Search Results for: autism

Following the North Star

Getty / Photo illustration by Longreads

Shaheen Pasha | Longreads | April 2020 | 18 minutes (4,587 words)

I received the call at work from Tariq’s brother. I knew him briefly, had seen him as a kid, but aside from a few conversations here and there, we were virtual strangers. I couldn’t really even picture his face as his voice came across the line, hesitant, slightly unsure, a little defiant. It’s hard to imagine I had such a powerful connection to one man, and yet his brother, the person closest to him, was more of a name than a person.

“Tariq has been arrested,” his brother said to me, before his voice choked up into sobs, all his bravado vanished. I sat down in my chair with its slightly wobbly back, and dropped the handbag I had just hung on my shoulder, ready to catch my bus home from Jersey City.

“What did they arrest him for?” I said, my voice oddly calm even though it felt like my throat was closing. Drugs, maybe? He didn’t do hard drugs, that I knew. But maybe he had been caught up in the overly zealous drug war at the turn of the new millennium, when marijuana was considered the gateway to all evils.

Or maybe it was a fight at a club. That would make sense. Tariq thrived on a good fight, weaving in and out like a boxer, assessing his opponents’ strengths and weaknesses. It was something we argued about incessantly when we were together. One of many things.

But I knew before he even said it. Somehow, I knew. I had seen it in a dream, a sick twisted nightmare I’d had as a teenager in my dorm room all those years ago. Tariq had woken up and put his arm around me as I whimpered in my sleep. “Hey, you okay?” he said, still half asleep. I nodded and buried my head against his chest. “Just a bad dream,” I said. “I don’t really remember.” He was asleep, anyway, before the last words left my mouth.

I did remember. Good God, I’ve never forgotten it. A courtroom. A jury of mostly white men and women staring at me. A faceless man, some kind of a lawyer, standing in front of me. Me in a box, trying not to look at Tariq as I testified on his behalf. “Please don’t give him the death penalty,” I said to the stone-faced jurors in my dream. “I can’t imagine a world that he’s not in.”

It was a vision that came to pass a handful of years later, in 2005, down to the slightly sweaty wood paneling under my fingers as I gripped the edge of the witness box to keep them from shaking. But I didn’t know it at the time of the dream. Maybe I wouldn’t have told him then even if I had known. It was the first time and, as it turned out, the last time we had ever spent the whole night together. Good Pakistani Muslim girls didn’t spend the night with a boy, after all. I felt daring, rebellious and completely happy. I didn’t want to taint it with the imagery of a ruined life. I wanted our perfect night to remain just that.

So I just watched him sleep. He looked younger than his 19 years when he slept. All the hardness that would sometimes creep across his face was gone in his sleep. He even smiled a little, untroubled by nightmares.

I should have told him.

I should have told him.

“Double homicide.” His brother’s voice snapped me back to the present. His voice suddenly collapsed within itself, shaky breaths substituting words, creating a language of grief that could only be understood by the two of us.

In books, I’ve always read that the world stops when a person delivers horrible news. Time stands still. You can feel the air. Everything goes on hold. That’s not the reality, of course. My co-worker shouted a goodbye to me from across her cubicle as she packed up her computer. Phones rang, people laughed. Life went on.

Except it never really did for me again. Not in the same way. That call changed everything. It initiated me into a painful fraternity of those impacted by the trauma of mass incarceration. And 17 years later, the pain lives on and nothing has gone back to the way it was before. What would have happened if I hadn’t stopped to pick up the phone? I was already walking away from my desk, pulling out crackers from my coat pocket to curb the new nausea of my first pregnancy.

I wonder if life would have taken its natural course. Tariq and I had broken up two years earlier, when I was 22. It was sad and heart-wrenching at the time, but not unexpected given how young we were. Our relationship would have been a memory of first love to be cherished and stored away. A tale to tell my Pakistani-American grandkids in my old age when it was long past scandalous.

