A Siberian Omission
“We must first of all eliminate Siberia, the northern slope of Asia for it lies outside of the scope of our enquiry. The whole character of Siberia rules it out as a setting of historical culture …”
—From Hegel’s lectures on the philosophy of world history.
A cherub with hair rolled and fastened in two above his ears. That was my little brother Luv that summer when I was still seventeen and he had turned three. I was to take an exam in New Delhi to enter its premier medical college and the family decided to make it a trip for us all. Dad drove us in our little red car, newly purchased and our first, with mum and us four kids. We took to the road covering the three hundred kilometres to India’s capital. It was our first trip by road to Delhi.
I remembered only the rosy tints of that trip until I started writing this. We stayed in an army mess with a garden. Dad had served in the army. We could get accommodation in these large bungalow like buildings where we slept with open windows under whirring fans and ate mediocre but welcome food as the plains of north India blazed in the summer fury. One night there, Luv had a seizure, his first ever. He was taken to the nearby army hospital where he may have stayed a night with mum. Not much imprints in my memory to vouch for this.
Luv had not spoken a word yet in his four years. His hearing had been tested and found not wanting. Tongue tie had been ruled out. Mum was sure she had heard him say mama once, but no one has seconded that.
He was hyperactive, having to be restrained with a leash on his leg from running up the steps in our house, or out the gate of our fenced home. Once mum had watched in horror as he walked on the wall bordering our terrace.
As a schoolgirl few years before, I had taken to Linda Goodman, an American astrology writer introduced by a sophisticate in class who I had befriended. I revelled in Goodman’s poetic prose. Geminis are naughty, they slip through their parents’ grasp, like their ruling planet Mercury does through fingers I read. They exude charm. Fitted Luv to a T. I exulted. He was the most beautiful child many people had ever seen.
We were visiting to pick my mum and brother up in the army hospital ward that June week in Delhi. I can still see the iron bed frames, the crisp white sheets, the smell of some disinfectant that was universal in every military hospital and dental clinic of my childhood. I remember also the white sarees with blue borders of the ward’s helping women who had a gentle air. They also stared solicitously. I will not forget the words that pierced me. On a clipboard at the bottom of my brother’s bed was handwritten: seizure, mental retardation.
***
My mother’s uncle was our acting grandfather in childhood. Her own father had died early. One day I overheard his wife tell mum how he had cried when he saw my dad rein in Luv when we visited. “He will have to care for him for life,” the weeping man had lamented. Weeping for my dad, not as much for Luv who was also non-verbal. He was to remain so.
When Luv was a teenager, and I was married, my husband remarked in his productivity oriented voice that he should be institutionalised. He was hampering my sisters’ academic achievements. How could they study in the house with his hyperactive antics. By now we had a word to describe his difference from us: autism. But that was all. No further information. My pediatrics textbook in medical school in the nineties did not have that term.
A blue and white striped plastic wristwatch was my prized possession in my late teenage years. One day I forgot to put it on a top shelf. It was tossed and crushed. I cried. I cursed my brother. It was a relief to return to stay peacefully in my college hostel despite the bad food and cramped quarters.
The Red Cross school in town had special kids who were kept in one room for the day. The staff complained to my parents that Luv wanted to run out of the room when others did table top work.
In another school run by Catholic nuns which my sisters went to, there was a special wing where little boys with Down’s syndrome and other intellectual disabilities sat in a room side by side, and were hit when they tried to run around. Luv went there for some time in his little blue shorts and got hit when he moved.
One nature treatment my parents heard of involved an hour’s drive from town for steam treatments in a wood container for Luv. I dread to ask my parents how many he was made to endure.
Luv never learnt to read. My parents moved to a house with a park in front. He would ride standing in front of my dad on Dad’s scooter. Sometimes he would go missing from home and a rickshaw puller would get him home, Luv seated blithely on his rickshaw. The neighborhood got to know him well. Once a search party went far with no results, leading to many anxious moments I only heard accounts of as I had emigrated to the new world. Dad had to visit the police station to seek help tracing Luv that day.
***
Luv was seventeen and by now calmer, perhaps resigned, when he accompanied Dad to visit me in my new country. I chose for them to arrive in Los Angeles where I was to finish a work conference and receive them.
Seeing pictures of that happy time, I see Dad holding Luv’s hand firmly in all the pictures. In one restaurant, we are eating outside, and Luv has his knee flexed, thigh on dad’s, dad’s hand still on his leg lest he may walk around.
In a Persian restaurant, I was upset at dad as Luv would not stop making noises inside. Luv was an inconvenience we did not try to communicate with. One morning, as Luv slept, Dad and I drove to the pier for a San Diego harbor excursion. Luv was asleep when we returned. Dad and I then went for a walk in Balboa park, delighting in birdsong and Spanish architecture.
