How to Be a Sister: A Love Story with a Twist of Autism

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Looking for Myself in the Stories of Sib Lit

1. Recently I did something I’ve been avoiding for a long time: I read literature by people like me, about people like us. We go by “Sibs,” short for “siblings of people with disabilities.” I don’t love this term. I’ve had it marketed to me my whole life: I went to Sibs Camp, joined Facebook’s SibNet group, my parents connected me to other Sibs so we could be friends in our bizarre isolation. I even represented Sibs for Parents as Leaders in Wisconsin, sitting three years in a row on a panel, where we answered questions from anxious parents whose lives had been recently upturned by a child’s diagnosis. “It will be all right,” I told them, at age 14. “Look at us, we’re fine,” we said. My older brother, whose profound cerebral palsy defined my childhood—and who died several years ago of respiratory complications—marks me as a Sib. However, I’ve long mistrusted book recommendations that include, “It sounds like you.” My pride rankles: You don’t know me. Back off. Still, when I began thinking about writing about my relationship with my older brother—our Wild-West alliance; my adoration of, and then distance from, him as we grew older—I wanted to know what else was out there and what others among us had said. 2. I found just one relevant book in the barebones D.C. Public Library system, The Normal One by Jeanne Safer. It made me so irate I couldn’t read it with a clear head. It was everything I’d expected to resent in Sib Lit, absolutist, pessimistic and dramatic. I covered it in post-it notes with snide comments. Safer, who calls us the “intact” children and our siblings the “damaged” ones, writes: Having a damaged sibling marks you. No matter what you achieve, where you go, or who you love, that other’s life remains your secret alternative template, the chasm into which you could plunge if you misstep. Whether you know it or not, his is the doom you dare not duplicate, the fate you contemplate … Safer’s own family situation growing up was one I didn’t recognize. Her brother had undiagnosed behavioral issues, and as a response, her parents emotionally abused and neglected him. They housed him in a separate part of the building from the rest of the family, visibly favored Safer, and treated her brother as the family scapegoat. The sadness of her family’s circumstances undercut my anger a little bit. I don’t deny anyone self-inclusion in the Sib community, but of the dozens of families with kids with disabilities I knew growing up, none looked like Safer’s. It was difficult to stay livid with her for extrapolating her own life out onto ours; how could she know how far off she was? It hit me somewhere between pages 110 and 116 that Safer hits upon multitude reasons why Sibs behave as they do: guilt, fear, resentment, neglect, loneliness. But not once in the book did she diagnose a Sib’s behavior as stemming from love for a disabled brother or sister. The shock of this—that she had no knowledge of love between siblings—softened me towards her. I couldn’t begrudge her what she hadn’t known. After stripping Safer’s book of my post-it notes and returning it to the library, I bit the bullet and ordered used copies of every single other title on Sibs. For days, packages turned up on my doorstep, bulky envelopes and boxes and shrink-wrapped plastic. I put them on a shelf with other titles I found pertinent: Virginia Woolf’s On Being Ill, the children’s book The Brothers Lionheart, and Kurt Vonnegut’s novel Slapstick. So far, Vonnegut’s deformed twins Eliza and Wilbur still felt like the best literary representation of my relationship with my brother. 3. What is it about this relationship between a disabled body and a non-disabled body, bound as siblings, that is so impossible to define? From kindergarten through college, I was obsessed with trying to write about it, but I never hit the mark. My brother surfaced as the primary subject in short stories, composition essays, personal statements, poems, communications class speeches, and yet he didn’t. He was never there; neither was I; everything I wrote eclipsed us to become cliché and insipid. I had dozens of tacks to take, but I mostly stuck with the same one: the righteous warrior on my brother’s behalf. All of my efforts came out bland, weirdly ugly and hollow. Even in college, the words sounded childish. I became sick of myself. I decided to stop writing about him. After Safer, reading through the rest of Sib Lit became a quest. I wanted to find something true, some Sib who had figured out how to transcend our particular brand of Hallmark prose. I read practical guides from Sibs-turned-professional-empaths, essay collections and memoirs. Almost all of the Sibs’ siblings in this genre had an intellectual disability, mostly autism. There were few to no books written by Sibs like me, whose sibling had a physical but not intellectual disability. Unlike my brother, most of the disabled siblings could speak. Most of the authors in this genre are women, this for reasons obvious as soon as I learned why: Research shows that as adults, sisters are more likely than brothers to become caretakers for their siblings with disabilities. In the face of a thankless task, women step up. The clinically-focused