Leave Out the Judgement

I was recently at a friend’s place for dinner, and I don't really remember how it got there, but the conversation turned to  “What would you do if you knew beforehand that your child was going to be born with a certain disability?” (Rather depressing party conversation, I agree). The responses ranged from “It's not morally right to terminate such a pregnancy” to “I would feel like I'm murdering a life if I ended it”. I think most people sitting there forgot that I have a daughter with Down syndrome.

Coincidentally, I had happened to have recently seen a video featuring people with Down syndrome that was evidently created to sensitise the public to their lives. It was quirky, humorous and warm…until the very end, at which point it decided to question the ethics of prenatal testing for anomalies, and the decision to terminate such pregnancies. The message shifted from “Understand who we are” to “We have a right to be born, we are just another kind of people!”

After nineteen years of parenting a person born with challenges, I have a question:

Why do we ascribe morality and ethics to a person’s decision to have or not have a child with known disabilities and challenges?

I don't know about everyone else, but the first thing I did when both my girls were born was to count their fingers and toes. And every time they opened their eyes for the first few days, I waved all kinds of things, from my hands to stuffed toys, in their faces to ensure they could see. I also snapped fingers, sang (rather discordantly), and clapped all around them to figure out if they could hear.

I needed to reassure myself that they were visibly normal. I’ll wager that most people feel the same way. Everyone desires a ‘normal’ child.

When we found out that Damini had trisomy 21, we heard every well meaning sentiment from “She is god’s child”, and “You are the chosen one”, to “You are blessed!”

I really appreciated the people who just said “Oh”.

The thing is, you never quite know the extent of a challenge beforehand. Imagine you have a lifetime of painfully discovering them:

-    When the developmental chart races ahead of your child

-    When you find out how difficult it is for your child to communicate with or without words

-    When ceilings are reached rather quickly in cognitive capabilities

-    When each skill is painstakingly acquired over more years than you can count only to be lost in a couple of weeks of negligence

-    When your child is sick more often than the rest of the world

-    When toilet training takes as much time as it takes for everyone else to learn rocket science

-    When you realise that your child may never learn to express his joy, anger, fear, hurt in socially acceptable ways

-    When you have to build your child’s self esteem in a largely indifferent environment

-    When your child is unable to involve socially with their peer group

This list only gets scarier.

How does one cope?

We put on our game faces, and employ any one, or a combination of the following:

-    Pray to all kinds of gods

-    Never give up the hope for a miracle cure

-    Learn to stuff our egos in our shoes, as it comes in the way of cajoling our child, begging for our child, and persuading the world to acknowledge our child

-    At least one person in the family puts his or her ambitions and plans on the back burner permanently, puts on a game face, and starts convincing him/herself that this is very fulfilling

-    Become pushy and grabby on behalf of our children because they cannot do it for themselves, and society really appreciates that in the regular population…. only it's called ‘ambition’

-    If we can afford to, hire a whole bunch of people to outsource their development to

-    Form associations with other parents of similar impairments

-    Save up every ounce of patience for this one person, and have none left for everyone else in your life including perhaps your ‘normal’ child

-    Learn to live with the giant lump in our throats most of the time

-    Put up a brave, even defiant facade for the world

-    But mostly, we just get on with the seemingly impossible task of making our kids independent and productive members of society

The things we say to assuage ourselves

“Our life is so much better because of her”

“Even normal kids have challenges”

“Just another way of being”

“I wouldn't have it any other way”

What ever you say or do, there is no avoiding the frustration you feel watching your child struggle to catch up. No avoiding the helplessness when you watch your daughter stand on the fringes of a social group not knowing how to be a part of it. No avoiding the anger when you ‘perceive’ indifference towards your child. No avoiding the fear that someone might take advantage of your child. No avoiding the overwhelming thought that there is no let up in this role ever.

Most of all you worry. You worry about “what's going to happen to her after you”.

I don't know how one can romanticise all of this. I cannot understand propaganda that seems to suggest that there should be more of ‘us’. Let's not forget that there is nothing normal about this. These are aberrations from the normal. I'm fairly certain that, given a choice, almost all parents of children with special needs would want their kids to be born with normal genes, physiology and capabilities. Heck, I would any day exchange my daughter’s chromosomes for a limited set of 46.

The next time I'm the ‘Chosen One’ I’d like to be chosen to win a big lottery, or to be a famous movie star some such thing. For I know that had I known about Damini’s trisomy 21 beforehand, I would seriously have considered not having her.

So let me flip the question.

How noble or ethical is it to choose for an unborn foetus with known genetic anomalies, a life of constant struggle, in a world that is at best patronising, and at worst hostile, but mainly indifferent?

I've known some regular kids, in the throes of adolescence, to turn around and tell their parents,

“I did not ask to be born”.

Meanwhile, let's take the moral judgment out of such a decision.

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