‘People with intellectual disability are not problems to be solved, but people to be supported in achieving their goals and aspirations.’
– Rick Rader, MD (Director of the Habilitation Centre at the Orange Grove Centre in Chattanooga, USA, where he works on healthcare delivery systems for people with intellectual and developmental disabilities).
AS I approached the woman’s front door, her voice echoed through the air, filled with frustration and impatience. “Stupid!” she shouted, a phrase that had become all too common in their household.
It was a scene I had witnessed countless times before. The woman’s daughter, intellectually disabled and unable to control her actions, often unintentionally provoked her mother’s temper. The weight of the situation was evident in the mother’s tired and haggard appearance, worn down by the daily struggles she faced.
My memories of the girl’s condition date back to my childhood and elementary school years, between the years 1960 and 1965. She was the only mentally challenged individual in our village, and it was during this time that I became acutely aware of her condition. Our family had interacted with hers often like the day my mother sent me to borrow a needle from the mother. In her haste to replace a few shirt buttons, my mother had misplaced her own.
But it was a week before that incident that left a lasting impression on me. The girl, Bey, had passed by our house, making her way to a mountain stream behind our home, perhaps to bathe. My younger brother and I couldn’t help but notice her peculiar mannerisms, the way she mumbled to herself and her unconventional head and hand movements. In our innocence, we laughed at her, unaware of the impact it would have on our mother.
In her wisdom, my mother reprimanded us, her words laced with complexity and depth.
“Do you think you are a normal boy?” she asked, directing the question at me. My younger brother, not yet in school, was spared from this interrogation.
“Yes,” I responded confidently, unaware of what lay ahead.
“Did you make yourself normal?” she continued. Her voice was gentle yet piercing.
I was at a loss for words, unsure of how to respond.
“Did you do something to deserve being normal?” she pressed further, the weight of her words sinking in.
Again, I had no answer, my head shaking slowly in shame as silence enveloped me.
The profound impact of my mother’s words resonated deeply within me, forever altering my perception of Bey’s intellectual disabilities.
Though I never knew her true name, I surmised it to be Rebecca based on the nicknames used by her family members — Becca or Bika. However, she seemed to prefer Bey, the name I had given her. She responded promptly whenever I called her by it. She was about my age but was smaller than me and looked undernourished.
One day, as I diligently pulled weeds that had infiltrated the vegetables in the small food forest my father had cultivated within our spacious compound, Bey approached me.
Being alone at home was a norm during that time of year, from September to December when my parents left me to fend for myself (circa 1963-1965) while attending the village’s primary school.
This arrangement allowed them to dedicate their full attention to our paddy farm without having to endure the daily trek of miles to and from the fields.
Despite my earnest efforts, I found it arduous to comprehend Bey’s speech. Amidst her jumbled and mumbled words, the only discernible term was “eat.”
“Eat! Eat!” she repeated persistently.
Perplexed, I gazed at her with confusion. In response, she gestured with her right hand, mimicking the act of putting food into her mouth.
Confident that I understood her intention, I peeled a young cassava tuber freshly unearthed from the ground. After washing it, I handed it to her. Unexpectedly, she promptly discarded it and slumped to the ground, weeping inconsolably.
Fortunately, an elderly woman passing by witnessed the entire exchange and intervened. She communicated with Bey through a combination of hand gestures and peculiar utterances. Shortly after, she inquired if I had any food to offer.
I had a small amount of leftover rice from earlier in the day when I had cooked, but there were no accompanying vegetables or side dishes.
When I presented the rice, Bey forcefully snatched it from my hands and hungrily devoured it. At that moment, it became clear to me that she had been asking for food all along.
Further conversation with the elderly woman revealed that Bey’s family had departed for their farm at sunrise, neglecting to leave any sustenance for her. It was no wonder she had been famished. She lacked the knowledge of preparing meals for herself.
Upon learning this, a resounding question echoed within my mind: “Why?”
