Category: Advocacy & Down syndrome

The Word I Don’t Use Anymore

Published as an Op-ed in the Toronto Star, Saturday, February 24th, 2024:

“One Commonly Used Word We Need to Release into the Abyss of History” https://www.thestar.com/opinion/contributors/one-commonly-used-word-we-need-to-release-into-the-abyss-of-history/article_995dc748-d042-11ee-8cb5-df145c3cbe26.html

Twenty years ago, the ‘R’ word (“retard”) was used prolifically on school playgrounds, on the radio in people’s homes, and even during work meetings. With dedicated public awareness campaigns, disability advocates have been able to change the narrative, public attitude and perceptions of the ‘R’ word over the last decade, to the point that I rarely hear it spoken anymore. The connection between people with intellectual disabilities and the ‘R’ word was made explicit—you couldn’t say the word without punching down at the person. Societally, I like to think that we do have a conscience, and when the connection was made, most people didn’t want to be punching down at people with intellectual disabilities.

Fast forward to 2024. In almost every book I read, I come across the word ‘idiot’. I once used that word in the same context I still hear it frequently: I’ve done something stupid, therefore, I am an idiot. Insult based on a low IQ. The original meaning hasn’t changed. But where does that word come from and why don’t I use it anymore?

We have to go back to the early 1900s at the turn of the twentieth century. With the opening of large-scale institutions, doctors and medical professionals routinely recommended that babies with Down syndrome were removed from their families and placed into institutional guardianship. The institutionalization of people with Down syndrome went on for over a hundred years—shockingly, into the 2000s.

My family and I are still experiencing the reverberating negative effects of this separation and institutionalization of people with Down syndrome from their families, and one such way is the damning language of institutionalization that persists. In case you don’t know what went on in those institutions, suffice it to say degradation, torture, violence, and full-scale dehumanization that included drugging, hosing down, and forced sterilization of residents.

I first read extensively about this history of violence in Dr. Catherine McKercher’s book Shut Away: When Down Syndrome was a Life Sentence, which chronicles the history of institutionalization in Canada.

At the time, medical professionals had a language, a particular vernacular, to refer to people with intellectual or cognitive disabilities. This is the language of the institution: “People with IQs between 90 and 70 were considered dull or borderline, and anyone whose IQ was below that was classified feeble-minded. There were three types of feeble-minded people: morons (IQs of 50-69), imbeciles (IQs of 20-49), and idiots (IQs below 20).” (Shut Away)

If I tell you, when I was a classroom teacher 15 years ago, that these terms were still hanging around as a classification system to describe IQ for students with disabilities, these exact same terms, would you believe me?

If I told you, that my own daughter with Down syndrome’s intelligence was assessed under the guise of using the results to get her the school support she needs, and we were presented a graph with a flat line,

“Okay,” I said, “where are her results?” And the results were the flat line. A line yawning just above zero, as in, my daughter, who makes me smile and cry and laugh hysterically has zero intelligence.

Would you believe that would make her an ‘idiot’, to use the outdated terminology that has only recently—very recently—been updated.

When a term becomes an insult it becomes a weapon of dehumanization. When someone is viewed as less than human, they get treated badly. We use “idiot” as an insult, and when we do, we unwittingly call forth the language of the past. The language of institutionalization. A language that dehumanized people with Down syndrome in the past and continues to dehumanize them in the present. A language that would harm my daughter. A language that harms me, as her mother.

Once I made the connection, I couldn’t unsee it.

We can’t undo the past, but we can be mindful of the words we choose moving forward.

Some words we reclaim. Others we need to release into the abyss as relics of a sad and awful history.

Magic Tokens

I‘m writing this in Toronto, sitting at a picnic table bench, on a patio behind a modern café. Two magic tokens are tucked somewhere in my bag. Last night, I stood on a stage in front of a room full of people and read from my essay “Navel-Gazing, a Revolution & a Love Story: The Importance of the Self and Stories of the Marginalized” recently published in the Humber Literary Review where I argue for the importance of personal narratives. I point out that the dismissal of those narratives by the literary community, with insults such as “navel-gazer!”, is just another way of silencing marginalized groups. In the piece, I weave in the narrative of witnessing a female friend fall in love with another woman, and I mistakenly insert myself into their narrative. This is perhaps my way of saying just because you don’t identify or see yourself in a story doesn’t mean the story isn’t of value. Quite the opposite. The morning of the reading, I was paddling the 5 km perimeter of my cottage lake, my writing friend a distant paddle board dot. We spent two glorious days together writing, and during that time my friend received some difficult news.

