This story begins with the unexpected popularity of a single tweet. It’s the summer of 2021, and my husband enters the kitchen, asking if I’ve seen a post from an English theater director that’s going viral on Twitter. Intrigued, I rush upstairs to my computer, shouting out, “How can I find it?” He assures me that I’ll find it.
In a matter of seconds, I locate the tweet—a picture of Joey Unwin, the director’s nonverbal son, standing near the sea with a gentle smile. You may have come across this photo as well. What makes it remarkable is not only the fact that it has garnered over 80,000 likes and 2,600 retweets, but also the overwhelming response it has received. Parents from all over the world have shared pictures of their nonverbal and minimally verbal children in reply to the tweet. The photos depict a vibrant tapestry of these children’s lives—showcasing their joys, passions, strengths, and unique personalities. Some children are young, some are older, some are accompanied by pets, while others enjoy swings. The range of emotions captured in these photos is vast, from broad grins to more contemplative expressions. One child proudly holds a tray of homemade Yorkshire pudding, while another cuddles with their mother on a picnic blanket.
For nearly an hour, I immerse myself in scrolling through these heartwarming replies. It slowly dawns on me that my husband must have directed me towards this thread not only because of its unusual nature in the realm of Twitter, but also because it strikes a personal chord within me.
You see, I have an aunt whom no one openly discusses, and she herself can barely speak. She is currently 70 years old and resides in a group home in upstate New York. I’ve only met her once, and until this very moment, I had completely forgotten about her existence.
It’s astonishing how much we conceal from ourselves and others. It’s even more astonishing how, in the past, we hid away individuals like my aunt and countless others. As I look at all these photos of nonverbal children, brimming with life and love, their parents sharing their stories and celebrating their children’s unique qualities, I realize that I know absolutely nothing about my aunt’s life. She has become a fading shadow, an aging ghost.
The revelation that I had a younger aunt struck me like the discovery of a new planet. Suddenly, everything fell into place, explaining the invisible gravitational forces that had shaped my family’s dynamics and actions throughout the years. Finally, I understood why my grandfather spent countless hours volunteering at the Westchester Association for Retarded Citizens during his retirement. I also understood why my grandmother would yearly visit the local department store to buy Christmas presents, despite our Jewish background. Little did I know that my aunt resided in a group home where the residents attended church every Sunday.
My mother, too, underwent a profound experience. At the age of six and a half, she watched as her only sibling, nearly five years younger, was taken away from her. It would be forty years before they would see each other again.
It’s astonishing how rarely we contemplate who our parents were as individuals before we entered their lives. We often overlook the dynamics and influences that shaped them, the defining traumas and triumphs of their early years. Yet, how can we truly know them and show them compassion and understanding as they age if we remain unaware of their past?
I was twelve years old when my mother revealed the existence of my aunt. We sat at the kitchen table, and I pondered aloud what I would do if I ever had a child with a disability. It was in that moment that my mother decided to share her story.
Her name is Adele. With her red hair, she seemed like an oddity in our family. However, I later discovered that my great-grandmother also had red hair, though I only knew her as a white-haired woman obsessed with soap operas and cigarettes. My mother explained that Adele was profoundly retarded, as described in textbooks and medical charts of that time. Adele’s condition stemmed from her skull bones fusing prematurely during infancy, resulting in a smaller brain. It wasn’t until I met her sixteen years later that I truly grasped the physical implications: her head was significantly smaller.
Meeting someone who resembled my mother, yet with distinct features like red hair and a smaller head, left me astounded.
My grandmother told my mother that she sensed something was different about Adele from the moment she was born. Her cry was unusual compared to other babies, and she would cry incessantly, needing to be carried at all times. The family doctor continuously dismissed these concerns, insisting that Adele was fine. For a whole year, my grandmother had to endure this casual dismissal, while knowing deep down that her daughter was not like the other children. However, in 1952, a time when male doctors rarely took working-class women without a college education seriously, what could she do?
It was only when my mother’s family went to the Catskills that summer that they received a different diagnosis. They had visited a local doctor, not because Adele was sick, but because my grandmother had some health issues. However, it was Adele who captured the doctor’s attention. With one look, he asked if Adele was receiving the proper care she needed. Confused, my grandmother inquired further.
“That child is a microcephalic idiot.”
More than forty years later, my grandmother recounted this conversation word for word to my mother.
In March of 1953, my grandparents brought Adele, only twenty-one months old, to Willowbrook State School. It would be years before I truly understood the horror that lurked within the walls of that institution. My mother, unable to explain what had transpired, began telling people that she was an only child.
Fast forward to the fall of 2021, and my aunt now resides in an unremarkable part of upstate New York, surrounded by strip malls, Pizza Huts, and liquor stores. However, her group home offers a cozy sanctuary, adorned with comfortable furniture, flowers, and family photographs. The exterior is framed by a real white picket fence. It’s the kind of home you would wish for your aunt, who was abandoned to an institution due to a cruel twist of timing and misguided beliefs, as she gracefully ages. When my mother and I arrive to visit her, she is waiting eagerly by the door.
The car ride to her house from where my parents live in northern Westchester lasts for ninety minutes. However, during that time, my mother and I only engage in conversation for a mere twenty-nine minutes and fifteen seconds. Part of this silence can be attributed to the unfamiliar directions on her GPS, but it’s also evident that this visit to her sister, whom she hasn’t seen since 1998, and had only seen twice before that in 1993 following their father’s death, leaves her lost for words. Instead, she focuses on telling me about the necklaces she has been crafting and selling to support her favorite charity, Hadassah. It’s unclear whether her chattiness stems from anxiety or enthusiasm, but it leaves many questions unspoken.
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