Welcome to the World of Disability

By

Jan 9, 2015

Share

I’m in the Chicago-O’Hare airport, standing in a long line at the security gate. Everyone ahead of me is playing it cool: We’ve got our boarding passes ready, and our passports are open to the right page. We know about removing our laptops, and our shoes, and for sure, we don’t have any liquids in our baggage. Our line is moving slowly, but it’s moving. This system is working.

Except for one young boy. At first he just seems high-spirited — spinning in circles, laughing with abandon. After a few seconds of watching him, however, I realise those high spirits signal something else. I know what’s happening: That boy has autism.

His parents are a stylish young Indian couple. His mom is dressed in tight-fitting jeans and sexy black boots; his dad has an expensive cowboy hat and a tailored jacket. I can tell just by looking at them that never in their wildest dreams did they imagine they would be in an airport with a little boy whose spinning is now attracting unwanted attention from all those other travelers in the same line.

Strangely, however, his parents aren’t bothered. They are travelling with extended family – two young aunts, a strapping uncle and a dadiji – and seem strong and focused. They seem to know that spinning is important for their son, and that it’s helping him to stay calm in the chaotic, unpredictable world of the Chicago-O’Hare airport.

In fact, they are so cool about it that I begin to wonder what is wrong with me. Why am I able to cope with a security routine which is clearly CRAZY? Why do I submit to a system that demands I remove my shoes, surrender my belongings to intense X-ray scrutiny, and allow a stranger to put her hands all over my body — just for the privilege of boarding a plane?

Welcome to the world of disability — it makes you question everything you think you know.

Parents of kids with special needs never expected the challenges their children present them with every single day. The last thing they thought, as the Homecoming Queen or the Most Likely To Succeed, was that their child would be the one with Down Syndrome or Autism or Cerebral Palsy. Because that just doesn’t happen to people like them.

And yet – amazingly! – it did. Out of nowhere, they find themselves the parents of a kid with difficulties. And then, they find themselves being asked to do things they know they are not capable of doing.

But disability is the great inspirer. People who would otherwise have led conventional, humdrum, 9-to-5 lives, with tidy homes and flourishing careers, turn out to be capable of more every-single-day courage and creativity than they could ever have imagined. They deal with seizures and tube feeds and hospitalisations calmly and confidently. They take erratic behaviour and anxiety and inappropriate sexual displays in their stride. They take care of their children with quiet heroism, facing situations that would make brave soldiers weep.

And in the process, they question the ground rules we have all agreed upon. They challenge the norms. They ask us to ask ourselves what we are actually doing.

I see it all the time—well, not all the time. For some parents – too many – having a child with a disability is like a conviction: Suddenly a family is sentenced to a life of isolation, doomed to spend the rest of their days explaining and apologizing and asking for forgiveness and accommodation.

It doesn’t have to be that way.

Because disability is also the great leveler. It can happen to anyone and it frequently does. One in 10 children in India has a developmental disability. If your child is one of them, you need to know that you are not alone. You need to reach out to the wide, accepting community that exists in Mumbai and all over India – a community where you and your child will be welcomed and celebrated.

But you also need to make a choice.

As parents of children with special needs, we need to choose: Do we celebrate our kids, accepting them as they are, or do we cling to some outdated, standard-issue template for how our children should be? This is radical stuff. When you decide your child is fine as she/he is, you give all children permission to be themselves. What a gift!  Let’s do it, every single day.

Share

Written By Jo Chopra

Jo Chopra McGowan is an American by birth and a writer by profession. She is a former criminal (peace movement/anti-abortion activist jailed in America on a dozen occasions), a mother of three, and has lived in India for the past 33 years with her Indian husband, saas, masiji and assorted other joint family-wallas.

She is a co-founder and director of the Latika Roy Foundation, a voluntary organization in Dehradun for children with disability. She also trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

See all articles by Jo

Share

Leave a Comment

Your email address will not be published. Required fields *.