literature, like Safer’s book, tended to diagnose Sibs’ ills, and then offer strategies to Sibs and practitioners for managing our specific brand of distress. Some of these I couldn’t take seriously; I’m still mulish on this subject, and chapter titles like “Your feelings and how to cope with them” elicit from me an arrogant laugh. Of this subset, I responded best to Being the Other One by Kate Strohm, who gently avoids generalizations about Sibs through phrases like “may be” and “some siblings.” In Strohm’s pages, I caught a few glimpses of myself and grudgingly tagged them. Yes, I worked hard to make my parents feel better. Yes, their marriage dissolved anyway. Yes, I can’t imagine ever having kids of my own. Yes, my closest friends all have chips on their shoulders to rival mine. But as in any diagnostic, don’t I miss as many symptoms as I hit? Doesn’t everyone, inevitably? Experts can yammer on about us for centuries but all they’ll ever come up with is the clinical equivalent of a horoscope. I mean this with all due respect. When I read of a supposed Sib characteristic that, however fleetingly, matches my own, it feels like a revelation: I’ve got it! I try to hold on, to follow the author’s thinking, but we’ve only intersected in that instant. The rest of the diagnostic was about someone else; about the author herself; about a composite of mes around the world. It reminds me of sitting in church as a teenager, trying to follow the sermon. I’d surface from a daydream to catch a phrase that stuck to me, and then strain to focus, to follow the thought through its successive mutations. Before long it was lost again. These books offer snippets, reflections but not the original image. Nadine Gordimer’s profile of a prodigal sister in Burger’s Daughter was sharper. Again the fiction seems more real. Strohm quotes numerous Sibs throughout her book. One, whom she calls Nance, says that talking about her brother consistently “brings tears to [her] eyes,” that her emotions are triggered the moment she tries to articulate their relationship. The subject can’t breach her voice box. I don’t need to tell you that my throat has the same switch. There is so much contained there, contained in my body and heart that will never make it past my skin or out of my mouth. I think sometimes that it can’t be possible. Books upon books are devoted to exploring grief and trying to describe its contours, and more still engage with the fascinating nature of siblinghood. The full spectrum of nonfiction books about Sibs, however, fit on one shelf in my office. There isn’t one about simply having a brother with cerebral palsy. And why would there be? Who the hell would want to deal with this material, this inexplicable bind? The pseudonymous Nance politely shrugs: “It just seems there are many feelings that I have never acknowledged, and unfortunately…speaking about [my brother] in an intimate sharing way almost always brings out the tears.” I hear her. In all my stabs at writing, I mastered spins and platitudes. But watch me try to say one true thing about my brother and me, and I will fucking crumble. [millions_email] 4. Since a writing fellowship in Banff in 2017, I’ve adhered to the idea that the details of what happened are the best path to meaningful explanations. To glean truth from the facts, I turned to memoirs Sibs had written about their childhoods and siblings. Even here, truth was hard to find. What I read felt like family stories, the kind told over and over again and that highlight family members’ quirks. Every family has these. They’re how we collaboratively define ourselves and what we use to describe our dynamic to others. (My family likes to rehash an incident involving chocolate chip cookies and the can-can.) These were the kinds of stories I told my whole life, trying to explain who we were: limitations explicated, plots tinged with slapstick humor, my sardonic tone as the punchline. [millions_ad] If possible, I saw even less of myself in the Sib Lit memoirs I read. I should note: These memoirs were about Sibs whose brothers and sisters had primarily intellectual disabilities. Karl Taro Greenfeld, in Boy Alone, wrote about his brother with autism; Eileen Garbin, in How to be a Sister, wrote about her sister with autism; Rachel Simon, in Riding the Bus with my Sister—the most successful of the batch—wrote about her sister with what was once called mental retardation. I closed these books wondering what, if any, overlap these families had with mine. Many of these authors wrote of containment: containing their siblings’ outbursts, sounds, activity, mood swings. I remember my house as the opposite. We lifted, carried, pushed; I bent my energies to making my brother’s still mouth break into a wide grin. Do we actually belong in the same bubble, sharing life hacks on SibNet and bunk beds at Sibs Camp? Does our commonality come less from our experiences with our siblings, and more from our experiences with the outside world? Greenfeld’s memoir, Boy Alone, is cuttingly sad. Spoiler alert—after describing his and his brother’s difficult childhood, Greenfeld spends 50 pages at the end of the book describing how, after years of stagnation, his brother slowly starts to make progress. He grasps rudimentary ASL, which helps bridge the gap to verbal language. He becomes more independent and gets a job as a