Tuesday, 25 August 2015

Why I haven't written much about John over the years.

I've been asked, recently, both by people who haven't known me for long or who don't know my family and by people who have known us for decades, why I haven't written about John.

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

(I speak only of places we've lived in and we've visited with John: Visakhapatnam, Secunderabad, Madras, Bombay and New Bombay, Ooty. Other people's mileage may differ.)

John's disabilities are cerebral palsy, mental retardation and a heart disease. The heart condition doesn't manifest visibly, but the palsy is, of course, clear to see. His legs are stick thin, bent a little. More so his right leg, which thanks to muscle atrophy and a hip joint which disintegrated, is bent a little more and cannot straighten. Because he has the use only of one hand, he has been unable to support his body evenly when sitting, so his spine has curved to the right. His right hand is small; he has 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.

Other manifestations of the palsy are in slurred speech. He 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 is a slight squint in one eye. He can't wink, though he does 'wink his eyebrows' as he says, which is basically a very big blink when he tries to wink. One side of his face is more mobile than the other, so except with a wide grin, his smiles have always been a bit lopsided.

The retardation is not immediately evident in conversation, in the subjects he can talk about. He was always coherent within those, though sometimes approaching topics from very different perspectives which needed deciphering. We tried to teach him to read and write, but he could not. He could count up to three.

So yes, long story short, he is visibly disabled.

Wherever we've lived, in public spaces John attracts curiosity. At best it's mild double-takes, sometimes, often, a nudge to a companion asking companion to gawk as well, sometimes open pointing. I've heard, often, in different places, the local lingo for 'mad.' This made me furious as a child. It still gets to me, even though I tell myself that this is just a result of poor education in this country about mental disability, that you can't blame individuals for culture they've imbibed.

In closer interaction, he's often talked at or talked around or talked about rather than talked to. Sometimes this is awkwardness: people don't know if he understands and ask us, his caregivers, about him. Mostly these questions are 'what is wrong with him' and 'was he born like this' and the like. This would inevitably then go to pity. They see the disability, recognise that it handicapped him, but they so very rarely look beyond the condition at the person

(All John's favourite people always talked to him, never condescending or dumbing down, 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.)

Over time, you reach a point where you don't want to explain any more. You don't want to be angry. You definitely don't want concessions. All you want is acceptance, for your loved one, for your family. That this is just their normal, that it doesn't need pity, or sorrow.

Another reason I haven't spoken publicly (by which I mean on some public platform; of course I've spoken to friends) is kind of related. You don't want to be seen as seeking attention, seeking pity or concessions.

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.

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.


When I re-read this, perhaps I'm not clear. So let me try again, with a little help from a friend who I won't name, for reasons that, I hope, will be apparent.

This is mostly unedited from a Twitter DM chat a couple of years ago.

My daughter goes to [school name]. She is learning disabled. We deal with a lot of discrimination, so didn't want to make it public :-) [school name] is the first school where she is welcomed. And treated as "normal". For parents, that alone is good enough.

My brother has cerebral palsy and what was called retardation when he was diagnosed. So I know to some extent what you mean when you talk about dealing with discrimination.
Friends know, but I don't usually talk about it publicly. Different reasons than yours. Don't want it to be seen as sympathy-seeking.
Because it's really not something I want. Sympathy, I mean. It's just a fact that he has a child's mind & a body that has big limitations.
And that he needs care to take care of even basic needs.

Same here. I totally understand. All parents like us want is acceptance. No sympathy or special favours.

Autism, from what people have told me, is a really tough disability to deal with. The kids have no outward signs of any disability.

Yes. That is correct. My daughter is borderline autistic. But if you see her, she's like the most intelligent kid. Hence, untrained teachers can't deal with such kids. That leads to even more conflict between student and teacher. Ultimately results in low self esteem.
Same with ADHD.
The discrimination in the previous school was heartbreaking. We finally pulled her out last year when she was in [schooling year]. Short of beating her up, they did everything possible, including humiliating her every day. So much that she refused to go to school.

This is all we want, the families and caregivers to people with disability. (I deliberately do not try to speak for people with disability, because I do not know that world.) To not be 'special.' To not be a symbol for courage. To not be the disability.

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