The cottage lake was still. The air held its breath. And paddling in my kayak, I could see the rows upon rows of trees layering the hills, and I could see a specific cluster of towering white pines reflected in the water in front of me. That reflection, I thought, it’s real. The reflection in my computer screen less so. Real in the sense of nature; nature that is true and good and right and calming. No artifice. No tricks. Yet, infinitely more magical. I could see the benefit our surroundings were having on my friend. I could see that being together, when receiving difficult news, is better than being apart.

I believe in the magic of the natural world, but I also believe in other forms of magic, too. I believe in magical thinking. I believe in the magic of each other.

A long-time friend of mine showed up to my reading, along with her three kids—her youngest being three. When I posted the event and invited the world to attend, it somehow didn’t occur to me that I’d be reading in a bar. Bars generally being unwelcoming places for small children of which my friend has three. When she asked me if she could bring them beforehand I didn’t hesitate, “Looking forward to seeing you!” I texted back, oblivious. The alternative being that she didn’t come. My own kids wouldn’t be there. The bartender is thankfully gracious and inviting, the literary crowd friendly, the kids well-behaved, my friend a trooper.

Right before my reading, her youngest, hair combed and pulled into several adorable buns, gives me a thumbs up and an eye wink. “Is this the show?” she asks me. “Yes,” I tell her with a smile as the land acknowledgement is read. “She’s going to be so disappointed,” I whisper laugh with my friend.

But as it turns out, my friend will text me the next day that they had a great time and “even the kiddos enjoyed themselves.” As it turns out, you can will an experience to bring you joy, even when it risks not being so, just by being together. As it turns out, there can be magic in a room, on the stage, and I’m talking about the magic of other people and their willingness to love you.

I read alongside a Giller Prize-nominated writer and spent a long time later talking to another writer whose short story collection was nominated for the Danuda Gleed Award. Both prestigious literary prizes in Canada. Maybe their sparkle will rub off on me? Does literary magic work that way? I hope so. Later, on my Uber ride home back to my friend’s where I will stay the night, I tell the driver all about the evening. I will then recall that I talk quite a bit, and that my writing friend and I had laughed about this at the cottage on our drive home. The driver will encourage me, “It’s okay, writers should talk a lot.” And that, in itself, will be a sort of magic. “Yes,” I agree, “writers need to have an opinion, something to say.” I recognize the difference between talking too much and having something to say.

And perhaps the thing I have to say is that when I’m done writing this post, I will be heading to the hospital with my daughter—again. This time, planned. This time, welcome. As much as a hospital trip can ever be. Dental surgery overdue. Dental surgery that we hope will bring her and us much needed relief. And there is a magic in the doctors who are magicians of life and there is a magic in relieving my daughter’s pain, which is real, as real as my own that transpires on her behalf. Because she is a part of me.

Before the reading, at my writer friend’s gorgeously renovated high park home, she will descend the staircase in a flurry and hold two tokens up in front of me. “These are for you,” she says. I am awestruck by the gift of these good luck talismans whose dulled shine have passed many hands. How thoughtful. I look to her, grateful. “For my reading?” I say in earnest, “for good luck?”

“No,” she says, “for the subway!”

My magic tokens, I will call them, clutching them both in my hand. Talismans of good luck. And when we arrive at the subway gates, on the way to my reading, the tokens are no longer accepted and the security guard magically opens the gates and lets me pass for free with a wave of his hand.

The night is a success; the reading goes off without a hitch. The children are mesmerized. The crowd a delight.