I was now married to a Pakistani-Canadian man who had swept me off my feet in a matter of months. It was a suitable relationship with a suitable young man who ticked off the boxes of propriety in my Pakistani immigrant community: Muslim, educated, handsome. And, to top it off, we were in love. It was a new relationship filled with promise.

I was pregnant with our first child. She was a little speck of a human being inside me. I’d been consumed with delight since I had seen those two blue lines just two weeks earlier.

Career, marriage, baby.

Done, done, done.

Normal. Mundane. The life I had been planning since I was a little girl.

This phone call was not part of the plan.

The first shrill ring. Let it go to voicemail, I said to myself walking away. I’ll tackle whatever it is when I come back to work tomorrow.

A second ring, slightly more demanding in tone, if that’s possible. I hesitated. What if it’s my husband or my mom? Nonsense, they’d call you on your cell phone. You’ll miss the bus.

Third ring. What if something is wrong? Sigh. I walked back to my desk and picked up the receiver.

As it turned out, something was terribly wrong.

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Sight and Insight

Getty / Photo illustration by Katie Kosma

Liane Kupferberg Carter | Longreads | February 2020 | 16 minutes (4,092 words)

I was born with strabismus, an imbalance in the muscles that position the eyes. Strabismus: from the Greek strabismós, meaning “to squint.” People sometimes call it cross-eyed, wall-eyed, or lazy-eyed.

I was still a toddler when my mother started taking me to doctors. They prescribed drops, eye exercises, and, eventually, glasses when I was 4. Mom chose blue and white striped cat eye frames for me. “These are adorable,” she said. If she said they were pretty, I assumed they must be. I wasn’t sure I wanted to wear them. But my mother wore glasses too, and I wanted to please her.

When the glasses didn’t help enough, the doctor instructed her to put a patch over one lens to force my weaker right eye to work better. That afternoon I went down the street to play with the neighborhood kids. There was a new girl with them. She asked, “Why are you wearing that patch?”

“I’m a pirate,” I said.

“That’s stupid,” she replied. “Girls can’t be pirates. You look ugly.”

I pushed her. She tumbled back onto the lawn and started to wail. A door flew open, and an enormous dog bounded at me, nipping and snapping. Frantic, I tried to get away, but a woman who must have been the girl’s mother grabbed me, her nails digging into my shoulder. She wrenched my arm behind my back and hissed in my ear, “Who’s your mother? You’re a very bad little girl.”

Sobbing and ashamed, I stumbled down the sidewalk, desperate for my mom. By the time I burst through the back door I was panting. Mom looked angry. The scary lady must have telephoned. “You know better than that,” Mom scolded. “I’m disappointed in your behavior.”

I was awash in incoherent misery. Why wasn’t she taking my side?

But I knew. It was because I was bad. An ugly, bad girl.
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Searching For Mackie

A portrait of Immaculate, "Mackie" Basil in Peter and Vivian Basil's home in Tache, British Columbia. All photos by Andrew Lichtenstein.

Annie Hylton | Longreads | February 2020 | 20 minutes (8,310 words)

This story was produced in collaboration with The Walrus.

As Peter Basil remembers it, the week leading up to Father’s Day, in June 2013, began like any other; he’s since replayed the events in his mind like a recurring bad dream. Peter recalls standing in the kitchen of his modest split-level home in Tache, a First Nations village that lies deep in the wilderness of northern interior British Columbia. His younger sister Mackie, then in her late 20s, followed him around as he made a pot of coffee.

“Promise me you’ll take care of my baby,” Mackie asked Peter, referring to her 5-year-old son.

“Yup,” he replied.

Mackie trailed Peter to the living room and sat next to him on the L-shaped couch, under high school graduation photos of herself and her sisters.

“Promise me you’ll take care of my baby,” Mackie repeated to Peter.

“Yeah, geez,” he responded. “Should I be worried? Are you coming back?”

“I’ll be back,” Mackie promised.

