A few words about Down syndrome

October 22, 2018August 7, 2022 whoopsiepiggleLeave a comment

With our daughter Lyra’s birth, we learned, among many things, the importance of language when discussing her diagnosis.

In my lifetime, using the word “retarded” to describe a person with Down syndrome has become entirely unacceptable. I understood this perhaps as early as the 1970s. However, I still used the word to describe nonhuman things that might frustrate me from computers to proposed legislation.

I had to work at it, but I have completely scrubbed the r-word out of my vocabulary. Why? Because it has become a put-down in all contexts with the original referent being people with Down syndrome. Though the word was never ideal, it was once commonly used, including by the very organizations that support people with DS.

The Arc is one of the oldest of these organizations. Until 1992 it was known as “ARC,” an acronym for “Association for Retarded Citizens.” Their website includes a thoughtful explanation of why the name was changed, and that today the only r-word to use when referring to people with intellectual disabilities is “Respect.”

Here in Ohio, each county had a “mental retardation and developmental disability” (MRDD) board until 2009 when they were all retitled “developmental disability” (DD) boards.

When Lyra was 2 years old, I reread an essay I had written soon after her birth. While waiting several days for Lyra’s chromosomes to be analyzed, I wanted her diagnosis to be mosaic Down syndrome, in which not all cells have a third 21st chromosome. Why? Because in those first days after an unexpected diagnosis, I hoped for Lyra to have “milder symptoms,” as though Down syndrome were an illness.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded.” Even today, books and articles concerning pregnancy and childbirth still sometimes use the language of illness, such as this example from a parenting website: “While everyone wishes for a healthy baby, you may have one with Down syndrome.” (Disability rights activists petitioned the publication and the language was eventually changed.)

Lyra, thankfully, is a robustly healthy child. While some children with Down syndrome have other health issues, to confuse a diagnosis of DS with poor health is as incorrect as confusing deafness or blindness as poor health.

Also important to all people living with any diagnosis is people-first language. Lyra is not a Down syndrome girl, she’s a 6-year-old girl, a kindergartner, a sister to her four brothers, and a lover of music, books, playgrounds and cats. The British cartoon “Peppa Pig” is Lyra’s favorite show, from which she’s learned to pronounce several words in the Queen’s English including “luh-vley” for “lovely.”

And Lyra has Down syndrome. She’s not a Down’s kid, she’s a kid. Just as any person with any diagnosis is a person, not a diagnosis.

Yet the first months of Lyra’s life, I stopped myself multiple times as the words “Down syndrome child” slipped past my lips. People-first language is so easy to understand. However, it took time for me to consistently apply a simple turn of a phrase that identified my daughter as a person, not as her diagnosis.

“They are all so sweet, people with Down syndrome.” I’ve heard this many times, particularly in the months after Lyra’s birth. While it is statistically true that higher percentages of people with Down syndrome claim being happy with their lives than the typical population, calling them “all so sweet” is a stereotype that denies the full range of human emotions in someone with DS.

And what can happen when someone does not behave in accordance with the stereotype ascribed by society? In January 2013, Ethan Saylor, 26, was killed when he did not behave like a sweet man with Down syndrome.

While his caretaker had stepped out to retrieve her car, Saylor, an ardent fan of law enforcement and the military, slipped back into the movie theater where he’d just seen “Zero Dark Thirty.” Because he’d not bought a second ticket, the theater manager alerted security officers, all off-duty sheriff’s deputies. Saylor’s caretaker returned just as the deputies arrived and warned them not to touch him because it would cause him to “freak out.”

Rather than listen to the person who knew him, the deputies dragged Saylor down to the side of the movie screen, just out of the sight of the audience. Because of his failure to buy a $12 ticket, Saylor was wrestled to the ground, his larynx was fractured and he died of asphyxiation. Rather than watching the movie, the audience listened to Saylor cry for his mommy in his last moments of life.

Until I was 46, I gave the disability rights movement little thought. Since Lyra’s birth, however, I think every day about the need for acceptance and inclusion of all people with disabilities in all facets of life. This includes medical care, education, employment, housing and relationships. It also includes freedom from harassment both in public and at home.

Acceptance is born from understanding and understanding is best gained by exposure. That is why October is National Down Syndrome Awareness Month — to introduce our communities to our loved ones with DS, who are often their own best advocates, and to dispel misinformation about what a DS diagnosis means.

Words matter. Choose yours with empathy. And when someone uses outmoded or inappropriate language, consider their intent. If someone is using the only language they’ve known to discuss Down syndrome, but they are doing so kindly, I welcome it as a teachable moment. For I, too, have had a long history of needing important matters, including the language of disability, pointed out to me.

This was first published in the Akron Beacon Journal on October 21, 2018.

