Thursday 3 December 2015

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.

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.)

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.

[In The Hindu]

Saturday 28 November 2015

The idea of Bombay

People like me, people who came of age in the eighties in middle-class urban India, grew up in a different India. We were something of an in-between generation. Our grandparents lived through the transition from colony to nation; our parents grew up in the years of nation building. We grew up taking independence and a certain degree of development for granted, without having all the gadgets, the conveniences, the consumer goods, and the general first worldness that the young of today were born into.

We also grew up with messages of unity in diversity surrounding us. We were all one, despite our religious and cultural differences, advertisements and pre-movie short films (and when TVs came into our homes, Doordarshan) told us. Ek, Anek, as a particularly cute animated short put it.

And while even our young minds knew there was an element of propaganda here, we chose to believe in it, or at least to subscribe to the notion that that was the way things should be.

To stripling me, Bombay pretty much exemplified this. After living in Visakhapatnam, Secunderabad and Madras, none of them small towns by any means, I was now in a true metropolis. The neighbourhood where we lived, the kids in my school, the markets, the buses, the trains, most of all the trains: all of this city teemed with diversity; it was like living in a Films Division short.

I grew up with more friends whose families had come here from various parts of India—one, two maybe three generations ago—than those who could claim centuries of city-born ancestry. Quite natural in a city that didn’t really exist as a city before hunks of its hills were toppled into the gaps between islands to make new land. We celebrated each other’s holidays and high days with gusto, visiting each other, sending across sweets and savouries to each other to better share the joy.

When you visited relatives back in the ‘native place’ during the summer holidays—in this city of migrants, everyone seemed to be from somewhere else—your Bombayness was acknowledged with gentle proscriptions along the lines of ‘You can’t do X here; this is not Bombay.’

Don’t get me wrong. It’s not that the city was immune to communal and religious divides, that caste and class lines did not exist—it would be beyond childishly naive to suggest that—it was just that it felt like we were living in a country that was trying to rise beyond those schisms and, more important, in a great city that was leading the way in that effort, a city that had always been a pioneer in progressive thought. (Remember the Quit India movement? Remember where it was launched?) In Bombay, one could believe, the place you were born in, the god you bowed to, the language you spoke, the food you ate, none of these would stop you from making it as long as you were willing to work hard.

That changed in 1992. The demolition of the faraway Babri Masjid that December brought riots to Bombay. For those of us who lived here through those times, there was a chill in the air far colder than the city’s puny winters could ever bring. Men shaved off their beards lest they be mistaken for Muslims. Nominal Christians who weren’t the most regular of churchgoers made sure their crosses were visible. Nameplates that had names easily identified as being from the wrong community were taken down, leaving behind clean rectangles on otherwise weathered walls and doors. The first mentions of vegetarian housing societies came up. People talked softer in trains and busses for a while. Those riots, the ones that followed in January ’93, and then the bomb blasts that March, they killed many innocents. And they also delivered a mortal wound to Bombay’s belief in its invulnerability from the small-mindedness lesser towns and cities were plagued by. When the Shiv Sena-Bharatiya Janata Party coalition that came to power in the next state elections renamed the city Mumbai, it was just a literal ending to the idea of Bombay; that city had already become something else.

Mumbai is still a resilient city. As we sprang back from the riots of ’92 and ’93, so did we recover, quickly, from the cloudburst and floods of 2005. We survived the body blows of the multiple blasts that ripped apart local trains in 2006. We got through the full frontal terror attacks of 2008, the seventh sad anniversary of which we marked two days ago. Yes, even then, we stopped what we were doing and stayed home and watched our televisions, but we were soon back at work, a little quieter, a little more thoughtful, a lot more fearful, but what does one do, livings must be earned. Each time, we went back. We regained our swagger and our style.

Mumbai, like Bombay, has no time to spare, where distances are measured in minutes and hours, not kilometres. It is still a place that rewards hard work, where fortunes can be made from humble beginnings.

Mumbai is a more crowded city than Bombay ever was, but that was inevitable; gold-paved streets are magnetic, but an island only has so much space in which to grow. And this has meant that we pay ludicrous prices for the cubes of air we call our homes, that we spend precious hours just getting to and from our places of work, that our open spaces are threatened, that builders can buy politicians and bureaucrats will conspire. (For me, it’s meant that my family had to move out of the city, to its little sister across the creek. Once it was called New Bombay, then the municipal signboards welcoming you to the city were blackened with tar and a new name was painted over it in rough letters: Navi Mumbai. That name become official too. Just history repeating itself in a different geography.)

Mumbai is still a safer city for women, for children, for the aged, than most others in this country. It is still a home to the arts and culture and sport and entertainment and all the fine things that are worth working hard for, the better to appreciate and enjoy them.

We live more comfortable lives, certainly, than most of India. We can take our electricity for granted most of the time. And though we panic about the water levels in our lakes, we somehow make it through each year until the monsoons arrive. Our air is far from clean, but the sea breeze bails us out most days, blowing away some of the smog.

And yes, we’re richer. And yes, we have so much that more developed countries have, the big brands and the High Streets, the glass towers and the luxury cars. Heck, we may not be Shanghai yet, but we have our very own suspension bridge.

But in the Mumbai of today, it has become okay to talk of the Other.

Bigotry is now legitimate; it no longer speaks in whispers, it is loud, it shrieks on our streets, shuts down shops, and sometimes the whole city. It does not want you to live in its buildings, it does not want you to cook your way, dress your way.

In this unsentimental city, hurt sentiments take centre-stage more often these days. (And we, the media, cannot absolve ourselves from blame for providing a steady stream of the publicity to the publicity-seeking hurt sentiment that comes our way.)

Again, don’t get me wrong. Just as it wasn’t a total free thinker’s paradise when my generation was growing up, it certainly isn’t hell in which we find ourselves in our middle age. Things are undoubtedly and demonstrably worse in other parts of India and, yes, the world.

Mumbai still is, and regularly proves itself to be, more progressive in its thinking than most places. In Mumbai, hard work still rules, and good ideas can still find a home. In Mumbai, you can still say what you believe, and be sure that no one will try to kill you if what you say offends them… Reasonably sure, that is. I can still casually call the city Bombay, as an old friend can do, without more than the odd idiot on Twitter scolding me Perhaps one day louts-for-hire may gherao this newspaper’s office if their paymaster’s delicate feelings are hurt by something we say, but this newspaper will still come out the next day, and its journalists will still walk the streets unafraid.

But here’s the thing. Today, liberal voices are more hushed; free speech advocates now censor themselves. This can only be a bad thing in a city founded on free movement: of people, of goods, of money, of ideas.

Bombay was all about differences coming together and somehow working. Bombay celebrated its differences, made the most of them and like some medieval alchemist, it conjured up success and growth. One couldn’t expect any less from a city that was imagined up out of seven islands and lots of swamp and sea.

But maybe that’s a lot of poetic tosh, born of too much brainwashing by the Films Division in one’s formative years.

Perhaps the Idea of Bombay began to die before the name did. And perhaps now, while it still gasps for breath, it’s really past hope and we should let that idea go. That would make me sad.

There’s a part of me, though, that doesn’t want to believe that: the part of me that still calls the city Bombay, as if using that name would conjure it back into existence. Who knows? Maybe there are enough of us, and if we all think about it really, really hard..?

[In the first Mumbai edition of The Hindu]

Saturday 21 November 2015

Published: Forbes India, ForbesLife India

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Tip-off: Google Chrome

3 Ways to Build a Stronger Public Profile (With Indrajit Gupta)

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