Simply by believing they would, the magic tokens hold their promise

Tractor Dust

I’m visiting a good friend, a fellow writer, on her farm. The visit serves many purposes, but the main one is to meet her newborn daughter, and to spend time writing in the tiny house on her property where I stay. The two of us walk together inside the fenced-in enclosure of her backyard; she pushes the stroller, and I hold a glass of red wine. The fertile fields stretch out far behind us, all the way back to the distant treeline. A lone tractor crawls through the dirt, up and down the rows, laying seed or plowing, or we’re not exactly sure what. The dust makes it hard to tell what piece of farm equipment is attached to the tractor. I would have no idea anyway. I point to the tractor moving steadily through the field, kicking up a fine red cloud as it goes, and I say to my friend, “There’s a metaphor there.”

I arrive at the farm riding the electric waves of energy that come with receiving good news. I am admitted into a competitive writing program, awarded one of six spots. One of the essays from my collection-in-progress is a finalist in a Canada-wide competition out of 489 submissions. Job prospects are opening up. Requests are coming in. “Congratulations to you and your forthcoming book,” a respected literary friend writes, “it won’t be long now…” I am the tractor kicking up all kinds of dust in the field, sowing the seeds for a fruitful writing career.

But, if you have an idea of how stories go, and what happens once you reach the peak, perhaps you can predict the direction my life goes next.

Maybe I am not the tractor. Maybe I am the dirt.

A simple text arrives as I’m laughing with my friend, perhaps even holding her baby snuggled in my arms. The fine dust aroma of sweet earth that covers everything fills my nostrils. “Just spoke to Sick Kids, need to talk to you.” My husband texts, and my stomach drops.

“I have to call Dan, it’s Sick Kids.” My friend gives me a knowing look, takes the baby.

“Go.”

I’m outside, shooing the pesky black flies and mosquitos, trying to reach my husband by phone who suddenly seems so far away. He answers, but can’t hear me properly, so I make my way to the front of the house where reception is better.

If I was the one to write the narrative for my daughter’s life, some things I would rewrite, others I would edit out completely. My narrative for her wouldn’t include Down syndrome (in short, it’s the low societal expectations, the lack of supports, the prevalent ableism in our society, the associated health concerns…) If I was writing her story, I would take away her dental troubles that have caused her pain and infection, and spared her the need to be sedated, and the impending dental surgery. I certainly wouldn’t give her Crohn’s disease, as no one ever wants to be told their child must have a high tolerance for pain, because their insides are raw, let alone go through that experience. E has endured horrible pain. But like every story, at some point, the narrative shifts, turns, and for her it has indeed. She is being seen by some of Canada’s best and brightest physicians, for her G.I. issues and her teeth. Her Crohn’s is being managed by a team of medical professionals, we have a dental surgery date, and she’s on her way to healing. I would like to end the story there.

But that text.

My life is the field, peaceful and calm, and then the tractor comes and shreds the soil to bits. What seems known and certain is turned, mixed up.

E was born with a congenital heart defect and a leaky valve. Two small holes between the chambers of her heart that shouldn’t be there. She’s been followed by cardiologists for her heart since birth. Fifty percent of kids with Down syndrome need heart surgery, and so we felt lucky we’d dodged that particular bullet. Covid contributed to delaying E’s heart appointments by several years, but we weren’t overly concerned. We got caught up last week with a routine cardiologist check-up, and when the doctor looked at her echocardiogram, the message was what we wanted to hear: “The images are the same as four years ago.”

The cardiologist felt confident we could safely do nothing regarding the holes in her heart at this time. “But I will present her case at rounds and see what the whole team thinks.”

I forgot about holes in hearts, rounds, cardiologists, and let the entire pulsing mess slip from my mind.

Dan doesn’t mince words. “The team was unanimous in deciding that they want to go ahead with heart surgery.”

“What?!” When?

“In five to six months. They want to do it coming from the side so they don’t have to cut through her chest wall.”

And now that tractor is tearing along my chest, shredding my insides, throwing dirt up in my face.

Wait—Why?

The time has come for the holes to be fixed. She is big enough. The holes did not fix themselves over time, as was originally hoped. Surgery was always on the table, the question was when. Why hadn’t I realized this? Why is this news coming as such a surprise?

I am stunned.