Those who sexually assault women do not consider them fully human

October 7, 2018August 7, 2022 whoopsiepiggle2 Comments

Earlier this semester, students in my English composition classes at the University of Akron read Jonathan Swift’s “A Modest Proposal.”Written in 1729, Swift’s satirical solution to rampant poverty in Ireland was for English overlords to buy and eat 1-year-old Irish babies.

Swift compares the Irish to livestock, which is to say, less than human. My students and I discussed other groups of people who’ve been considered less than human, and to what end. Africans in order to justify slavery. Jews, Roma, Scinti, homosexuals and the intellectually disabled in order to justify genocide. Latino immigrants to justify tearing children away from their parents.

Then there are women. In a recent column, Nicholas Kristof wrote, “In surveys, when men are asked whether they have ever had sex with a woman or girl without her consent, a surprising number cheerfully say they have, without considering themselves rapists. They simply perceive themselves as fun-loving guys in a hunting game in which a ‘no’ can be vitiated with alcohol and muscular assertiveness; they leave smirking and the women leave traumatized.”

Politics aside, the twists and turns in the current Supreme Court confirmation saga are generating important conversations. My son Hugo called me from school the day after the hearings of Christine Blasey Ford and Brett Kavanaugh to discuss what happened. Friends with daughters are sitting them down to talk about sexual assault, underscoring that should they, God forbid, ever be assaulted, to please tell their parents immediately.

I was 25 when the Senate Judiciary Committee held hearings regarding Anita Hill’s allegations of workplace sexual harassment by her boss, Clarence Thomas. In a nationally televised, live broadcast, I saw a courageous young woman harassed yet again. I quickly realized the men I once viewed as elder statesmen were little different than schoolyard bullies.

The Kavanaugh proceedings were reminiscent of those from 1991. Like other women my age and older, I wonder what, if any, progress has been made in the ensuing 27 years.

The same year Dr. Blasey alleges Judge Kavanaugh sexually assaulted her, I was invited to a party at the summer house of a wealthy young man in northern Michigan. His father owned, among many businesses, a ship that served dinner each night on Lake Michigan. Many of the ship’s waiters were college mates of the son, and their home was, for a few months, a de facto frat house.

Shortly after I arrived, a group of men passed me, two of them holding a semi-conscious woman upright as they dragged her to another room. She wore a sweatshirt, but no pants. Using permanent marker, her rapists, for that’s what they were, had graffitied her legs with words like “slut” and “whore” and images of male genitalia. I knew the woman. We were both rising seniors in the same high school.

I wish I could write I stopped the men and found a way to take my classmate home. But in my ignorance, formed by societal norms and reinforced throughout my childhood, I wondered why she let those guys do that to her. I left as soon as I could and never returned.

This past summer at the University of Rochester, where Hugo is a senior, all seven fraternity houses were vandalized. Two female students spray-painted the words “I Was Raped Here” on the front of each house. The women had been raped at two of the houses and they knew, firsthand, women who were sexually assaulted in each of the others.

Earlier this year, I listened to an episode of the podcast “Hidden Brain.” Titled “Why Now,” the piece asks why the #MeToo movement exploded last year, bringing down several powerful men, many of whom had been accused of sexual assault for years, even decades.

The podcast describes how “preference falsification” can explain why women often choose not to report. It’s because they’ve witnessed what happens to women who have. At best, they are ignored, their allegations dismissed. At worst, as alleged of Harvey Weinstein, powerful men can destroy their victims’ careers, devastating lives they’ve already traumatized.

Women weigh the benefit versus the cost of coming forward with allegations of sexual assault. Both Anita Hill and Christine Blasey Ford recounted anguishing at length with their decisions. All too often, women accurately determine the costs outweigh the benefits, leaving perpetrators free to assault again.

But in the era of #MeToo, the preference falsification has begun to reverse. “The social proof has changed,” says the host of “Hidden Brain.” Society, for this moment, has switched the burden of proof from the victim to the accused. The current Supreme Court confirmation process seems a test of whether this reversal will continue.

As with all difficult issues, the two most powerful tools of parents are modeling and talking. Ideally, all children would grow up in families where both parents respect one another. For children who do not, the examples of other families — those of their friends, relatives, and even acquaintances — can provide a vital counterpoint.

But even when parents do respect one another, it is still important they talk to their children, to cultivate relationships where children are comfortable bringing home difficult questions and discussions.

Tell your underage daughters and sons to avoid parties with alcohol, and to be hyper-cautious when attending them after turning 21.

Tell your sons no means no, even when first told yes.

Tell your daughters it is never OK — no matter what she wears, how much she drinks or any other variable — for a man to touch her body without her explicit consent. Neither is it OK for anyone to discuss sexual matters, either in earnest or jest, without her explicit consent.

“Boys will be boys” and “It’s just locker-room talk” are code phrases that trivialize and dehumanize women in order to justify sexual assault. Feminism is the radical notion that women are fully human. It seems obvious, but the endless stories of sexual assault indicate we have a long way to go before the full humanity of women is accepted as a universal truth.

