All About Lulu

Horizontal Identities

In Chris Kaposy’s book, The Beautiful Unwanted, Down syndrome in Myth, Memoir and Bioethics, he talks about his son Aaron, who “…doesn’t seem aware that he has Down syndrome. He has never asked me what it is. By involving him with other kids who have Down syndrome we have perhaps fostered an identity for him. Aaron is a person with Down syndrome.”

On a fourteen-plus hour flight to Cape Town, South Africa, where I was taking Lulu, my sister with Down syndrome to visit my daughter, I came upon a Bollywood film called, Ahaan. I must have jumped in my seat when I saw that the film’s protagonist was a twenty-five-year-old man with Downs. “Lulu,” I cried as I pulled off my earphones. “We have to watch this film.”

Played by actor Abuli Mamaji, the film, (made in 2021), is set in central Mumbai, where Ahaan lives in an apartment building and befriends many of its inhabitants. One in particular, is a man with obsessive compulsive disorder, who, at first, rejects Aahan’s friendship before he realizes just how much they have in common.

“Lulu, can you believe it?” I exclaimed, remarking on the fact of having an actor with Downs at the center of a commercial Bollywood film. Spurred on by my enthusiasm, Lulu nodded, smiling from ear to ear as we watched the film once, then twice, but it wasn’t long before I could see that Lulu had absolutely no identification with the character of Ahaan beyond my own persistent repetition. She thought Ahaan was cute and the film was something fun and set in India, where she was born.

Marynka Natalya Leonarda, nicknamed Lulu, was born in the South Indian hill station of Kodaikanal. Perched against a cliff, with sweeping views of the mountain valley below, the modest stone hospital where my mother gave birth to Lulu over fifty years ago was built by Christian missionaries at the turn of the century. A black and white photograph reveals my Polish mother emerging from the missionary hospital with her long braids, surrounded by a line of Indian nurses wearing white caps. It must have been chilly that June morning as they were in sweaters and the new-born who my mother named Marynka, was wearing a woolen hat.

You have a special sister, the nurses said to me, with half pride and half pity, showing me the pearl of a girl, whose features were unmistakably those of a child with Downs.

Decades later, on a trip to South India, I made a pilgrimage to Kodaikanal and the hillside hospital, surrounded by tall trees with a yellow-grey bark. They were eucalyptus trees, I realized, and the birth of Lulu had somehow collided with their musky-minty scent. I can clearly remember reading the handwritten notes in the hospital’s ancient ledger verifying Lulu’s birth. A line of blue-ink carefully documented Lulu’s weight, appearance, manner, and time of her birth. Down syndrome was written next to ‘appearance’ and signed by the doctor, who was semi- retired but came to say hello when he heard I was visiting from afar.

Born three months prematurely, my father still tells the story of his frantic arrival in Kodaikanal a day after Lulu was born and of finding his youngest daughter placed in a bassinet, lying on a row of whiskey bottles filled with hot water and covered with a woolen blanket. The hospital had no incubator. The impact of my father’s story, recounted many times, was to confirm Lulu’s goddess-like strength. After all, a girl who could survive on a bed of whiskey bottles was some girl.

But what did it mean to have a sister with Down syndrome? A sister who was so different in every way and whose needs commanded continuous attention and care?

Further exploring this idea of his son’s identity, Kaposy refers to writer Andrew Solomon’s book on parenting, Far From the Tree, where Solomon writes about horizontal identities. “Race, religion, language and nationality are the customary verticals which are passed from parent to child. Horizontal refers to traits that are foreign, either inherent, like a disability, or acquired, like criminality.”

On that incredibly long flight to Cape Town and since, it occurred to me that my desire for Lulu to recognize herself in the character of Ahaan was more a reflection of myself. I wanted Lulu to identify with Ahaan. Later, I wondered, what did it mean to me that she made this connection? Why was it so important? Slowly, I realized that for all of my life, Lulu has been at the center of my identity. With the death of my mother in my twenties, Lulu had become an inextricable part of me. I slipped easily into a maternal role, taking on every challenge that Lulu faced as my own. I could never forget Lulu standing outside our house after my mother died, asking, “What will happen to me now?” as tears streamed down her face.

As I reflected further on the film, I understood that Lulu and I were/are two parts of the same—except that we are not. I understood that having Lulu identify with Ahaan was my way of separating, of wanting her to understand that, like Kaposy’s son, Aaron, she is, “a person with Down syndrome.” And, perhaps, it was also a way of reminding myself, that I am not.

Yet, what I also knew in the deepest, most intuitive sense, was that Lulu is simply who she is. Her sense of identity, while not, “a person with Down syndrome,” is as a member of not only my family, but a family at large, a member of the community where she lives and of the world. In Solomon’s book, identity and difference exist as a fact in society and as family members, we are forever reaffirming that divide.

When I said goodbye to Lulu at the airport after the most recent Thanksgiving break, she gave me a cursory kiss. “I can do it,” she said smartly, handing her boarding pass to the agent and tossing her head confidently, as she prepared to head through the gate.

“Oh, come on,” she said, rolling her eyes at me. I stood to the side as she gestured that I could leave the airport already while she joined the line of passengers, fitting herself neatly into the middle. Then she adjusted the many colorful bags she wears and waved a final goodbye.

I had a moment of hesitation before I turned to leave, watching as Lulu quickly fell into conversation. That day, it wasn’t merely a question of leaving the airport, it was struggling to accept something bigger. It was something to do with allowing Lulu to be who she is, without trying to see myself or anyone else reflected in her image. It was something about not trying so hard to fix things.

I thought about the character of Ahaan. His greatest desire was to escape the protective yoke of his parents. He wanted to be in the world, to meet people and most of all, he wanted to get a job—an office job. In the film’s penultimate scene, when Ahaan manages to escape his family with the help of his friend and neighbor with OCD, they are driving to a job interview.

 “Okay, let’s practice,” says the neighbor. “Chest out. Stomach in. Take a deep breath,” he insists as Ahaan sits up, trying to look official. “They’ll ask you about your dreams, your desires, your ambitions. Now, what if they ask you what you want to be in ten years. What will you say?”

There is a brief pause before Ahaan replies, his face alighting with a smile.

“Ahaan.”