This query lingered in my thoughts for an extended period, haunting me with its implications. The sight of a cassava tuber would always evoke the poignant memory of Bey’s hungry countenance. From that moment onward, my perception of cassava tubers has never been the same. Unconsciously, I tend to associate it with hunger, poverty, famine, and general hardship.
I often watched Bey as she walked along the path that led to the mountain stream behind our house. On those occasions, I couldn’t help but ask futile questions in my little head about the fate that had dealt her a cruel hand, burdening her with an intellectual disability that set her apart from the other village children.
From a tender age, Bey faced a world that seemed cold and unwelcoming. The children, ignorant of her condition, couldn’t comprehend her differences. Their lack of understanding manifested in cruel taunts and hurtful words. They mocked her for not being able to grasp the simplest tasks or comprehend their harsh vocabulary.
On one occasion, a group of children, devoid of empathy and intoxicated by their callousness, encircled the trembling defenceless figure. Their once-carefree laughter had transformed into malicious echoes, taunting and jeering as they revelled in their malevolence. Their eyes, once bright with the glimmer of childhood innocence, now glowed with a disturbing hunger for power and dominance.
Like venomous, razor-sharp daggers, their words mercilessly cut into the fragile spirit of the child. The taunts were relentless assaults on what little confidence their victim had.
Her invisible wounds were swiftly accompanied by visible brutality as the tormentors unleashed their pent-up aggression upon her. They pinched her delicate skin until it bore the marks of their cruelty, leaving behind painful blue-black bruises. Sometimes, in moments of heightened cruelty, they would even strike her fragile frame. Her feeble attempts to defend herself were futile.
With her wide eyes filled with innocence, Bey seldom cried out loud, for she could not comprehend the reasons behind their torment. Instead, tears silently streamed down her face, tracing the path of her untold suffering. She could not understand why people were so mean towards her.
In her anguish, she would often retreat to the solace of nature. One or both of my parents often found her seeking comfort in the mountain stream while other village children and I were in school. She loved building little mounds of sand that she decorated with colourful pebbles, sticks, leaves, and wildflowers.
On those occasions when I happened upon her playing on a sand patch where the stream bends, I would observe how, whenever a powerful gust of wind swept through the towering trees that lined the stream, she would instinctively raise her gaze and a gentle smile would grace her face, as if in recognition of the wind’s whispered secrets. For her, nature was a sanctuary where she could briefly elude the harsh realities of her existence.
Even in her tender years, she loved to play with the sand so much that she often refused to leave when it was time to go home. There were instances when her busy mother forcibly dragged her over the sand and pebbles to get her to leave. The mother could never pick her up and carry her as she tended to wriggle violently in her arms.
The weary mother, burdened by endless tasks, would struggle to pry her away. The weight of responsibility bore heavily upon her shoulders, her once gentle spirit eroded by the ceaseless care for her intellectually challenged child. With each passing day, her patience waned, worn thin by the growing size and unruliness of Bey whom she could no longer easily contain.
For many years, I held onto the belief that Bey was “mentally retarded” until I learned that such terminology had become outdated and insensitive. Today, we prefer terms like “intellectual disability” or “developmental disability” to describe such conditions.
My mother’s message was clear and enlightening. The girl had done nothing to deserve her disability, just as my brother and I had done nothing to earn our cognitive abilities. Her words raised crucial questions about how we value and treat individuals based on factors beyond their control.
It is all too easy for society to marginalise and discriminate against those with disabilities, simply because they are different. Yet, this unfair treatment is a grave injustice. We must strive to build a world where kindness, respect, and dignity are extended to all, regardless of their abilities or disabilities.
Recognising the inherent worth of every individual, irrespective of their cognitive or physical capabilities, is a crucial step forward. We must see people for who they are as human beings, refusing to define them solely by their differences. Embracing inclusivity and accessibility is essential, ensuring that everyone can actively participate in society.
In essence, Mother’s profound wisdom conveyed a powerful message: We should treat others as we wish to be treated, with empathy, compassion, and understanding. Her words serve as a reminder that true strength lies in our ability to uplift and support one another on this journey called life.
The views expressed here are those of the writer and do not necessarily represent the views of the New Sarawak Tribune.