It was later that I learnt the autistic must be prepared to face new surroundings or ,at minimum, told they are heading here and here with us. Luv was just picked from his own country and flown to another where the people and roads, the food and language, the weather and cars, changed in a flash. That could be one Kafkaesque nightmare for any of us.
In the scrapbook I made, Luv does smile next to the Pacific in one picture by Dad who is also beaming. In Sea World, I have written beside Luv’s solo picture where he stares into a dolphin pool in profile: “Luv contemplating petting.”
I had no inkling then that there was something called animal therapy for the autistic. I was in my thirties and a trained doctor.
Years later, when Luv was in his thirties, I wrote in my journal on Dec 3, 2018:
It was World Disability awareness day, and APAAR * had partnered with two other NGOs’ working with the autistic and other intellectually challenged, to speak with paramedical workers in a village health centre.
Luv did not get up to go to work. I believe it was his silent protest at the sheer hypocrisy of it all. We have spent the better part of our lives with him neglecting his feelings.
**
Writing takes me away from the crucial work of planning for my NGO (non-governmental organisation) in these pandemic times. In the sheltered workshop which is part of this NGO that I have started in India, eleven young men and one young woman come six days each week.
They meet peers, they dance to music, they make tea and serve it with snacks at tea time, joke if they can talk, play cricket in their building’s playground, or catch or kick ball. Some just sit on benches under the lone big tree. Many have no outings outside this time, their parents are embarrassed to take them out. Once a month, we all go to historic forts, parks and other picnic spots. They also make paper bags and handicrafts in our workshop and get the profits. Luv likes to bead traditional door hangings. They had just started marigold flower petal plucking to make natural colors for traditional welcome drawings called rangoli.
One of the last pictures I had on my phone before we had to shut up for the great Covid-19 lockdown was one with Luv and his colleagues sitting on tables littered happily with soft orange marigold flowers. It was a step forward, a new idea born as wood box painting was halted. I see the most hesitant worker, 51 year old R, eagerly clipping petals with matching orange scissors from the old flowers we gathered from temple deities’ alcoves across town. These were picked up in gunny bags by the workshop manager ever so often. I can smell the fragrance of marigold in that picture I was not part of.
Luv, R and their friends in the workshop get to practise social skills to fit in and perhaps then to be loved and elevated to human. They had been confined inside their homes since March as the great pandemic lockdown continued in India.
I now divide time between two continents. During the first months of the Covid pandemic, I saw a higher power helping me aid the voiceless in just the miracle of generating this essay amidst this whole turmoil. One evening, I walked up to our third floor terrace with Luv. He avidly followed me and matched my brisk walk step to step, steering several feet clear of the terrace walls. He puts away the laundry for mum, and sits placidly to dinner with us. He has the patience of ancient rocks. He does not spare any ice cream in the freezer and has a budding paunch, a new for him.
The personas and lived experiences of the autistic and other differently abled have been elided from literature and medical textbooks. It is hard to align emotionally and intellectually with someone so unlike the normative and an attempt to understand them- the other- and write on their behalf can invite skepticism about precision. Loved ones are too burdened with their care. Writing after all requires the luxury of repose few caregivers possess. One can however get oral histories and illustrate their lives and heavy burdens.
My sister wrote in a disability blog on the experience of the disabled in the Covid pandemic and I choose this account:
“Suddenly, everything stopped. And she was in a state of shock”,says her mother, Fatima D’Souza. “Cookie[Ephilia’s nickname] cannot speak and she started expressing [herself] by screaming and yelling from the window, so loudly she was screaming that my friend from four buildings away called to inquire. I told her that she has not accepted this sudden change. She is not seeing anybody. Only birds are flying around. No human beings. So, I kept singing while cooking so she has some entertainment.” Eventually, Ephilia calmed down after her mother prayed. “But the first few days were very bad for her. I had no control over the shouting”.
Exiled from literature, these who were born “far from the tree” do not find mainstream voice. Hegel’s extirpation of Africa and Siberia from his writings caused the writer Dostoyevsky considerable distress, writes Hungarian writer Laszlo Foldenyi in an essay I read masked with visor on while flying east over the Atlantic in July of 2020: Dostoyevsky might have felt—and justifiably so—that he had not only been exiled to Siberia, he had been expelled into nonexistence itself.
Luv’s sisters yearn to tell stories to bring him and others into existence.
*APAAR is the name of the NGO I founded in India in 2014 to rehabilitate adults with autism and other intellectual disabilities.
Back to Top of Page | Back to Essays | Back to Volume 17, Issue 2 – Winter 2023-2024
About the Author
Navneet Bhullar is a physician and disability activist who makes Indian Punjab and central Pennsylvania her homes. Her poetry has been published in the Citron Review, Cagibi, Clepsydra, Paddler Press, Last Stanza poetry journal and Open Door magazine. She enjoys arranging cut flowers for her dad and walking in the mountains of both her home continents.