I walk laps in the backfield with my friend, clutching my glass of red, and listen to the low rumble of the tractor in the distance. Dust flies up and I shield my eyes, but there’s no avoiding the sandy-soil that stains my shoes, settles in my mouth and coats my notebooks in grit through the tiny house windows. I squint against the sky to watch as the tractor plods closer, and what I feel most keenly is my inability to control its movement, to make it stop. I am helpless in the face of such machinery.

I turn my back to the mustard horizon, the roar of the tractor’s engine in my ears, away from the dirt clouds blood-red. My heart pounds and pumps in my head as I think about E.

And for now, that is where the story ends.

Moving On

Come wintertime where we live, once the temperature drops and stays firmly in the minuses dads from the neighbourhood come together to build a skating rink in the park behind our house. Last winter, when Elyse was nine, we were skating as a family on that rink, and Elyse was ready to go home.

“Okay,” I said casually. She wasn’t wearing skates. Elyse could leave any time she wanted, walk home, punch in the code, and voila, find her iPad or something else to do until the rest of us joined her. One of us wouldn’t be too far behind.

One neighbour, a dad, skated up to me as Elyse walked off on her own.

“Wow! That’s incredible,” he said. “I didn’t know she could do that.” I realized he meant walk home on her own. My daughter’s independence was a revelatory moment, and he was looking at me in awe. He didn’t know it was possible for a kid with a disability to be left out of sight, even for a short period of time and with parents in proximity. I let my position on the matter be clear, that you must know your kid.

“We’ve been working up to this point for years,” I explained. All those trips to the bus stop and walking to school, guided, but occasionally kid-lead. Leaving them to their own devices while we sequester ourselves in our offices to catch up on work. Allowing Elyse’s older sister to be in charge while my husband and I left for short periods of time to walk the dog. Giving the girls incremental pieces of responsibility, commiserate with their maturity and responsiveness. That time to manage oneself adds up.

Could Elyse navigate herself back to her own home safely across the park on a good day? Heck, yah!

Families have different goals and realities. I have met many families, moms and dads, with or without kids with Down syndrome who have never (ever) left their kids with someone else, let alone solo. That is not me as a mother; that is not our family. My goal for my kids is independence. Though occasionally, I forget to let go.

On World Down Syndrome Day (March 21), of all days, Elyse and I take a meandering walk together. And when I say meandering, I mean, let’s stop at every snowbank (the snowbanks are unabating) and kick the melting snow for five minutes. Me, the dog, Elyse: our trio crawls forward. The dog pulling me ahead, while Elyse kicks the snowbanks behind. The dog sits. We wait for Elyse to catch up. I try to appreciate the gurgling sound of the sewer water coming through the grate, the way stream rivulets cascade down the concrete sidewalks, the robins doing their dance of hopping from branch to branch above me. I try to appreciate the melodies of spring. But slow is rarely my speed in the middle of the workday. Though today isn’t about me, I remind myself. Elyse is taking herself on her own walk, and I’ve simply been invited to tag along. The bright sun, welcome, makes both of us squint.

We cross through the park behind our house, and as we near home I suggest she might like to stay out longer. I’m going inside to eat lunch.

“Open the garage door,” Elyse commands. And so I do.

I sneak glances through our front door window and watch my girl work on clearing a patch of icy snow away from the neighbour’s driveway. And while I feel the need to check on her incessantly, I know that in this separation we are both growing. My daughter needs her own space; to feel she is capable of holding her own.

Calmly, I wait for the kettle to boil and make my green tea. I pick up my salad bowl, fork, and drink, and head out the front door. I find a nice warm patch on our concrete walkway and settle myself where I can see Elyse.

She’s unimpressed with my appearance.

“I’m done,” she says, giving me a look. She puts away the shovel and heads past me back inside.

“Okay!” I say brightly, in the overture of the overeager, calling after her over my shoulder, as I scramble to stand back up, “Thanks for the walk!”

