You were utterly still. Your hands, usually flapping, lay calm atop the sheets. Your crescendo of shouts and babbles was muted, replaced by a slow measured sigh. I wondered if you felt the stark difference: the sounds and vibrations of a waking body you can’t control, suddenly peaceful and passive in sleep.
As I watched, two words came to mind. Dignity. Grace.
I wanted to lean down and touch you—brush a kiss on your forehead, pull the covers over your chest. But I was afraid you’d wake, so I tiptoed away.
I just want you to know: I stopped. I looked. I wanted to reach out.
Your sister Emily
My brother won’t read this letter. He won’t read any letter, or any sentence or word. A host of things make Aaron different: autism, dyspraxia, developmental delays. In nineteen years, Aaron and I have never had a real conversation.
In a way, Aaron’s lack of language doesn’t matter. The qualities that define him—his laughter, his joy, his capacity to draw community around him—don’t depend at all on his ability to read or speak.
In another way, it matters completely. I can’t help but notice how it feels to write this letter. The words “Dear Aaron” immediately conjure a dignity and respect that I rarely grant my real brother. The letter assumes I’m addressing an intelligent, thinking, feeling human being. There’s a kind of reciprocity and equality, an assumption of shared intellect, inherent in the act of writing. It’s humbling to realize the difference between this pseudo-brother—the Aaron who could read my letter—and the Aaron with whom I interact every day. It’s an unconscious prejudice: the assumption that a person’s worth depends on his ability to read or speak. Even as Aaron’s sister, I’m deeply guilty.
An excerpt from my college application essay to Yale:
I don’t view my brother’s disability as a limitation. Instead, I choose to see in Aaron an opportunity to embrace perspective and authenticity. Calculus or Literature classes look less imperative when your brother, who can’t count or read, laughs twice as much in a given day as anyone you know. Because of Aaron, I know there is beauty and difficulty in difference. I know it is connection, and not achievement or conformity, that truly holds community together. There’s a difference between knowing these things and choosing to live by them. Every day, Aaron invites me to choose kindness and acceptance.
Reading this essay four years later, I have one response: bullshit.
The essay is neat and tidy, sentimental and well meaning. But if I’m honest, my high school self would have told a very different story. Missing from that essay are the times I rolled my eyes at Aaron in blatant disgust. Missing are the times he tried, in Aaron-language, to tell me the name of a book or a song, and I pretended not to understand because I didn’t want to grace him with attention. Missing are the countless days I refused to babysit him, or kiss him goodnight, or acknowledge him in public, because I was so paralyzed by resentment and shame. Missing are the times I wished for a different brother.
In a book called The Normal One, Jeanne Safer writes about the pressures and tensions that befall the siblings of children like Aaron. We feel forced into stereotypes and clichés. “Like a Homeric epithet, ‘supportive’ always precedes their names,” Safer writes. I grew up with an unquestioned assumption that there are certain values you’re supposed to have in a family. Loyalty. Acceptance. Reciprocity. Commitment. Sacrifice. Unconditional love. But life with Aaron deeply challenges these values. What happens to reciprocity when Aaron takes up all the attention? Does unconditional love extend to a brother who hits me and breaks windows? How much do you sacrifice to keep a violent child in the home?
Then, there’s the reality of the siblings themselves. We’re not heroes. We’re children then teenagers, with limits on our capacity for maturity and altruism. An entry in my high school journal, dated a week before Aaron’s aggression forced us to send him to a group foster home:
I’m tired of being mature! I don’t care what happens to Aaron. I don’t want to work to keep our family together. I don’t want to be the arbitrator between my parents. Our family is falling apart. Yet here I am, worrying about Homecoming and my lifeguard job and if I’ll ever have a boyfriend. I just want to be sixteen.
Being a sibling is profoundly confusing. On the one hand, there’s the deeply internalized sense of duty and obligation. Safer writes, “Helping the mentally handicapped is always presented as a family project; to participate with less than whole-hearted enthusiasm is unthinkable.” In glaring contrast, there’s the complex reality of we feel. I’m not selfless. I don’t want to be supportive. I don’t always love my brother. I want so badly to be the sister I’m supposed to be, but I’m not.So there must be something fundamentally wrong with me.
