Social Media, A Lifeline for People Dealing With Disability

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Mar 21, 2016

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Every parent remembers (in a haze, maybe, but we do remember) the early days when the first baby had just arrived. The broken sleep. The chaos. The complete inability to plan anything further away than the afternoon.

Baby number two tips chaos perilously close to a permanent state. By number three (if number three ever happens), it is clear that chaos has moved in and settled down. There is no looking back.

But of course, there is. Those babies (all three of them) do grow up. They get toilet trained; they finally start feeding themselves, and they learn to sleep through the night. Life slowly but surely returns to normal. Parents emerge from the wreckage, blinking in the light, and reassemble themselves. They go back to full-time work, reconnect with their real friends, rebuild their old lives.

Unless their children have special needs. In which case, parents continue to exist in that state of utter chaos infants and toddlers impose. In which case, parents bond mainly with others like themselves, as if the only real fact in their world is their child. If they are PC, they introduce themselves proudly as a “special needs parent”; if they aren’t, they never say a word. Either way, it’s how they define themselves.

Everyone else has moved on. Their time is again their own. They make plans and they go out without having to think about whom to ask to babysit. They travel, they sleep late on the weekends, they lounge in the garden on a free afternoon, they read books, they watch movies. They have interests, lives.

Parents like me remain prisoners of another person’s feeding, bathing and sleeping schedule. Because we feel we need to save our babysitting capital for emergencies, we turn down invitations so often people stop asking us. We love books but we are still snatching our guilty two minutes in the bathroom, our three minutes lying in bed before sleep overcomes us. The next day we can’t remember what we read, let alone what page we were on.

We know no one cares, but we still talk a lot about inaccessible buildings. We suspect we’ve become boring, but we still go on and on about the school that refused to admit our child. We are so wrapped up in our own difficulties, we no longer have the energy to inquire about anyone else’s. We don’t have time to write emails; we don’t have the energy to chat on the phone. We are isolated, but we can’t be bothered to find out what’s happening. We crave social contact, but we are too tired to reach out. We know what we are doing is meaningful and important, but no one else is around to tell us so.

Enter Facebook.

For parents of kids with special needs, Facebook is a life saver. I’ve heard all the criticisms; I’m well aware of the ridicule people in the “real” world direct at those who exist in a virtual one, but I’m all for it.

The Facebook world is alive. It’s there when you need it, whether that is in the wee hours of a Saturday night or early on a Wednesday morning before the other kids are up and getting ready for school. It waits for you. It’s got a silly, sexy film that you can watch and remember there really is another world out there. It’s got laughter and nonsense and cat videos, yes; but also political commentary and debate, links to interesting articles and images, book reviews and psychological insight.

It also has ready-made communities for people going through the exact same things. There are Facebook groups for Down Syndrome, Cerebral Palsy and Autism, for kids eating with the help of G-tubes or struggling with mental health disorders and behaviour issues. Even rare syndromes like Apert’s and Tourette’s have active groups that are well-established and full of helpful advice and encouragement.

But that’s just background and to be expected. That’s what the Internet is there for. For me, Facebook serves the need for people living with disability to be recognized, validated, approved, to inspire and strengthen.

A photo of a 26-year-old woman smiling is no big deal, right? Young women smile all the time, and we don’t note it particularly – unless one is like Moy Moy and finds responding to life a major effort. I posted a photo of Moy engaging with a doll recently, which was stunning simply because it was so unusual for her. She was wreathed in smiles. My Facebook community responded as if she’d just gotten into Harvard – hundreds of likes, wonderstruck comments; everyone was celebrating with me as I celebrated Moy.

Nathan’s daughter Abby’s first day at school was greeted by his Facebook friends with shouts of joy and admiration. Beth’s daughter’s medical crises evoke prayers, offers of help and amazement at her endless strength and good humour. Madhusudan shares videos of Abhi singing or dancing and his friends erupt in cheers and a chorus of approval.

Does it seem superficial? Are we pathetic for lapping it up? I don’t think so. I think the beauty of social media is that it offers, in a way never previously possible, the uninitiated an understanding of the day-to-day lives of people with special needs and their families. What we don’t understand we tend to fear. And it is fear that isolates.

Facebook makes our world accessible, familiar, endearing, interesting and even funny.

As Moy’s Mom, I get to share the stories, the worries, the panic, the pride — all the little details which make her the quirky, unique person she is. If I don’t share much about the downside, if I choose to post the one picture out of 700 in which she’s smiling and animated, it’s because I don’t think people need much help imagining the worst. People need help seeing beyond that.

That way, when they meet her in the real world, they’ll have the whole story.

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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

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