Down syndrome

Snapshot of Grief

When your child is sick, nothing else matters. Literally, it’s as though the world stops.
I don’t mean sick with a cold, though that presents its own challenges. I mean sick and you don’t know what’s wrong. Sick and you think you’ve cured the problem, but then you haven’t. Sick and they drop further and further away from school and family life. Sick and you don’t know how to help them. Sick without a way to comfort or make them feel better. Sick and the appointments keep piling up. Sick and the medical procedures mount in severity and invasiveness. Sick and you’re not sure when they’ll get better—IF they’ll get better. Even for sick children, there are no promises.
Dealing with a sick child feels akin to dealing with grief.

THE FIVE STAGES OF GRIEF:
(from psychiatrist Elizabeth Kubler-Ross’s book On Death and Dying)

DENIAL:
October: Blood in her stool. Oh my god, it’s cancer. No, no, the walk-in doctor calms and soothes. Anal bleeds are common enough in children and can be caused by anal fissures, small tears in the rectum. Put some Anusol on it. Nothing more than a little dry skin.
December: The sharp acrid smell of urine on the carpet, mixed with the unmistakeable stench of shit. The sewer aroma hits my nose as I rise up the staircase before I see the pile on the floor. She ran to the toilet but didn’t make it—couldn’t make it—in time.

BARGAINING:
January: We will change her diet. A “special” diet is more work for our busy family, puts a strain on the enjoyment and spontaneity of life—no more going out on a whim until we have lived this diet change and know where and what is safe. Family dinners to grandparents are altered, one more load we exert on our support network. But the changes will be worth it, because then she will feel better. And, there, everything will be fixed. We will give up gluten, but in exchange, she will feel better. That was the deal. That was the fucking deal.

ANGER:
Why this kid? Why the kid with Down syndrome? I don’t want it to be someone else’s kid, or one of my other children, but why THIS kid? Hasn’t she been through enough?
Why our family?
Why me?

DEPRESSION:
February: I feel less anger and more sadness, a tingling in my chest, pinpricks behind my eyes. We’ve been here before, ten years ago. This procedure and that surgery and once she recovers, you can take her home. With the help of our village, we took her home. I don’t want to have to send her back. Watching your child be put under involves an alchemy of insanity and sightless hope. Time exists outside of ticking clocks on the wall. Nothing else matters but that they should wake back up.

A line from a prayer my grandma used to help me recite at bedtime when I was a little girl: And if I die, before I wake…

ACCEPTANCE: I’m not there yet.

On Carrying Grief

Let me tell you a story. Once, there was a writer who gave birth to a daughter with Down syndrome. Wait. That’s not how the story goes. Let’s begin again.
Once, there was a woman who wanted to write a book. She gave birth to a daughter with Down syndrome and that experience was the catalyst that led her to write with a purpose. Furthermore, the writer now understood the book she wanted to write. For the writer, there is no point in writing without passion at the centre. Her love for her daughter filled that hole.
One day, the writer was journaling on her bed when an eerie blue light filtered through the blinds. The writer transformed into a mother cast in a shadow of sadness and she cried for seven days and seven nights. Her tears flowed and formed a river, which we will call “de-nile.” The mother wrote about the curse of the blue light, but she couldn’t free herself from the sadness. Not completely. The story and grief stayed inside her. For years, she carried the curse of the blue light, unable to free herself of its burden. The writer in her wrote, but the mother in her kept her from telling the full truth.
Nine years passed. The writer produced a book and was in the thick mire of writing another. And it was during the writing of that second book that the story of the blue light came back to her. She’d been carrying it deep inside of her all these years. She had no idea the story would save her.
The writer’s second book was a collection of essays. One of the essays she was editing was lengthy, unruly and in need of…something. She took the essay with her to a retreat in France searching for answers. There, she met and received guidance from a scribing sage: “I don’t usually do this,” the scribing sage cautioned about being prescriptive “but what you have here is two essays.” Now the writer could see what was obvious to an outsider. And so, the words were cleaved and a new essay in its infancy was born.
Later, at home, pondering the new essay and what it could become, the writer recalled the story of the blue light. With time and experience, she understood more fully where the sadness had come from and why. She had carried the weight of the blue light on her back and she was ready to fling it aside, like a pack that had once served her, but was now empty of reserves. But it’s true that the grief may never subside in its entirety, and the writer and the mother are okay with that. They will greet grief, upon its return, as though welcoming a long lost friend.
To research the ancient story, the writer dug through old journals, fished open old documents to accurately recreate the tale. Ultimately, she searched her own heart. And the pieces fit. The essay was complete. The writer smiled at the mother she once was, the person who needed to guard her truth. In the end, the blue light served her well. And only by releasing the truth of that experience could the blue light also serve others.
The process only took nine years.

