Feature: Koku & Me – The roles we play

It was only when I started going to school that I realized that despite the fact that he was one class ahead of me, I would have to go pick him up from his classroom after school got over. I would find him sitting there, looking bored out of his mind, and then we would walk home together. On the way back, some children would call out names and bully him. That made my blood boil. I don’t remember if I gave it back to them, but I should have. Since then, I have been a strange mixture of protective elder sibling and naughty little sister.

Sometimes I feel like ‘Koku’ and I are eternal children, because the part of him that is childlike is so real that it makes me feel like life will go on forever and that there is no tearing hurry to do anything. Koku was born at a time (1976) and place (Uttar Pradesh) when there was no real understanding of Downs syndrome, least of all how it was different from any other kind of developmental disorder. So there was no opportunity for him to receive the kind of early intervention that is available to kids now. He was later put into a school where children with any kind of developmental disability were all bundled up together, and very conveniently for everyone, the world was divided into kids that were ‘normal’ and kids that were not.

When in truth, all of us, Koku, me, the kids in his school, the kids in my school, were children with an entire spectrum of differing abilities, talents and personalities. A system that put us into boxes and demanded that we be good at certain things. Proving that by writing exams once a year, was a system that did injustice to the beauty and wisdom in all of us.

What is normal?
One of the biggest gift that I have received from Koku is that the concept of normalcy does not exist for me anymore in the way it does for the rest of the world.

I laugh, self ironically of course, at a world in which the people who bear the burden of the label of normal, people like me, are the same people who sit in cubicles everyday, away from their loved ones, backs bent over computers, wearing fake smiles at meetings, pretending that the work we do is important while, our planet dies, families disintegrate and happiness levels plummet. Koku on the other hand, spends time with my parents, relaxes, socializes, makes people laugh, enjoys his cup of chai, looks forward to meeting old friends and sleeps in the sun every winter. Please tell me who is ‘normal’.

People who look at us with eyes of pity are people who have never known the joy and the privilege of being able to spend time around someone who has no barriers to love, who loves the househelp, the driver and the guard as much as he loves his sister. It is freeing, not limiting; it is expansive, not restrictive.

But perhaps I over-romanticize.
I cannot deny the hard work, commitment and effort that my parents have put in, and continue to do so everyday, in order to take care of him. It is not easy. They can’t just leave and go wherever they want, like retired people should be able to. As they grow older, it becomes harder and harder for them to take care of him and of themselves. Every time Koku’s health falters, it takes tremendous effort to nurse him back to health. There are visits to many different doctors and discussions on the potential side effects of every treatment possibility because he has multiple health issues. And yet they do it with a smile.

When I was fourteen, I once attended a conference where many parents were expressing concern around not knowing who will take care of their children after them. I found that rather strange. Even then, I had no doubt that if it ever came to a point where someone other than my parents needed to take care of Koku, it would obviously be me. And it wouldn’t be because of duty or because I would need to do the right thing, but only because I love him.

My mother often worries that I refuse to consider opportunities around moving to better jobs in the US only because of my attachment to all of them. But I am not sacrificing anything. I would be miserable and guilty in a far away country if I couldn’t be there when needed. I do it for my own joy, not for anyone else’s.

Digging deep
When I was younger and straight out of film school, I decided to document Koku Bhaiya’s life through a movie. Because I was interviewing him, asking him questions and digging deep instead of just fighting over the remote control, he shared with me something he had kept under cover for twenty five years. When we were young, we had a full time house help, whose wife lived with him too. She had sexually abused Koku when Koku was around 12, and used the anger and fear that must have generated to control him.

That was the only time Koku has ever lashed out at my mother, refusing to listen and even trying to hit her, while fawning over the help and his wife. My parents had asked that couple to leave soon after, and it was like a spell had broken over Koku. Everytime they were mentioned after that, he would get very very angry. And yet, he carried this within him for so long, and only shared it with me because I took the time to sit with him and ask him about his life. It is very difficult for me to write this, and I did not include that interview in the movie, but it’s been ten years since then, and the world is already having difficult conversations more easily.

I think it is important to share this, because many behaviours, that especially in the case of differently abled people, may be seen as originating from their so called ‘disorder’, may actually be stemming from something entirely different, like misbehaviour or abuse being directed towards them. But because the label is so big for us, it blinds us to the fact that any child would be angry and violent if mistreated. Since then, my parents absolute love and care for him has made him much more lighter and love filled, which must have eased a lot of his residual pain. He is naturally confident and naturally joyous.

Often, he will clap his hands and laugh for no reason at all. But that makes it easy for everyone to look past the other stuff. To say that he is merely ‘happy’, even though he is mostly happy, is to over simplify a complex human being with an entire range of emotions. It is easy for us to label someone as having ‘Down syndrome’ and then use that label to define our relationship with them, but it closes down the potential and possibilities that exist if we were to just see them simply as other people, albeit a little more different. I need to try harder.

I am too used to responding to him in a certain way. I often ignore what he is saying, just because he is being repetitive. I never ask, “Why is he feeling the need to repeat himself?”. Possibly, he is just seeking a connection, and needing to make sure that he is heard.

As someone who is interested in how all the children of the world are treated and ‘educated’, I see that how we treat an adult with special needs, is how we also mostly treat children, believing that we know more than them and can tell them what to do just because they are dependant on us.

Koku Bhaiya has always been my teacher, showing me the power of love, of joy, of dance and music, drama and comic timing. He shows me how natural and easy it can be to demand something, and get it. That there is no shame associated with receiving support and care. That it ok to shout and scream in order to express discomfort or pain one moment, and smile and ask for chai the next. That anyone is approachable with a smile and a handshake, and that everyone deserves respect and acknowledgement.

In situations where I might hesitate to approach an important person, or feel debilitating shyness to speak out in front of a group of people, Koku will simply go up, shake hands and say something irrelevant or nonsensical that will make no sense to anyone and yet make everyone laugh. That dream showed me that he really is who I have always suspected, a magnificent being playing a role, and teaching us that everything is better when taken with a sense of humour, a pinch of salt and multiple cups of chai.

I once dreamt that I was walking up a grand white staircase, suspended in the sky. At the head of the staircase, stood Koku Bhaiya, resplendent and royal in a purple robe and an aura around his head. His true intelligence, his full sense of self, and his authority and power were shining forth. He was magnanimous and he was waiting for me with a big smile. Behind him, was a powerful and queenly feminine presence, his other half. He was waiting to welcome me, in the same way that he welcomed me into this world, by coming first.