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Stumbling Into Joy

Jill Douglas/Redferns

Kate Hopper | True Story | August 2019 | 46 minutes (9,120 words)

 

“[Playing music together provides an] opportunity of stumbling into joy, of having an essentially unedited, fresh, and electric experience . . . [which] is key to the girls’ futures.” —June Millington, member of Fanny, cofounder of the Institute for the Musical Arts

The year I turned forty-three, I was in pain almost all the time. It wrapped like a mammoth hand around my right rib cage, squeezing, squeezing. The culprit: a sluggish gallbladder.

Pain is like a feral animal; it’s unpredictable. It’s not just the physical discomfort that’s so disruptive; it’s also the fear of the pain’s return. So even when I had a good day, I knew it was short-lived. Would I feel okay tomorrow? Was it something I did? Or something I ate? Pain made me feel old. It also made me acutely aware of my own mortality.

Finally, after eight months of trying to address the pain on my own, I had my gallbladder removed. It took another six months for my digestion to stabilize, and when I finally felt better, I was relieved, but also a little shell-shocked. What had just happened?

I shifted into taking-stock mode. I was almost forty-four years old, and ideally I still had half of my life ahead of me. How did I want to live it? And what were my regrets? Luckily, I didn’t have many. I was happily married, with two wonderfully spunky, smart, healthy, and kind daughters. My work as a writer, editor, and coach, despite not paying very well, gave me great pleasure. I reasoned that even the hard stuff I’d experienced in my life, which I would have gladly avoided if given the chance, had taught me something and had, as the saying goes, made me stronger.

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Walking Across California

Image by Kevin Bosc, Counterpoint Publishing

Nick Neely | Alta California | Counterpoint | November 2019 | 49 minutes (9,706 words)

 

Evening approached as I strolled west, back toward the ocean, past San Luis Rey’s trailer parks and down the river levee’s bike path, vaguely looking for a place to camp or simply reassurance that there would be a place to camp if I walked a few more miles. The river channel was a bottomland of scrub, deadwood, and patches of sand, with larger cottonwoods shivering, a revelation of groundwater. Hard to imagine a flood in this dry land that would warrant a levee of this size, but history must justify it. Several figures in a culvert raised my guard as I first approached the levee, but it was only three kids with their pit bull, sharing a joint.

In the distance, parachutists were swinging in descent. Camp Pendleton marines, I thought at first, but the base was north of the river, beyond a ridge. These were just civilians falling toward the Oceanside Municipal Airport for a thrill and the evening view. On Benet Road I crossed the river, seeing on my phone’s screen another dotted line, a trail, one that might be less traveled. Maybe I could camp there. Past the driveway to Prince of Peace Abbey, past a scrapyard with battered cars piled up, I came to a sign where the road dead-ended: No Trespassing — Area Patrolled. A man was changing the oil of his old vehicle just there. When I asked if anybody went down that way, his mumbles were unintelligible, but my impression was, No, it was a bad idea. A semitruck idled nearby with its driver hidden behind tinted glass. Feeling a little desperate, I turned around. Read more…

Airbrushing Out the Evidence of Her Son’s Differences

For Dame, Alysia Abbott writes a personal essay about the importance of presenting her autistic son on social media — fostering inclusiveness, normalizing his differences, connecting with other parents with similar children — but also confesses her tendency to only show him in the most flattering light.

I could select which photos I would share online. I would highlight those with his eyes open, his gaze steady, maybe the rare shot where he does look at me with a smile. At the right angle, and in the right light, Finn truly is beautiful. Friends and “friends” alike have commented on how much he resembles a young Paul McCartney. He has the full cheeks the cupid bow mouth the large brown eyes and soft mop of hair. Without fail, I will share those photos where that beauty is on display.

Here’s what you won’t see: images where he looks developmentally delayed, what we used to call “mentally retarded,” or just “retarded.”