This was first published in the Akron Beacon Journal on Sunday, October 7, 2018.

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Capstone trip with young adult children marks new relationship

October 3, 2018 whoopsiepiggle1 Comment

A Viking inheritance as sure as my blue eyes, wanderlust courses through my veins. I’ve purchased less expensive houses and driven old cars to have more money for travel. Any dog I adopt and any child I birth quickly learns to enjoy road-tripping.

When he was 6 months old, I conked Hugo’s head on the stone ceiling of an underground cavern in Tennessee. Bending over to step through a narrow passageway, I forgot the head of my baby, who was strapped onto my back, stuck out further than my body. He was fine and, along with 3-year-old Claude, I spent several days hiking in the Great Smoky Mountains with Hugo on my back.

The notion of a capstone trip was born in 2007 at the Grand Canyon North Rim. Like me, 10-year-old Hugo wanted to return, stay in one of the park’s cabins and hike the Kaibab Trail to the canyon’s bottom.

“How about the summer after you graduate from high school, we come back, just you and me?” I asked Hugo.

Hugo is now a senior in college and we’ve yet to return to the Grand Canyon. Like his brother before him, after graduation, Hugo worked full time to help pay for college.

Instead, and perhaps better, I’ve traveled alone with each of my two eldest sons after they studied abroad. Four years ago, Claude went to Granada, Spain. When his program finished, we met up at the Madrid Airport and spent two weeks falling in love with the people, food and multiple cultures across the Iberian Peninsula.

This past summer, Hugo studied in Graz, Austria. A fine program with top-notch teachers, many of whom perform in Europe’s big opera houses, it is also private. That meant Hugo could not expect study abroad grants or loans from his college.

Instead, he gave recitals, received a scholarship from the Friends of Eastman Opera and simply worked, both during school years and summers.

Nearly two years after he auditioned and was accepted, Hugo made his final payment.

Meanwhile, I, too, squirreled away money, figuring I needed $2,000 plus the price of my airline ticket. When I returned to the States, my credit card dedicated to the trip had a balance of $2,100.

Like Claude four years earlier, Hugo met me at the airport. The next day, we traveled by bus from Vienna to Prague and two days later to Berlin. Three days before leaving Europe, we flew back to Vienna.

We always travel on the cheap in part because it’s what we can afford, but also what I prefer. If you stay at Hilton hotels in other countries, your experience will be different than if you stay with locals. In Spain, Claude and I averaged about $50 a night at modest local hotels.

In the time since my trip with Claude, a new kid has arrived on the accommodations block: Airbnb. Average cost: $30 per night. Heaven for Holly is staying in the homes of locals and learning about their lives. Our last host, a delightful 24-year-old named Heribert, studies art history. His large apartment in Vienna is about $1,300 a month and as an Austrian citizen not only is his tuition free, but he also receives a stipend for living expenses.

For my children and me, the unexpected is where adventure awaits. That’s why we travel on our own and not in organized tour groups. Mishaps are inevitable. And in the response to both delightful and stressful situations lies a traveler’s character.

Hugo always loved maps. Our time at the Grand Canyon was part of a cross-country road trip in our 5-speed Toyota Matrix. In 2007, GPS systems were around, but not ubiquitous. We used a road atlas and, as I was the only driver, Hugo was my navigator.

In Europe, Hugo took navigating to the next level. In each city, he figured out public transit and Google-mapped walking directions. He also found and booked our Airbnb reservations and travel tickets to each city.

On our last day in Vienna, we left with enough time to have lunch at the airport before boarding. Twenty minutes into the ride, we realized we’d taken the right train, but in the wrong direction. We got off in a sleepy alpine village and waited half an hour for a train heading toward the airport.

Hugo repeatedly apologized, telling me how stupid he felt. Going the wrong direction on a train, particularly in a foreign country, is not only an easy mistake to make, everyone has done it (if someone says otherwise, they’re lying).

“So long as we catch our flight, it’s all good,” I told him. “But if we miss our flight, we’ll just book a new one, possibly without having to pay more.”

We caught our flight but not lunch. Hunger makes the best sauce, and hours later at Heathrow Airport, we made quick work of two large plates of fish and chips.

Traveling far from home with each of my young adult children crystallizes two decades of work. Yes, work, along with love, humor and the growth of both child and parent. Together every minute, seeing amazing things for the first time while also figuring out unfamiliar languages and ways of living (a toilet paper dispenser in a bathroom stall in Prague left me feeling more ignorant than any human ever has), a person who started as a collection of cells in my uterus becomes mostly my equal.

Perhaps because I trained them to travel like me — have a plan, but keep it loose in order to take advantage of unexpected delights — some of the best days of my life have been trekking in foreign places with my adult sons. That they, too, treasure this time together is more dear to me than any gift.

First published in the Akron Beacon Journal on Sunday, September 23, 2018.