It’s not just about being poor or stupid.
I cried at the doctor’s today. On the way home. While doing work. Lying on the bed. Unable to sleep.
In a country where showing any weakness is like a death sentence, I cried because my son has a weakness that makes him unable to function like a “normal” human being.
That weakness makes him behave sometimes in a socially-unacceptable way and incurs the wrath and rebuke of his teachers and schoolmates.
When he has a meltdown in public, omg it’s like I’m a poster girl of a lousy mum.
“Don’t be that mum, don’t be Jules” I can imagine bystanders thinking.
Why am I so averse to my son’s weakness? Should I be happy his weakness has formally been diagnosed so we can seek intervention?
I’m sad, and scared because I don’t know how to solve my son’s weakness.
I can see him suffering when he can’t tell us what he wants to say, and we get frustrated because we don’t know how to manage a breakdown in communication all the time.
It’s something we take for granted so easily. People think: If you need something, just say it. If you have a problem, just deal with it. Don’t bother me.
So if someone can’t explain or deal with his issue, he suffers in his own private hell.
That’s why I’m crying, because I know my son is trying to cope with his own private hell when he doesn’t fit in with the world like a “normal” person, and gets punished for it.
And parents with kids like mine also struggle to cope with their own private hell, where people are generally sympathetic but really give terrible consolation.
Just because there’s one insurance plan for autistic kids doesn’t mean all their insurance needs are solved.
Just because there’s Pathlight doesn’t mean these kids will get a job when they graduate.
Just because there’s KKH, EIPIC centres and more awareness of autism doesn’t mean I can press a button and miraculously solve all the issues my son struggles with just like that.
But as I have written before, society is still unwilling to be inclusive, especially for people with weaknesses, especially for people with invisible weaknesses.
It’s simple economics. Don’t make your problem my problem.
Does society think this way: I give you my sympathies, and take it or leave it. Go find your own way through your private hell, ask the government to solve your problems, it’s not my business to care.
Don’t make your weakness my weakness.
I say: come on la, as if all weaknesses are contagious.
It’s scorn, fear and denial of weaknesses that’s contagious.
When everybody sees your problem, whether it’s a disability, a lack of disposable income, family support or health, or something just plain embarrassing, it’s like we lost our right to be a full citizen and member of society, and others are thinking how to detach their lives from yours.
There are those who stay by the side of people with weaknesses, bound by the bonds of love, family ties and duty. These are the caregivers who struggle with stigma, because they chose to take care of the ones with the weaknesses.
But who takes care of the caregivers?
How many caregivers suffer in their own private hell because they spend so much time caregiving and have no time for themselves or to have a life?
There are so many people in Singapore we complain about jammed roads, MRTs and queues. Strangely, we don’t have that overcrowding problem when it comes to people with weaknesses, unless it’s sensationalised on the news or through word-of-mouth.
For an overcrowded country, we are so distant from each other.
It’s like how hydrophobic molecules never truly mix with water, even though the cup is full of both and you try to swirl the contents around.
I don’t really know what I’m wishing for exactly. As a start, maybe for my son’s private hell to diminish with intervention, for my own private hell to fade with an incoming purpose, and my family to survive together through this weakness.
But if I hear another pithy phrase about how it’s OK to have autism because more kids are being diagnosed with autism, it’s like saying how it’s OK to be jobless because more are being let go.
Don’t dismiss these weaknesses so easily.
Don’t pretend they don’t exist if you ignore them.
Don’t think these weaknesses will be solved if you throw money at us.
We aren’t asking for charity or pity.
Just don’t alienate us like animals in a zoo or overly discriminate till we have no chance to at least try to be somewhat independent and earn our own keep.
Don’t be scared of our weaknesses till you forget our strengths.
Don’t make the possession of any weakness to be the biggest sin in Singapore.