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A thin boy in a wheelchair

My brother was disabled. I talked about him to friends, maybe referred to him only in broad terms in work environments, and very rarely wrote about him. When I did write about him, I was asked — both by people who knew me at the intimate-at-a-remove level that social media has made common and by those who have my family and I knew for decades — why I had never done so before.

The reasons are not that easy to explain. But I’ll try.

(A caveat: I speak only of places we’ve lived in and visited: Vizag, Secunderabad, Madras, Bombay and New Bombay, Ooty. Other people’s mileage may differ.)

John’s disabilities were cerebral palsy, mental retardation (what is called a learning disability now, but those words still appeared on his medical files and were the ones used by our family doctor to refer to his handicap) and a heart disease.



Peter Griffin
The heart condition did not manifest visibly, but the palsy was, of course, clear to see. His legs were stick thin, bent a little. More so his right leg, which thanks to muscle atrophy and a hip joint that disintegrated, was bent a little more and could never straighten. Because he had the use only of one hand, he was unable to support his body evenly when sitting. So as he got older, his spine curved more to the right. His right hand was small; he had very limited control over it: just a little movement at shoulder level and the ability to twitch two fingers. It mostly would just be folded, palms and fingers hanging. When he was younger, before the curvature became pronounced, he could manipulate his own wheelchair by propelling the left wheel and then reaching over to propel the right wheel. Later, this became impossible, and he needed extra support on one side whenever sitting up. Another manifestation of his palsy was in slurred speech. He also had a pronounced gagging reflex, so we were never able to clean his teeth properly, and he couldn’t gargle, so he wound up losing all his teeth eventually. There was a slight squint in one eye. He couldn’t wink, though he did, in his words, ‘wink his eyebrows,’ basically a theatrical blink. One side of his face was more mobile than the other, so except with a wide grin (which resulted also in a ‘wink), his smiles were always lopsided. We tried to teach him to read and write, but he could not. He could count reliably up to three, sometimes five.

In brief, he was visibly disabled.

In close interaction — with our friends, our neighbours — he was often talked at or talked around or talked about rather than talked to. Sometimes this is awkwardness: people didn’t know if he understood and would ask us, his caregivers, about him. Mostly these questions were on the lines of ‘what is wrong with him?’ and ‘was he born like this?’ Our answers would then inevitably provoke pity. They would see the disability, recognise that it handicapped him, but they so very rarely look beyond the condition at the person.

The thing is, if you could get past the slurred speech, the retardation was not immediately evident in conversation. In the subjects he could talk about, he was always coherent, though sometimes approaching topics from very different perspectives which needed patience to figure out.

(All John’s favourite people always talked to him, never condescending, but adjusting the topics of their conversation to him, as some people have the gift of doing naturally with children. You know who I mean, that favourite aunt or uncle who you were hugely fond of as a child and who will always be special to you, the one who always talked to you straight, never made you feel like a child.)

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To the casual passer-by, he was just a thin boy in a wheelchair. (I use ‘boy’ advisedly; though he was older than me, he looked at most 20 right through his adult years.) But, in all the cities we lived in, John would attract curiosity in public spaces. At its best, it would be mild double-takes. Sometimes — often, yes, often — it would also be that gawker nudging a companion, inviting the companion to gawk as well. Sometimes it would be open pointing and loud remarks.

I’ve heard, often, in different places, the word in the local languages for ‘mad’. All this made me furious when we were children. It continued to cut deep even when I became an adult, even though I would tell myself that these behaviours were just a result of poor education about mental disability in this country, that one couldn’t blame individuals for cultural mores they’ve imbibed.

Even so, when in casual conversation, on social media, the anger still boils up in me when I hear the suffix ‘-tard’ as an insult, when I hear people laughing about spazzing out.

It enrages me that this world, this country, this city, does so little to make a more accessible, more caring planet for those whose bodies aren’t ‘normal’, whose minds will stay, always, childlike. And that needs more space than this page will allow. So let me not go there. Let me get back to the personal.

Over time, I reached a point where I don’t want to explain any more. I didn’t want to be angry. I definitely didn’t want concessions. That last is also partly why I haven’t spoken publicly about my brother; one didn’t want to be seen as seeking attention, or seeking pity, or largesse from the state or society.

All this I’ve heard this from friends who have family members with learning disabilities: all you want is acceptance, for your loved one, for your family. You want the world to just be okay with the fact that this is just another person's ‘normal,’ that it doesn’t need pity, or sorrow.

You don’t want the attention. You’re not brave, you’re not extraordinary. You’re not a saint, heaven knows. This is just your life. This is his life. This is our life. You would do the same, but these just don’t happen to be the circumstances of your life.

All we want, the families of and caregivers to people with disability — I deliberately do not try to speak for people with disability, because I do not know that world — is to not be ‘special’. To not be a symbol for courage. To not have our loved ones be the disability.

From where I sit, your fight against the financial circumstances you have risen above, or the loss of a parent early in life or of a child, or a bad marriage or broken heart or rebellious children, they are all strange to me, perhaps. Are you a hero? I don’t know; perhaps you are. But it could be just that you are playing with the cards you have been dealt.

There is no divine plan, I’m sure. This isn’t happening to you or me ‘for the best’.

It is what it is.

You live the life you find yourself in, the best way you know how.

peter.griffin@thehindu.co.in


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Printable version | Nov 26, 2021 1:19:18 PM | https://www.thehindu.com/opinion/op-ed/a-thin-boy-in-a-wheelchair/article7941939.ece

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