In the face of this tension, it’s no wonder that a story like my college application essay would emerge. The essay reflects the narrative handed to me by my parents, by society, by my internalized standards of a “good” sister. The story was also pragmatic. Life with Aaron is hard. The choice to view this challenge as a positive invitation helps us survive each day.
There’s another reason I chose to write that essay. I leaned on a cliché because the alternate narrative—the true story—was deeply uncomfortable. As Safer writes, “Abnormal children provoke forbidden feelings that are too painful and shocking for most people to admit. Wanting to abandon one’s own flesh and blood, hoping they will die, wishing they had never been born, repulsion and even hatred, are utterly antithetical to what good people are supposed to feel.” To articulate my true feelings toward Aaron, I’d have to stare face-to-face at parts of myself that are off-limits, imperfect, and raw. My teenage self wasn’t ready to do this.
People like Aaron are often described as “Unheard Others,” whose cognitive or physical disabilities prevent self-expression in literature, news, art, politics, and more. But as Safer argues, for every Unheard Other, there’s a sibling behind the scenes. There’s a sister who, out of fear or survival or duty or self-preservation, doesn’t feel the space or power to tell her story.
Who’s the real Unheard Other here?
Questions from my high school journal:
Why do some families have many normal kids, while I got stuck with Aaron?
Aaron can’t control his behavior, so why do I hate him? Who can I blame?
Why can’t I just love my brother??
The summer Aaron went to foster care, I volunteered at a church-run camp for kids with disabilities. My job was to be a “buddy,” tagging along to help a wheelchair-bound camper navigate zip-lines, water skiing, crafts, and daily worship. On the first night of camp, the staff rounded all the volunteers into a stifling cabin to show a documentary on a mosquito-swarmed screen. I don’t remember the title, but the gist was this. A young adult with autism suddenly finds a digital tool that lets her write and speak. The sentences that come out are shocking. “People treated me like I was less than human,” she says. “I want the world to know: I heard everything you said. It hurt me. I’m not a lesser person because I cannot speak.”
After the film, the head of camp stood up and preached. “We must never look down on the least of our brothers!” he roared. “God is watching. More importantly, they are watching. Every time you look with disgust or hatred on someone with a disability, they feel and hear and hold it against you.”
The room reeled around me. My whole body shook, my chest heaved. I ran from the building, sprinted out the camp gate, and collapsed in the middle of a field to weep. I vomited, then sobbed some more. The preacher’s words felt aimed directly at me, plunged straight to my core like a hot knife. I could almost hear God looking down and saying, “Shame on you! How could you treat your brother like half a human being? All Aaron wanted was your love and respect. You refused to give it. He felt your betrayal every time.”
It took years to undo the damage from that night. The event encapsulated a much larger pattern: the way my feelings toward Aaron are intertwined with my feelings toward myself. Life with Aaron inevitably provokes emotions that are hard to face—confusion, resentment, hatred, and fear. Chained as I was to the “good sibling” narrative, I felt no space to process or articulate these emotions. So I turned them inward. The dark feelings magnified and pierced into me, forming a lonely, raw, isolating weight.
Over time, I’ve been able to face and shed some of this shame. In college, I spent a whole afternoon telling my priest about Aaron. “I was such a bad sister,” I confessed. “The few times I treated Aaron kindly, it wasn’t because I wanted to. I did it because that’s what I was supposed to do. Our relationship was a lie. I wanted to love Aaron, but if I’m honest, I really didn’t.”
My priest listened deeply. Then he looked me in the eyes and said, “Listen. You are not a bad person. Loving your brother has been hard—loving anyone is, but Aaron especially. The fact that you couldn’t always accept your brother says nothing about your capacity to love. You were being Emily. You were sixteen. You did your very best. Look on your past self with grace.”
To the Siblings,
There are things you need to hear, and things I need to say.
