Koku & Me – The roles we play

When I came into the world, Koku Bhaiya was already in it. He was a fact for me, not an aberration. There was no questioning why he was different. His uniqueness was as natural as the fact that a door is different from a window, or a mango tree from a rose bush. The world was, and so was he.

Realizing Difference

It was only when I started school that I began to notice differences. Though he was a class ahead of me, I had to go pick him up after school. I would find him sitting there, bored, and we would walk home together. On the way back, some children would call names and bully him. That made my blood boil. I don’t remember if I ever stood up to them, but I should have. Since then, I have been a strange mixture of protective elder sibling and mischievous little sister.

Sometimes, I feel like Koku and I are eternal children. His childlike nature is so real that it makes life feel endless, as if there is no rush to do anything.

Koku was born in 1976 in Uttar Pradesh, at a time when there was little understanding of Down syndrome or developmental disorders. Early intervention, available to children now, wasn’t an option then. He was placed in a school where children with all kinds of developmental disabilities were grouped together, conveniently separating the world into “normal” and “not normal.”

In truth, all of us—Koku, me, the children in his school, the children in mine—had a spectrum of abilities, talents, and personalities. A system that tested us once a year with exams did a disservice to the beauty and wisdom inherent in every child.

What Is Normal?

One of the greatest gifts I have received from Koku is the realization that “normal” does not exist the way the world defines it.

I often laugh, self-ironic, at people who bear the label of normal—people like me, sitting in cubicles, away from loved ones, backs bent over computers, wearing fake smiles, pretending our work matters while the planet suffers, families disintegrate, and happiness levels plummet.

Koku, on the other hand, spends time with my parents, relaxes, socializes, makes people laugh, enjoys his chai, meets old friends, and sleeps in the sun every winter. Who is truly “normal”?

People who pity us have never known the joy of being around someone who loves freely, without barriers. Koku loves everyone—from househelp to drivers to guards—as much as he loves his sister. His love is expansive, not limiting.

The Effort Behind the Joy

Of course, this freedom and joy are supported by my parents’ tireless care. They cannot leave whenever they want; as they grow older, caregiving becomes harder. Every time Koku’s health falters, it requires tremendous effort to nurse him back. Multiple doctors, discussions of side effects, constant vigilance—yet they do it all with smiles.

Even at fourteen, I understood that if someone needed to care for Koku in the future, it would be me—not out of duty, but out of love. I have never felt I was sacrificing anything by staying close. I would only feel miserable and guilty if I weren’t there when needed.

Digging Deep: Stories Untold

After film school, I decided to document Koku Bhaiya’s life through a movie. During interviews, he shared something he had hidden for 25 years: he had been sexually abused at age 12 by our house help’s wife. My parents had acted quickly, and the “spell” over Koku was broken. The revelation showed me that behaviors often attributed to a developmental disorder may have entirely different roots. With parental love and care, Koku became lighter, more joyous, and naturally confident.

Learning from Koku Bhaiya

Koku is a teacher of love, joy, music, dance, drama, and humor. He shows that it is okay to express discomfort, ask for help, or seek connection. He demonstrates respect, the joy of giving and receiving, and the power of laughter and a smile.

He fearlessly approaches people, shaking hands, speaking nonsensical words that make everyone laugh. In him, I see the magnificence of a being who plays a role in life’s lessons while teaching us about love, humor, and presence.

I once dreamt I was walking up a grand white staircase, suspended in the sky. At the head of the staircase stood Koku Bhaiya, resplendent in a purple robe, his aura radiant. Behind him was a powerful, queenly feminine presence—his other half. He welcomed me with a big smile, as he welcomed me into this world, by coming first.