copyeditor. He marries his childhood friend. Culminating this trajectory, he travels by himself to visit Hong Kong. Which is when the author fesses up: None of this happened. There was no progress, no happiness that his brother found in life. If anything, his situation deteriorated; he was institutionalized in various dirtholes and subject to systematic abuses including sexual assault. The twist is gutting. I wonder which part of the book, truth or fiction, was easier for Greenfeld to write. I can’t imagine my brother’s life with speech or mobility. But, reading Boy Alone, it feels as though the fake story is Greenfeld’s sanctuary, as though this imagined life is somehow more tangible than reality. What does it say about a facet of someone’s life, if a seasoned journalist like Greenfeld would rather skim the facts and embellish the fantasy? Is it akin to my cynicism, to my dislike of self-help texts while identifying with Vonnegut’s enfants terribles? In How to be a Sister, Garbin describes how, as an adult, she watched a documentary about autism, “my heart full of emotion. If it were a nice feeling, I’d say my heart swelled. But it was more like a bulging, like it might kill me. It was a terrible feeling. Part empathy, part schadenfreude.” Why are there so few books about Sibs on my shelf? It’s like instead of brain drain we all have heart drain. As if, unable to bear the intensity of our most fundamental sense of home, we live in emotional exile. Garbin writes, When I say ‘autism,’ I feel the weight of the letters resonate beneath my collarbone as if the word is tattooed on my skin. When I hear the word in the mouths of strangers, the mouths of teachers, the mouths of celebrities, my heart constricts. I feel lonely and familiar at the same time, homesick, like someone is talking about a place I used to live. Another possible reason for the dearth of Sib Lit, and for why so much of it feels trite and hollow, is because as Sibs we are usually only rewarded for bringing our archetypes to life. There is a market for stories about Sibs who are martyrs, Samaritans, self-destructive, game, empathetic, and resentful. This market has been around since I can remember, and the purveyors of these archetypes have been relatives, friends, teachers. Of course I learned how to be a cliché. Of course these books sound overly familiar to me. Our siblings don’t fare much better. Garbin writes, “Whenever I mention that I have an autistic sister, people always ask me what Margaret is like. What they really mean, though, is what her autism is like.” Similarly, in an essay called “Riding to the Fountain with My Sister,” Simon writes that she remembers how “people asked me almost nothing about” her sister, nor about our relationship. It seemed as if it was enough for them to know that I had a sister with a disability, the one then called mental retardation. [In adulthood] the lack of curiosity from others did not waver. It was those same shallow questions, over and over. Never anything about what TV shows Beth liked and I didn’t, or what names—nice and nasty—we called each other. These days, the words I’m trying to put down about my brother are frightening. No one’s ever asked me about most parts of our relationship, and meanwhile I’ve become so good at saying what people expect me to say. It’s difficult sometimes to stray from those tried-and-true lines. I fear that in explaining my brother’s disability, I’ve erased him. 5. The Sib Lit book that managed to transcend so many of these pitfalls was Simon’s Riding the Bus with my Sister. Part self-discovery memoir and part stunt journalism, the book centers mainly around Simon and her sister, Beth, as adults. Beth, who occupies her days riding public buses around the city, challenges Simon to join her for a year; this is the premise and structure of the book. It’s a bit like an urban Wild. What works for Simon in Riding the Bus with my Sister is that she approaches the story both as a participant-observer and as a diarist. While parts of the book do sound like those “classic family stories,” most of it feels like two real adult women trying to renegotiate their relationship. Beth the person is more believable than Beth the disability. I didn’t see myself in this book. I barely used any post-it notes while reading it. Simon and her sister were so obviously not me, so singularly themselves, that there was no point. It felt like an opening of space instead. Like I could breathe. I didn’t find a good reflection of my relationship with my brother, but I did find a way out from the funhouse mirror maze. Perhaps like Simon, the trick to curing Sib Lit is to dissolve it, and with that, its strictures. To force our unrehearsed truths into the mainstream. To be plainer, less analytic, less charming. In my case, it’s hard to tell whether this will be possible. Because he died when we were both in our 20s, my brother and I never really got the chance to figure out our adult relationship. We’re rooted in my memories, which I worry are prone to fogging and revision. And as Safer points out, that leaves me in a tough spot: Siblings are “the only surviving witnesses to your intimate history. Nobody else will remember your childhood.” I’m left to hope that, in spite of him being gone, I’ll be able to remember more than the stories I’ve rehearsed. Image credit: Unsplash/Larm Rmah.