The Deliciousness of Bodies

Dan, my husband, is away. Forget about what this sometimes does to me: mentally, physically, emotionally. What I’d rather discuss is the impact on my daughter Elyse who has Down syndrome. I should preface this by saying Dan has no choice as to whether he travels for work or not. It comes with the territory.

In Dan’s absence, Elyse’s behaviour changes. The change is remarkable to the extent that her school has requested I notify them of any dad departures in advance, so that they may adjust her day accordingly. They incorporate more rest, smoother transitions. In short, they demand less of her. She is a creature of habit, and her daddy is an integral part of her day. She relies of him for obvious help, but also subtle cues, subtle cues I’m not necessarily even aware of, which Elyse makes clear to me in our interactions.

Elyse sees us as a family of balloons, a colourful bunch, and with her dad away, it’s as though she is cut adrift, left wandering up into the sky of beyond. I reach for her string, try to grasp it, bring her back down, but she’s too high, too far gone.

But I have my tricks, by necessity. What mother doesn’t?

She is floating high high up in the sky, away from me, and I remember how to get her back down. I lay flat on the ground in the living room, cheek planted on the plush carpet looking right in the direction of our new windows, clear and shiny. In my field of vision, I see the bright glare of sunshine through the glass, clouds passing by, the bare winter branches reaching high, and our tropical plant, Urma, with her lush leaves in the foreground.

I lay there, ribs compressed, prone, and attract the living creatures.

Elyse is the first to take the bait. When words fail with her, I’ve learned to communicate with my body. This laying flat is an offering, you see.

I hear the pounding of her footfall approaching. Elyse straddles my torso and peeks her little face down into my field of vision. Her hands work across my back like a kneading cat.

The dog arrives next. His big wet tongue trails across my face, and Elyse defends me, bats him away. My youngest lounges across the backs of my calves. The laundry will have to wait. I am the one being draped with bodies.

I stay there, motionless, pressed into the earth, without talking, and Elyse claims me. I surrender myself to her completely. She lowers her little body completely on top of mine, squeezes me tight, and flashes her shark teeth close to my face with another big cheeky grin. She lets out a laugh. She is delighted to have me in her grasp.

Got you.

Down syndrome family

Back to School Cool

What it’s like to be a parent to a child with Down syndrome on the first day of school after most of summer camp didn’t go particularly well and you were regularly summoned from your work—pulled, wrenched from your work— when the phone rings because there is some problem with your child, “problem child”, that needs dealing with.

Most commonly: “Can you come and pick her up?”:

It’s the first day of school, and I’m sitting at my eldest daughter’s desk, out of my element, because I’m keeping our new kitten Marvel company. She’s a marvel. The phone rings unexpectedly and I jump from my chair—I leap from my chair. Where is it? Where is it? Where’s my phone! How dare my phone escape my peripheral vision, my direct vision. My hand. The watch on my wrist is the thing vibrating telling me I have a call. I have a call! Where is the physical device, the talking piece. I need it. Now. NO CALLER ID is flashing at me. I know what that means! That means it’s got to be the school, it’s got to be the school. Elyse. She needs me. They need me. The school. Where’s the phone? Where is it? I need to answer this call. I have to. I need it now.

I run, go barreling, stompy-footed down the stairs, hand bracing against banister railing and then pause. Hold breath. Listen. Hear the vibration of phone shimming on wood table. Eyes dart across the room. The kitchen table. There it is! Must reach phone. Arms outstretched legs moving too slowly too slow this cumbersome body. GOT IT! Hold breath. Answer the damn phone.

“Hello?” Calm, courteous, polite. Calm. CALM.

