Kids With Disability Are Still Children First

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Oct 27, 2015

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“Children First” is a truism, one of those phrases we all believe and think we actually practice. Coupled with women — as in “Women and Children First” — it was famously not practiced as the Titanic sank and upperclass men scrambled to reach the lifeboats with scant regard for the little ones being trampled underfoot.

We wouldn’t do that now, would we?

As a rule for life, “Children First” is one of the most sensible and comprehensive. A culture that disregards its children is a culture with a death wish. But there is something just a tiny bit preachy about it, too. Like it shouldn’t really need to be said.

And yet, we all know it does need to be said. Over and over. Children First! Children are our most precious resource, the easiest to bruise, the most disastrous to mess up. They are foundational to our existence, our future. We really have to get it right.

But there is an even more fundamental way to understand this phrase.  I work with kids with special needs. Like most people still do, I used to call them “special needs kids” as if the main thing you needed to know about them was their disability. We talked about a Cerebral Palsy case, or a Downs Syndrome child, as if there was nothing else to say about that particular person. CP? Right – they’re the ones with brilliant minds trapped in disobedient bodies, hai na? Downs? Happy, affectionate, love music? Right. Check.

Except no. No more than everyone with blonde hair is a ditz, or everyone who writes with their left hand is dyslexic. It doesn’t work that way.

And yet over and over, the main mistake I see people making with kids with special needs is to forget that they are children first.

Yesterday I was at Gubbara, our assessment centre for young children with special needs. A little boy came in who cried non-stop throughout the session. He was four years old and he had Cerebral Palsy. His mother was an extraordinarily sweet woman, devoted to her son’s care and possessed of seemingly endless patience. The child whinged and cried fretfully and constantly as the Gubbara team met with her, but she seemed unbothered by it.

The main advice we gave her? “Your little boy is hungry. He needs more food.”

At age four, this young chap was still on an infant’s diet and an infant’s feeding schedule. Milk and Cerelac, at two hour intervals throughout the day. His crying and misery had nothing to do with his disability. He was just hungry.

I can’t count the number of children who are mismanaged – by parents, teachers and doctors – simply because they have a disability. Earaches and sore throats are routinely overlooked because the pediatrician gets distracted by the autism or the visual impairment. Dental cavities are allowed to flourish unchecked because everyone is too preoccupied with the IEP and the extra therapy sessions to think about dental appointments.

Poor performance in class or failure to complete assignments are overlooked by teachers who believe they can’t put too much burden on a child who can’t walk or who needs help writing.

Obnoxious, spoiled brats are tolerated by parents and other family members because “Bechari. Usko kya samajti hai.” (“Poor thing. She doesn’t understand.”)

And a 4-year-old child whose body and brain are developing on the same hurtling, wonderful trajectory as any other 4-year-old is held back by a diet designed for an infant one quarter his size.

If I could convince people of only one thing, it would be this: They are children first. They have the same bodies, the same hearts, the same souls as any other child. They are prone to the same childhood diseases and, therefore, they need vaccinations just like any other kid. They need haircuts, shoes, clothing and trips to the dentist just as their brothers and sisters do. They need to go to school. They need friends. They need fun activities, birthday parties, picnics and outings. If their siblings get pocket money, they should, too. If their siblings have chores and responsibilities, they should, too. If there are rules, they need to follow them just like anyone else.

But let’s start with food – that fundamental basis of all human life. They are children first. Feed them.

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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.

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