There’s nothing wrong with you.
Your needs and wants are important.
No matter what, you deserve to be heard.
There is no “right” way to feel about your sibling.
You always have choice. You always have a voice. Your story is yours to tell.
After a month in foster care, Aaron came home for a visit. He seemed to have grown about four inches—the Aaron who arrived was a stretched shadow of my brother. Our resemblance was even more striking: same dark hair, pale skin, and lanky height. The difference has always been our eyes. Mine are blue, Aaron’s are dark brown.
For years I’d known Aaron through those eyes. Without words, you learn to pay attention. I’d watched his eyes turn frantic, the frightened gaze of a trapped animal, as he struggled to control his body. I’d watched those eyes glaze over while he slapped me. I’d seen them brim with laughter, light-filled and dancing in wordless delight. This time, his eyes were different. Wounded and subdued, but also deep and mature and refined.
As I looked, something loosened inside me. First, I felt pity—for the confusion and betrayal Aaron must feel, banished from his family for behavior he can’t control and reasons he can’t understand. But beneath the pity was something else. Not sympathy, but empathy. Erasure of difference. I saw a stark reflection of the experiences we share: Silence. Loneliness. Confusion. Feeling like a stranger in our family. The limits of language to express what we really feel.
Aaron’s eyes held something else, too. Safer writes, “The sibling embodies that disavowed part of your history and character with which you must eventually come to terms or never truly know yourself.” I saw in Aaron the unfathomable, terrifying darkness and complexity inside of me. I stared straight at my capacity for selfishness, for hate, for smallness, for shame. Looking at Aaron, I was forced to admit: These parts of me exist. I can acknowledge their presence, without judgment or condemnation. They simply are. I’m human. I’m whole.
It was humbling, and freeing. It felt like coming home.
Last March, while home in Oregon over spring break, I visited Mount Angel Abbey, a monastery tucked on a windswept hill. The day I arrived was gray and biting. I was the only visitor to the low stone church. I knelt on the cedar pew of the chapel and closed my eyes. And just like that, I felt a presence. Aaron was sitting beside me.
Words flowed out of me, that prayer-language that’s halfway between thought and speech. The sentences came of their own accord.
“My brother, I see you. For the first time, I see the wholeness and essence of your true self. I see a soul who is perfect and complete. I’m sorry for all the times I wished you were anything other than exactly who you are. Because who you are has always been enough. But none of the past matters, because now I know and see…”
As I prayed, a poem came to mind: “Up,” by Margaret Atwood. She describes the question she’d ask on her deathbed. “Who is it, really, you have needed all these years to forgive?” In that moment, I realized: the words I prayed to Aaron are the words I need to say to myself. Apology, compassion, acceptance, forgiveness, grace.
I love Atwood’s words for their tone of permission. You’ve needed all these years to forgive. It couldn’t have happened earlier. There’s no rush or regret or blame. I can look with new eyes on my college essay. The story wasn’t false– not really. It was the story I wanted to tell. The story I needed to tell at the time. Sometimes, we write our way to truths we aren’t yet ready to live. Beneath my shame is a deep longing. The magnitude of my guilt toward Aaron matches the magnitude of my desire to love and connect.
I tried, kneeling on that cold chapel bench, to extend my words beyond Aaron toward myself. I couldn’t do it. I still can’t. I wasn’t ready to offer myself such radical forgiveness and grace. So instead, I offered them to Aaron.
I have an intuition that these acts are somehow inextricably linked. Extending love to Aaron is practice, or absolution, or some more complex expression of the bonds of identity between siblings. My brother is at once my teacher and my mirror. Where I feel only silence, he helps me find words.
Sources: Safer, Jeanne. The Normal One: life with a difficult or damaged sibling. New York: Bantam Dell, 2003. Print.
Emily is a grad student in Integrative Biology at Oregon State University. She writes about many topics: religion, science, disability, education, and poetry. She hopes to teach and write about marine science, helping bridge the gap between people and ecosystems and foster connection to place.