“Hi Adelle, it’s the dentist’s office calling, are you able to switch your dentist appointment to this week instead of next week, we have an opening.” Breath slides out like a deflating balloon, but my heart swells.

Yes, if that’s all that this is, then no problem. No problem at all. I’ll take any appointment you’ve got. Just, keep my kid, and make sure she’s happy and learning, will you?

Give Me Change Worth Celebrating

An abridged version of this piece originally appeared in the Opinion section of The Toronto Star, October 27th, 2021.

The last week of October is Canadian Down Syndrome Week. To the average Canadian, that might not mean very much, and likely for most, the cause for celebration has not registered at all. But what about for the average family who has a child with Down syndrome? What does Canadian Down Syndrome week mean to families like mine?

Yesterday, our kids were supposed to wear red to school and last night there was an email from the teacher reminding them to wear purple today.

“Why are we supposed to wear purple?” My youngest daughter asked, confused. I take a brief moment in our busy morning to look up the teacher’s email and explain the significance to my girls. If nothing else, that brief moment is the reason we wear special colours, choose days and weeks to commemorate. By coming together, we are highlighting a need to recognize and raise issues that otherwise, in the hubris of the everyday, go largely unnoticed except by those who inhabit those experiences. By flagging days and weeks and months we are finding a way to hold space, to question and hopefully, better understand.

And I want space held for my daughter. I want others to know that Down syndrome is characterized by a tripling of the twenty-first chromosome in every cell of her body. That this genetic difference has always existed across race and place and throughout history and that people with Down syndrome have unique personalities. That my daughter needs support in many facets of her life. That her life holds value. That she is loved. That she is funny and smart and challenging. That she speaks two languages and if she spoke none, our love wouldn’t change. Of course I want you to know all of these things. But knowing, on its own, doesn’t really seem to change anything; to make the world a more welcoming place for every person in it. Knowing is only step one on the continuum of care.

I knew about people with Down syndrome before my daughter was born and that didn’t stop the ache in my heart when she arrived. And part of that ache was about my own ableism; holding onto learned beliefs, rampant in our society, that one type of body or cognition or way of being in the world is better and ‘right’ over other ways of being. And part of that ache was knowing what we would be up against.

And what is my daughter and our family up against? The list is long. Wait times for essential services, such as speech therapy, that trail into years, not days or months; services that are essential to her growth, development, and wellbeing. And when services are made available, they are scarce and so families are forced to pay out of pocket to supplement, and if they cannot, they go without. Daycare settings not equipped to support children with Down syndrome who often need one-on-one support. Any form of childcare, extracurricular activity or camp that would provide the same quality of life that every child deserves are simply not accessible or have limited spaces. If a child needs support, they either aren’t welcome or they can come as long as they can get by on their own, which often my daughter can’t, not really. Or she can, but her big sister ends up being her support person. My ten-year-old daughter does not deserve to be her little sister’s support person.

Most public schools across Ontario lack adequate support for children with Down syndrome. The supports are either not in place by the beginning of the year, and so students miss out on their schooling, or the resources available are limited and divided between other students who also need full-time support. The assumption is that kids with Down syndrome are provided with the services they need to be successful and the reality, in Ontario, is that they are not.

None of this is the fault of the therapists, or teachers or daycare workers. These issues are systemic.

Ableism is also a systemic issue. Why do we hold onto beliefs that some people’s lives are worth celebrating—truly celebrating—while others’ aren’t? The notion that ‘an abled body is better’ gets my daughter at every turn. The assumption is that because she has Down syndrome, she is incapable. I have to do the work of educating every new person who enters her life and it’s exhausting. Elyse first learned her letters at three years old. Thanks to a sesame street app on her Ipad, she took an interest in identifying her letters (make elmo sing!) before even her older sister did. In kindergarten, she learned her letters in French, and I gently, then more directly, encouraged the educators in her life to move beyond the alphabet. At age 7, when a speech therapist celebrated that my daughter had learned her letters that session, you may understand why I did not reciprocate her enthusiasm. She now reads simple sentences and at age nine, you can certainly understand why I would insist any letter work be removed from her education plan. It’s tiring for families to have to constantly educate others and insist that our children are capable and worthy. I am so over it.

