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I attended a medical conference almost twenty years ago in search of treatment options for my son’s ulcerative colitis. During the conference, his doctor shared a story about a non-verbal teenage patient with autism. Despite assumptions that he couldn’t comprehend anything, the patient’s parents were bewildered and frustrated by his repetitive behaviors, such as screaming and self-harming. They expressed to the doctor that his teachers believed it was solely a behavioral issue. However, the boy surprised everyone by using his sister’s alphabet toy to type out a plea for help, stating that he was in pain.

I became emotional and couldn’t stop pondering about it. This is a touching tale that would impact anyone, but it was especially poignant for me due to my experiences as an immigrant.

When I was 11, my family and I relocated to the United States from South Korea. I didn’t know how to speak English at the time and my parents warned me that it would be frustrating not being able to communicate. However, the language barrier had a greater impact on me. In Seoul, I was a confident and outgoing girl, but in Baltimore, I felt stupid, timid, and ashamed. It was then that I realized how deeply ingrained the belief is that speaking fluently equates to intelligence.

As I became proficient in English, I faced a dilemma of understanding it but being unable to speak it. People assumed I couldn’t comprehend if I couldn’t speak. As a result, kids would mock my strong accent and “imperfect” English in my presence. This occurred over 40 years ago, yet the memory still evokes feelings of shame.

Consider this: my personal experience was insignificant compared to the lifelong struggle of the boy at the conference. I had confidence that I would eventually learn English, and in the meantime, I could still express myself in Korean. It was difficult for me to imagine the emotional pain the boy must have gone through, unable to communicate his thoughts and feelings, and fearing he would never find a way to express himself in any language for the rest of his life.

After the conference, I initially believed that this boy was unique. However, I later discovered therapists who took a different approach to treating severe, non-verbal autism in children. They posed questions such as: could speech difficulties be caused by motor challenges rather than cognitive deficits? Could it be apraxia instead of intellectual disability? And what if the focus was on improving motor skills and sensory regulation to teach them how to point to letters?

The findings were surprising. The children began to express themselves verbally, spelling out words. They went beyond just communicating basic desires and needs (such as wanting ice cream or having a headache), and instead wrote essays about history, poetry, and their experiences of feeling trapped in their bodies. These pieces were so well-written that I was initially skeptical about who had actually written them, wondering if their therapists had played a significant role. This doubt was only reinforced when I searched for information about spelling therapies and came across skeptics who claimed that they were all fraudulent; that the children were simply being controlled by their therapists or even having their hands moved for them.

I made a conscious effort to thoroughly research these treatments, going beyond just reading about them. I reached out to local families and therapists to meet with them. As I watched videos and attended sessions, my doubts disappeared. I even had direct communication with the children, sitting beside them as they slowly used their own arms to answer my questions and ask their own. They pointed to letters on boards held by their therapists and I was amazed by their abilities. I met children who had participated in a study at the University of Virginia, which was published in a peer-reviewed journal. The study tracked the eye movements of non-verbal autistic individuals who spell, and concluded that they were independently selecting each letter without cues from their therapists. I began teaching creative writing to multiple groups and was in awe as I witnessed them responding to my prompts. Their thoughts, which had been stored in their minds for so long, were now coming out in eloquent and polished sentences.

The more I became educated and met other spellers, the stronger my desire – and need – to write about this topic became. I turn to writing when I am struggling to comprehend difficult and painful situations, and the discrimination against non-speaking individuals was just as perplexing and distressing as anything else I had encountered. Why did it take society so long to question the false belief that speech fluency equates to intelligence, effectively trapping this entire population in a figurative prison? Why do skeptics continue to deny that the words of spellers are their own, despite clear evidence to the contrary? And above all, why did I not learn from my own experiences that being unable to speak does not mean one cannot think or understand?

Besides being inspired by the incredible community of spellers, I also wanted to incorporate individuals like them into my writing. I created a tale centered around a biracial Korean-American household with a 14-year-old boy named Eugene. He has both autism and Angelman syndrome, rendering him unable to speak. Eugene and his father embark on a morning stroll to a nearby park, but only Eugene returns and is unable to explain what happened to his family or the authorities. As the family struggles to cope with this crisis and attempt to communicate with Eugene in any way possible, they take us on the same journey I experienced – one of uncertainty, questioning, shock, guilt, and ultimately, hope and motivation.

Although my intentions were well-meaning, I had concerns about accurately portraying a non-speaking individual, as it is not my personal experience. I discussed this worry with my students in a creative writing class, and they informed me that while they had read memoirs from individuals who communicate through spelling (such as Naoki Higashida’s groundbreaking book The Reason I Jump, translated by David Mitchell and Keiko Yoshida), they had not come across any novels featuring such characters. They encouraged me to continue writing and expressed a desire to see more fully developed, multidimensional characters who are non-speaking/spellers in literature. They believed it was important for the world to recognize and respect the presence of individuals like them in society.

Over the course of several months, I shared drafts of my novel with individuals in the speller, autism, and Angelman communities. My hope was to bring attention to these communities and their members who have been underestimated for far too long. Not only through the story itself, but also in other ways. For the audiobook, Eugene’s words were read by “Autastic Tom” Pruyn, a speller who has the ability to read written words aloud. During three book events, spellers joined me on stage as conversation partners, and in many other events, spellers in the audience used letter boards to engage and ask questions, often impressing other audience members. Spellers have also participated in book clubs and written thoughtful book reviews, all of which have been incredibly supportive and for which I am grateful.

The day following my book launch in the United States, a television team joined my students and me in the afternoon. I asked them to share their thoughts on being recorded for a national broadcast. One of my students wrote on his iPad: “Our quiet voices will echo across the globe.”

Source: theguardian.com