended - to give tax break for the care taker of the unwell dependant .....They acknowledged this issue for years , yet never bother to do anything, and guess what - they asked me to go adopt Teddy Bear as my child - then I'm his 'mum' and then can claim handicapped relief and allowances , nonsense !

YAH !! Wah!! Aaaah !!! Loud screams rang eerily through the neighbourhood. It was past midnight. I went up to the window to see what was going on. A few other neighbours were also standing by their window sills. Another loud scream came from the house opposite mine.

It was her. She's a mentally ill young woman. Over the years, i have see her throwing dishes into her neighbour's compound, hurling her brother's toys onto the street and screaming at passers-by. An ambulance was rushed in once because she had cut herself. The family's maid jumped over the fence on several occasions, screaming for help.

Once, she walked into my house and tried to push me to join a multi-level marketing scheme. when I politely refused, she was so angry that I thought she would hit me.

I can avoid her screams and throws things. But not her family. They often look tired and harassed. When I walk past and say 'hi', they would lower their heads and pretend not to see me. In a society filled with prejudice against people with chronic illnesses, I can understand how they feel - embarassed and ashamed - about the havoc the young woman causes in the neighbourhood.

In contrast, my Down Syndrome brother is much easier to take care of. He occupies himself with his drawing and piano-playing. He rarely gets angry. If he does, he lets out a few loud mumbles. He's only difficult to handle when he can't walk due to swollen legs caused by his weak heart. Two people are needed to lift and carry him. We are all families with dependants who need constant medical care. Expenses are high because our dependants do not have health insurance, or rather, no health insurance company will insure them. Taking them to government hospitals is not an option when one has to work and have no time to queue for hours. Once, my brother accidentally drank some chemical. The emergency unit in the hospital took a blood test and asked us to wait for the result next day. He was suffering but he couldn't tell us what was bothering him.

The next morning, the hospital told my family that his blood test was lost so a new test had to be done. Another time, the dental department didn't want to take care of his toothache because of his heart condition. That left us no other choice but to take him to private hospitals. My brother who can't talk also needs rehabilitation. so that he will know how to communicate his suffering when his health deteriorates. There is no Down Syndrome centre for people over 40. I have to pay for a private practioner and there is no insurance scheme. And no tax-break either. i am his sister. My 75-year-old parents can get a tax break but they can't take care of him.

When I read about how rich businessmen avoid paying taxes and top-notch company directors driving luxury cars bought under company expenses, I find myself asking, "how does this happen?' The rich get the tax breaks but not all those who need it!' A friend once said to me, "life is never fair. What are you complaining about? You have more than many people!"

I know. So does every middle-class family who have chronically unwell dependants. I know of families who have sold their houses, cars, jewellery to treat illness. Often, the house is their only asset.
They don't sell it because they don't want to uproot the elderly parents. Every month, they live hand-to-mouth.

One family has two adults children with a degenerateive nerve disease. The elderly parents' savings have been drained, over the past 10 years, by medical expenses. The only source of income is the parents' odd jobs. They can't afford to send the siblings for the operations and rehabilitation they need.

As a result, their condition has deteriotated over the last few years. It is sad to see them go blind, and their speech slurring with each passing year. They can't get any assistance because they are not disabled. If they do not get the required medical help, in a few years they will depend on ageing mother to feed, bathe and change them. Their brother blames them for the hard life their parents go through. He has a good job but feels that he has enough of helping his siblings. He needs money for his own young family. There is no tax break to motivate him to help. Can we really blame him for being so heartless ?

Some essential drugs have gone up 300% in price lately. Who is going to take care of them when their parents pass away ? They are not the only ones who need help, there are also others, trapped in helpless cycle of illness. And there is no end in sight. A group of us has been trying to raise funds for them. Sometimes we feel discouraged but remind ourselves of what Mother Teresa once said 'We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop' ........

1 comment:

ringgit said...

You know, one of the houses in BU12 that is for sale has a retarded kid who screamed for help and accused us of intruding when we wanted to see the house. I didn't want to buy the house because of superstitious. Now I wonder if I am being prejudice. Sigh...