I actually remember a turning point on trip to a local apple orchard when my son was maybe 3 years old. We say we go apple-picking in order to make fresh crumbles and apple sauce but we all know it’s really about the family photo op. Sipping cider on hayrides, small children sitting in a great big pumpkin patch–what could be more quintessentially wholesome and fall-like? On this particular visit, there was a beautiful late afternoon light and I was posing Finn inside a large apple crate, where he seemed happy to sit and play in the leaves. Later that night, scrolling through photos deciding which to share, I found one that captured an expression I’d never noticed on my son before, a slightly twisted open mouth grin that looked different, that looked more autistic. At the time I had a hard time seeing Finn’s diagnosis with any clarity. This photo helped me do this, but it wasn’t a photo I wanted to share.

With social media, I was able to create an idealized version of my son, writing posts that can accurately describe our days together, but accompanying these posts with photos that make him look like any other kid his age. In this online life, I could erase those aspects of his presentation, that peculiar autistic mien, that might make others uncomfortable.

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Yentl Syndrome: A Deadly Data Bias Against Women

Illustration by Homestead

Caroline Criado Perez | An excerpt adapted from Invisible Women: Data Bias in a World Designed for Men | Harry N. Abrams | 22 minutes (5,929 words)

In the 1983 film Yentl, Barbra Streisand plays a young Jewish woman in Poland who pretends to be a man in order to receive an education. The film’s premise has made its way into medical lore as “Yentl syndrome,” which describes the phenomenon whereby women are misdiagnosed and poorly treated unless their symptoms or diseases conform to that of men. Sometimes, Yentl syndrome can prove fatal.

If I were to ask you to picture someone in the throes of a heart attack, you most likely would think of a man in his late middle age, possibly overweight, clutching at his heart in agony. That’s certainly what a Google image search offers up. You’re unlikely to think of a woman: heart disease is a male thing. But this stereotype is misleading. A recent analysis of data from 22 million people from North America, Europe, Asia and Australasia found that women from lower socio-economic backgrounds are 25% more likely to suffer a heart attack than men in the same income bracket.

Since 1989, cardiovascular disease has been the leading cause of death in US women and, following a heart attack, women are more likely to die than men. This disparity in deaths has been the case since 1984, and young women appear to be particularly at risk: in 2016 the British Medical Journal reported that young women were almost twice as likely as men to die in hospital. This may be in part because doctors aren’t spotting at-risk women: in 2016, the American Heart Association also raised concerns about a number of risk-prediction models “commonly used” in patients with acute coronary syndrome, because they were developed in patient populations that were at least two-thirds male. The performance of these risk-prediction models in women “is not well established.”

Common preventative methods may also not work as well in women. Acetylsalicylic acid (aspirin) has been found to be effective in preventing a first heart attack in men, but a 2005 paper found that it had a “nonsignificant” effect in women aged between forty-five and sixty-five. Prior to this study, the authors noted, there had been “few similar data in women.” A more recent study from 2011 found that not only was aspirin ineffective for women, it was potentially harmful “in the majority of patients.” Similarly, a 2015 study found that taking a low dose of aspirin every other day “is ineffective or harmful in the majority of women in primary prevention” of cancer or heart disease. Read more…

We Still Don’t Know How to Navigate the Cultural Legacy of Eugenics

Illustration by Tom Peake

Audrey Farley | Longreads | June 2019 | 13 minutes (3,381 words)

 

On May 28, Justice Clarence Thomas issued an eyebrow-raising opinion. It concurred with the Supreme Court’s decision to uphold an Indiana law that requires abortion providers to follow a certain protocol to dispose of fetal remains and prohibits abortions on the sole basis of a fetus’s sex, race, or disability. It wasn’t the justice’s position that caught attention, but rather his method. In speaking to the law’s second provision on selective abortions, Thomas launched into a history of eugenics, the debunked science of racial improvement that gained popularity in the early decades of the 20th century.

