A Word About John

My brother was finally crawling, but no faster than he could sit up. Mama had trained him to crawl all the way to the bathroom with an occasional pause to rest his arms on our soot-colored carpet. His head looked heavier than a watermelon; whenever he tried to raise it the whole thing wobbled. His arms were incredibly strong considering he still depended on Mama to change his diapers, put on his clothes and cut his food into tiny bits. Whenever she tried to let him eat by himself, mangled pieces of chicken would fall from his tiny mouth and scatter around his metallic chair until someone, usually my mother, cleaned it up or the cat got hungry. After lunch he would struggle, the muscles on his face contorted as he used his arms to propel his body toward his bath down the hall. I tried talking to him, but he never responded with anything more than a muffled grunt or a confused glance. Maybe it was the age difference: I was nine and he was twenty.

His baths became a ritual, repeated two or three times daily, as my mother attempted to wash away her memories of the Vietnam War: her own brother’s prolonged beating by the Viet Cong, the first husband’s murder in the South China Sea, the mangled corpses bumping against each other in the Mekong River. But no matter how hard she scrubbed, my mother could never erase her most startling memories: the shortage of medicine that stripped her 6 year-old son of his mental faculties, the fever that cut off a large part of his nervous system, the brain swelling that left him unable to walk, to talk, or to understand what had happened.

Prior to getting sick, Hai Tan Ngyuen, the brother I know as John, was a healthy, active child always getting into trouble. The pictures that line our family’s fireplace depict a toddler unfettered by nightly bombings, blissfully ignorant of the war around him. He enjoyed playing with American soldiers, including my father, and eagerly showed off the pet chickens he constantly chased around the yard. Whenever he stood with my mother in the mile-long lines for rice rations, women cooed about how cute he was, about how he would be Saigon’s next big heartbreaker.

Medical records never convey these sentiments. After the war, my father brought my mother and brother to the United States where doctors scrutinized John’s condition. “Mr. John Adams is an Asian male who has been a quadriplegic since 1976. The quadriplegia developed after encephalitis. The patient was worked up by infectious disease doctors who could not determine a cause for the encephalopathy. The encephalopathy resulted in the quadriplegia and mental retardation. The patient will never progress further than six years of age and will need full-time care for the rest of his life. Most likely, there is no hope for improvement.”

And there wasn’t. John’s mental state never progressed beyond three years of age and my mother assumed the role of full-time caretaker. By engrossing herself in his needs, she often neglected those of my three older siblings and I. She made John Vietnamese food while I subsisted on peanut butter and jelly. She gave him baths at night while I put myself to sleep. He monopolized her time, he got all of the attention, he made me think Mama loved him more than she loved me.

My earliest memory of John is when I was about four years old. I was in my backyard playing with my neighbor’s dog. I saw my mother carrying John from behind, her arms wrapped around his waist, his legs dangling down toward the concrete driveway. My father followed with John’s wheelchair, begging her to calm down. But she kept yelling at John to walk, not to play dumb. Her face was red. Even then, I knew that John’s grunting could only mean he was frightened. My mother let go and John crashed face-first into the concrete. I don’t know if he cried, but I did.

With this as my backdrop, I regarded John as a perverted family secret. Throughout elementary school, I lied about the number of siblings I had. I didn’t want to talk about him—about how he was responsible, at least I thought, for my father never being home and for my mother’s constant crying. I didn’t want people to know that I regularly helped my mother clean up his “accidents.” By the fifth grade, I developed a fear that my school bus would arrive home at the same time John’s did. The other kids might start asking questions about the miniature school bus making a stop in my driveway.

My youthful resentment was balanced by my immense sympathy. Once, during another one of his routine baths, I heard him moaning. This typically meant that my mother was shampooing his hair and he wanted me to hold his hand. As I approached the bathroom his groans became more emphatic. I opened the door and my mother wasn’t there. The bathtub was steaming more than the coffee my father said “burnt like hell” when he drank it too fast. All I could see was John’s head, bobbing back and forth in the steam, as he moaned in deep, monosyllabic tones the few words he knew: “no,” “stop,” “hot.” I reached into the steam and turned off the faucet. The water had melted away layers of my brother’s shoulder, rendering it a red mass of naked muscle, bleeding from the veins I could see more clearly without flesh obstructing the view. After the paramedics rushed him to the hospital, I went to my room and worried that he might not come back.

My irrational thought that John’s burnt shoulder might kill him confirmed that I loved him—the fear of losing him terrified me. Although we couldn’t play games or carry on conversations, we could make each other laugh. All I had to do was roll a blue rubber ball towards his contorted feet. All he had to do was poke me with his misshapen fingers.

By middle school, I could finally admit that I had four older siblings—John among them. While I recognized that he was not an embarrassment, my classmates and close friends could never see him as more than a burden. They casually deemed anything they found silly, stupid, or worthless as “retarded.” “That movie was so retarded.” “You are such a retard.” Worse yet was when friends acted “retarded” through gesticulation. They would bend their wrists, slap them against their chests, lower one half of their bottom lip and make noises that mimicked the speech of the mentally handicapped. The imitations were all too real. People would laugh, but all that I could think about were the days when John was still my family secret. It made me sad to think my brother really was a “retard.”

In terms of this insensitive use of language, Harvard is no different than my middle school. Each day brings more “retarded” things: a TF who grades unfairly, a salad bar that isn’t filled, a frozen computer screen. When confronted, my friends sometimes defend themselves. “Oh, it was just an offhand statement. I was caught in the moment. It didn’t mean anything.” Still others defend their use of the word based on its definition. “Well, if I do something stupid it is retarded.”

But therein lies the problem. Exclusively associating “retarded” with stupidity and worthlessness paints the mentally handicapped as empty people free of emotion. By demeaning them, this language simultaneously trivializes the struggle of relatives who provide for their handicapped loved ones. If John’s life is so meaningless, why did my mother waste the last 24 years of her own?

Because my brother can and does feel. During my senior year of high school, my mother, trying to place John on the toilet, dropped him, breaking his leg and shattering her hope that she could take care of him forever. After years of lifting, changing, and feeding, John was placed in a nursing home last March. For the first month he tearfully screamed at the nurses, “I want go home.” He could only sleep if my mother was with him. He would point to the telephone and say my name.

It’s true that John isn’t offended by any of this. You could walk up to him, call him a “retard” and he would probably just laugh and poke you with his fingers. But I also know that he can’t defend himself, only adding insult to injury. He’ll never be able to thank my mom for her devotion or prove to her that her time was not spent in vain. He’ll never be able to show people he is so much more than just a victim of the Vietnam War. He’ll never be able to teach people what he’s taught me: that the bonds of family mean everything; that muffled grunts and confused glances can mean “I love you.”

William L. Adams ’04, a Crimson editor, is a social studies concentrator in Winthrop House.