Wearing coloured t-shirts is a good first step. Certainly, I applaud the determination of schools and educators in their advocacy and awareness efforts. Education and awareness is an incredibly important first step in celebrating the lives of Canadians with Down syndrome. I would encourage everyone to visit the Canadian Down Syndrome Society’s website; to read books written by disabled individuals such as Count Us In by Jason Kingsley and Mitchell Levitz who write about growing up with Down syndrome. I will forever champion books and t-shirts, but—it’s not enough. Not nearly enough to truly celebrate the lives of individuals with Down syndrome. It’s only the first step. Simply draping a t-shirt over these issues doesn’t fix the problems.

To truly celebrate, we need to provide the essential services these individuals and their families need to succeed. When children with Down syndrome aren’t being turned away from daycares because centres don’t have the supports; when kids aren’t being left out at school because of ableist attitudes or lack of funding; when adults with Down syndrome have opportunities for meaningful employment and independence because businesses have an obligation to do so; when families no longer have to carry the emotional and financial toll, that will be worth celebrating.

What Could Be: On Poetry

Something happened to me this summer. My writing is morphing into something new, taking a different shape, being swayed and pulled in new directions. Perhaps it is my emotions that are demanding the reshaping, orchestrating this coup? Whatever it is that’s happening, I’ve been writing poetry, and learning about poetry, and meeting poets, and reading poetry, too. Poetry is gathered language that evokes a strong sense of beauty and feeling. This is one definition of poetry. One that I’ve been thinking about a lot. I’ve been encountering and striving to put myself in the way of other definitions and interpretations. I’m keeping an ear out for them. Feel free to send your definitions, found or otherwise, my way.

“Poetry is not a luxury,” Audre Lorde wrote in an essay by the same name, “it is a vital necessity of our existence.” Maybe poetry is helping me to feel real, to embody the fullness of myself. And maybe poetry has been my way of surviving through a time of change, uncertainty, and upheaval.

Poetry is the song of everyday life humming. It’s my dog pawing against my husband’s closed office door for food; the soft warmth of his muzzle tucked into my hand, as I feed him. It’s a place and space to find the words to set down against experience. A re-creation of moments, a cyanotype image.

In Bahar Orang’s meditation on beauty, Where Things Touch, there is this:
“As Helene Cixous puts it: I, too, overflow; my desires have invented new desires, my body knows unheard-of songs. Time and again I, too, have felt so full of luminous torrents that I could burst—”

Maybe poetry is the expression of those luminous torrents? Of my fragile heart bursting shards of light onto the page? I say my heart, because it is my heart doing the work, the heavy lifting.

Here’s a poem that sort of fell out of me when I let my guard down. I was meaning to be doing something else. Does poetry form in the annals of our periphery?

I’m thinking of patches of dappled light I saw on the floor of Algonquin forest. How does the light even get there, in those hard-to-reach places, beneath the canopy of all those leaves? But it does. Light finds a way.

I don’t want to explain my need for this poem. So I won’t.

What Could Be
Dedicated to my daughter’s extraordinary former educational assistants: Mme. Claudia, Mme. Joanne and Mme. Catherine (“Keegan”). Also, Mme. Suzanne. Vous êtes le soleil qui brille dans le ciel. You embody everything that could be.

The best ones
Never have to tell you
How good they are

That they know
Your child
Because they’ve worked
With one hundred of them before

The best ones
Talk
To the child
And look at
Whomever
They’re speaking to
Address the
human whole
Without
Needing to
Point out
The parts
that are broken,
Perceived
broken.

The best ones
Check in
After you’re gone
To see your shine
Light up the room
Engage you
In conversation
Conjure
Your magic
Evoke colours of the rainbow
That exist beyond the visible
spectrum of light

The best ones
Call you by your name

Hold a place for you in their hearts
Find pockets of space
Where you fit in
Foster the friends
Your hand will hold

Remember
You like it best
When the music is playing
And they let it play
As you instrument yourself
A fine tune

They sway to your every scale
Past when
The final note
Rings
Because they believe in seeing beyond
What isn’t necessarily there
to the naked eye
But what
could be.