Arguing that abortion is “an act rife with the potential for eugenic manipulation,” the justice offered a lengthy discussion of the origins of the birth-control movement in the United States. In this discussion, written for the benefit of other courts considering abortion laws, Thomas explains how Planned Parenthood grew in tandem with state-sterilization campaigns, providing the foundation for the legalized abortion movement. (As historians corrected, legal abortion preceded birth control, as it was not regulated until the 19th century.) The justice cites the disturbing rhetoric of Planned Parenthood’s founder, Margaret Sanger, who wrote in The Pivot of Civilization that birth control was a means of reducing the “ever increasing, unceasingly spawning class of human beings who never should have been born at all.” While conceding that Sanger did not support abortion, Thomas nonetheless argues that “Sanger’s arguments about the eugenic value of birth control in securing ‘the elimination of the unfit’ apply with even greater force to abortion, making it significantly more effective as a tool of eugenics.”

Thomas does not offer concrete evidence that American women actually abort fetuses solely because of sex, race, or disability. Nor does he explore the possible reasons for abortions related to these criteria, such as financial hardship or the lack of societal support for individuals with chronic conditions. His grievance with abortion boils down to this point: the practice is ill-borne. This claim is inaccurate, for reasons that historians swiftly noted; it also obscures the fact that eugenics did in fact initiate many traditions in this country, not all of which are perceived to be heinous today. Thomas’s incautious opinion, which echoes other voices in the abortion debate, unwittingly invites a more nuanced discussion of eugenics’ legacies.

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A Woman’s Work: The Inside Story

All artwork by Carolita Johnson.

Carolita Johnson | Longreads | April 2019 | 23 minutes (5,178 words)

The subject of my pre-doctoral studies was medieval nuns and their relationship to their menstrual cycles. Long story short: my theory was that this relationship was determined by the very real divide between the early Christians who favored either the Old Testament or the New Testament on the inherent “sinfulness” or absence thereof of the human body. The traditional, Old Testament attitude that menstruation made women “unclean” somehow prevailed. Fancy that. Call me crazy, but I had to believe that the way the Church, the Patriarchy, and all of society saw women’s bodily functions had an effect on women’s relationships with their bodies.

Stories of menstruating women ruining mirrors they looked into, or causing soufflés to fall, causing farm animals to miscarry, mayonnaise to “not take,” etc., and menstrual blood used as an ingredient in cures for leprosy or magic potions, were common. But even if they were all but forgotten by modern times, they merge easily into my being taught, in the 1980s, to call my period “The Curse.”

I’d noticed, in many hagiographies, that one of the first signs a woman might be a saint, besides experiencing ecstatic “visions,” was that she’d barely, if at all, need to eat or drink anymore, and her various bodily secretions would cease. I wondered if nuns might be using herbs, self-starvation, and/or physical exertion to put an end to their secretions, amongst which, their periods.

Compare this to how, in modern times, many women, including myself, would use The Pill without the classic 7-day pause in dosage to skip an inconveniently timed period. This pause was designed to give women on the Pill a “period” that was more symbolic than functional, almost more of a superstition, and totally unnecessary, medically speaking. Recent years have even seen the introduction of contraceptive pills actually designed to limit a woman to 0-4 periods a year — hormonally inducing amenorrhea, or absence of menstruation. There are times when women want to avoid having their periods, for example, during vacations, sports events (with the notable exception of Kiran Ganhi), honeymoons; in other words, times when we want to be at our best and free of physical impairments or, let’s be frank: free from the anxiety of being discovered menstruating. Some of us opt to be free from that anxiety year-round now. I think medieval nuns would have loved to have that option.

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The Organ Transplant Story You Don’t Hear

Getty / Photo illustration by Katie Kosma

Katya Cengel | Longreads | November 2018 | 14 minutes (3,847 words)

 

His arms are covered with the sticky gunk left after bandages come off. There is a blue bruise on the inside of his right forearm. A long plastic tube enters a hole near his belly button. When it’s not in use, James “Bo” Calvert tucks the tube that he uses for dialysis into a spandex “bra” that circles his chest.

Calvert has stage 4 kidney disease, which means his kidney function is only 15 to 30 percent. There are six stages of chronic kidney disease — stage 4 is the last stage before end-stage renal disease (ESRD), when the kidneys cannot filter waste and excess fluid from the blood. At this point, you need a transplant or dialysis to stay alive.

Calvert has had both.

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