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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