By Anubha Garg:
Perhaps it was coincidence. I began work at the Amrit Foundation of India, an NGO that focuses on intellectual and development challenges. Only a few days later, my sister-in-law went into labour. As we waited for news on the progress of her labour, we were told that she had ‘complications’. Complications? Oh no! Coupled with my new work environment, it left me wondering – “What If?”
What if I were to have a difficult delivery? What if my child were born somehow ‘different’? I slipped into a reverie…The birth of a child is generally one of the best moments in a parent’s life. But what if my child has challenges that are not visible at birth? As time passes, I realise that she doesn’t often smile; in fact, she generally doesn’t show much emotion. As she grows into a beautiful toddler, she doesn’t say much unless it is to respond to a direct question.
She becomes old enough to start preschool. At her regular teacher meetings, I am told that she rarely interacts with any of the other children. I try my best to find playmates for her but she prefers to find a place to play by herself. Slowly, though, she makes friends with another child. Her friend is the world to her. She believes and does everything he says, never wanting to make him upset. I worry about her, hoping that as she gets older, she will become less naive.
When the time comes to shift to a regular school, her friend goes to a different school and this upsets her. She cries, throws tantrums, but when she realises the outcome isn’t going to change, she retracts into her shell.
The cycle starts again. She doesn’t want to talk to any of the other children. Her teachers tell me that she is very intelligent, great in her school work, but does not say a word unless called upon to do so. She always knows the correct answer but never volunteers to answer. They call her shy and introverted. One of her teachers makes her sit with the most talkative kid in class, hoping the two of them would absorb some characteristics from each other. Another tells me she refused to read out her praise-winning essay to the rest of her class because she didn’t want the attention. I get calls from her school on multiple occasions telling me she has soiled her clothes. When I ask her why she didn’t ask permission to use the toilet, she says she tried but she was scared and the words just wouldn’t come out.
After some time, she makes another friend. The two girls become inseparable. They are both lost in their own world and spend the entire school day with each other. On sleepovers, they prefer to sit around and read books instead of going out to play or even talking to each other. Though her friend shares a lot of her characteristics, lucky for me, she is somewhat more outgoing. Through her, my daughter starts talking to a few more children and makes some more friends. I see a little ray of hope.
The girls grow apart in high school. By now, my daughter has matured and has realised that she is a little different from other kids. She knows she needs people to talk to but is scared of approaching them and starting a conversation. As she goes on to college, I can see that she has developed a pattern in making friends. She first becomes part of a big group and then narrows it down to the one or two people that she feels most comfortable with. From there on, she becomes very close to those people only and hardly talks to anyone else.
The biggest challenge of her adult life comes when she has to give her first presentation in front of her class. She gets extremely anxious and has something close to a panic attack. She tells me she wasn’t able to sleep the entire night before it was due. She manages to stumble and stutter her way through the presentation, mostly reading off the slides. As time goes by, her presentation skills improve somewhat, but the anxiety stays. Being the centre of attention still terrifies her. I wonder how she will survive in the regular fast-paced world where she will need to interact with many different people every day…
Suddenly, I heard my husband calling out to me and I remembered where I was – in the hospital, looking forward to news of my sister-in-law and her baby. The moment had arrived. A lovely, healthy baby girl was born.
I realised that all these thoughts were only a manifestation of certain fears emanating from how society treats those with challenges. Even today, disability is often seen as a curse and many parents jostle through problems day in and day out to carve a dignified life for their children facing challenges. The biggest issue is education where, according to UN data, a staggering 34% of children with challenges aged 6-14 years are out of school. The figure is higher for those with intellectual disabilities (48%), speech impairments (36%) and multiple disabilities (59%). Instead of pigeonholing all persons with challenges, they need to be given an opportunity to showcase their uniqueness. An inclusive society and an environment free from prejudice and social discrimination is the need of the hour.
“What If?” – That was the question that I’d been pondering over when I slipped off into my own world. So, what if I have a child who is different? Not normal, the way that the world sees normal? That will not change the fact that she is a part of me. My expectations from her may not be the same as from a child without challenges, but that will not stop me from encouraging her to dream big and supporting her in all her conquests. That will not change how proud I feel about her achievements; I might even get more happiness at the tiniest of her successes. Most importantly, that will not change the way I love her. After all, my reverie was as much about me as it was about her.