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.

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.

How to get Your Kid With Down Syndrome in Trouble

Okay, I should tell you right now, there isn’t going to be anything serious about this post. When I say “get in trouble”, I don’t mean like, tell her to climb on a portable roof and then call the police, I mean it in the sense of discipline. Dear reader, I think you knew that. If you’re looking for useful tips on disciplining your child—please—turn away. If anything, what I have to say is pure entertainment. Humour. Funny, yes, because parenting Elyse is a constant reminder not to take myself so seriously.

I’ve shared this story before, but it bears repeating here.

I’m playing outside with the girls. Dan isn’t home and Elyse heads inside. She promptly locks the sliding glass door behind her effectively locking us all out. She then helps herself to treats. She flaunts the fact of the treats in my face, as I kindly mouth, “Elyse, please open the door.” She wiggles her hips side to side, sliding chocolates into her mouth, one right after the other. OPEN THE DOOR.

In the aftermath, a good reprimanding is in order.

I’m trying to be serious, to be taken seriously. Locking your mom out of the house is dangerous. “Elyse, that was very dangerous. You can’t do that again, okay? Don’t ever lock mommy out. What do you SAY to mom, Elyse?”

Elyse, eyes downcast, chin low, tries to embody the seriousness I’m calling for, but then, in her defiant way, she mutters under her breath: “Sorry…poopy.”

Sorry, poopy. Sorry, poopy? How do you not die laughing right there? How are you supposed to parent that?

Another time, this time with Dan. It’s dinnertime, and Elyse decides to knock her sister’s empty cup onto the floor. After some prolonged negotiating, Dan grows weary and attempts to be firm with her. Her outright refusal to pick up the cup and his refusal to give in is a comedy sketch in itself. Dan feels like this is a battle he can’t lose. He uses his strongest fatherly tone.

“You’re going to pick that up!”

“Fine,” Elyse says in a flat monotone voice. She initiates the slightest movement.

“Elyse. Let’s go, pick up the pace,” Dan requests. But already, he’s softening. And at this, Elyse swivels in her seat on the bench, inching her body at a devastatingly slow pace, exaggerating each small gesture like a mime under water, punctuated with a look of utter indifference. He tries hard to keep a straight face. And fails.

In the midst of moving, we’ve been making forays to ice cream parlours and friendly backyards while showings take place in our home. On one such outing, Elyse decides she’ll stay in the car eating her pizza while the rest of us pile out to grab a cone. The next thing I know, Elyse has abandoned the vehicle and is standing next to me across the parking lot. No big deal, I could see her the whole time, but the next day she does it again, crosses a road without looking. This time all kids are to wait in the vehicle parked across the street while Dan and I have a quick meeting with our real estate agent. Out of nowhere, Elyse is suddenly on the road disrupting the meeting. She comes flying at us, running across the street, arms flailing, full of vigour, yelling, “I’m BAAAAACK!!!” Dan and I look at each other, trying to keep our composure as our agent natters on.

“I guess,” I say to Dan later, “we didn’t explicitly tell her to stay in the car and not run across the road.” I guess we can’t really get her in trouble for doing it then, can we?

But maybe the whole point of this post is just to say that sometimes there’s a better way. Than anger. Than yelling at our children. Than outrage and frustration. Than parenting until we’re blue in the face. Than trying to make our kids act in a way that we consider to be just right. We have to keep them safe. Of course, we have to keep them safe. Conversations need to happen.

But maybe, sometimes, our kids know something we don’t.

Dear New Parent Whose Baby is Hospitalized

You are not alone. And if you’re reading this, you’ve come to a good place.

Two wonderful moms, Jess and Kayla, have created a space, Beyond the Beads, for families to share their hospital experiences and to come together and support one another. They asked me to share my family’s story by answering a few questions posted in a word document on their site. I used the questions as a guide, but the existence of the form itself prompted memories of my hospital experience.

Forms. In the hospital, there were plenty of them. After my twenty-week ultrasound, which showed a soft-marker, or indication, for Down syndrome, I sat in the genetics clinic at McMaster Children’s Hospital filling out the same form for the second time that day with my family’s medical history. With my husband Dan by my side, we waited for the results of my ultrasound and bloodwork. The high-risk obstetrician arrived, test results in hand: positive.

Then, in the NICU, after Elyse was born, I was handed a from with a checkbox and the word disabled. I wondered: aren’t all newborns disabled and dependent on their mothers?

When a fetus is diagnosed with a chromosomal difference doctors consult their own forms and checklists. In the case of Down syndrome, the two most common health concerns involve the heart and the gastro-intestinal system.

Elyse was born with duodenal atresia—an atresia meaning a blockage in the duodenum—a section of the small intestine. She would die without surgery, no food able to pass through. I’m thankful we knew about the need for immediate surgery beforehand because I’m a mom who likes to prepare. I read what I could, but ultimately, nothing can fully prepare you for your child’s hospital experience. It’s just something you have to get through.

Our eldest daughter Ariel was 18 months old when Elyse was born. The forms to fill out were minimal with her birth; she was a textbook baby, mine a textbook pregnancy. The contrast between my first and second pregnancy experiences was one of the most difficult aspects of our hospital stay. I had to push away surreal thoughts of this shouldn’t be happening and embrace the idea of this is happening and you will get through it.

Elyse underwent surgery to fix the atresia at one day old. Dan says waiting for the surgery to be done, and knowing our baby was okay was one of the hardest parts for him, as well as the days of her being in critical condition that followed.

We made the best of our hospital experience, and I encourage other parents in our situation to do the same thing. Take mini breaks. We were fortunate to have family and friends babysit Ariel so Dan and I could visit the hospital together in the evenings when he was off work. After singing to Elyse in the NICU and reading her stories, we’d head down to the café on the main floor and grab a hot chocolate. I cherished those brief reprieves. And somehow, miraculously, we’d find ourselves laughing between tears, enjoying each other’s company, and I’d think who else that has a newborn and a toddler at home gets to do this? We made the best of a difficult situation as a coping mechanism for survival. In many ways, I found myself completely cut off from the outside world. What mattered for those four and a half weeks was to check off the doctor’s boxes: get through surgery, intubation and heavy sedation, ditch the NG tube, build the strength for one breastfeed, then two, until Elyse could successfully breastfeed eight times in a day and we could bring our baby home.

Another difficult stage was right before the finish line. Dan recalls when Elyse was moved from the NICU to the “ICU lite” as he called it, also known as the PICU (Paediatric Intensive Care Unit).

“I was like, okay, well can’t she just go home then?” he said. From my end, one day I showed up in the morning for my daily vigilance over my baby and she was gone. The team moved her to the PICU overnight without telling me. I quelled panic, and in the end, the news was good, our baby was getting stronger, closer to home, but the scenario brings up an important point. Good communication. We were greatly comforted by the physicians’ plans. We felt like our baby’s life was in good hands because the team at Mac took the time to explain what was going on (notwithstanding the occasional blip or two). As the parent, make sure you’re included as part of the team. You establish this relationship by showing interest, asking questions, and being involved as much as possible with your child’s care.

Before we were in the hospital, I talked to another mom whose son had been through heart surgery.

“During that time,” she said, “you will be a mess.”

It’s going to be tough. Things are going to be hard.

“But now,” she said, “those days feel far behind us. I almost forget they ever happened, and one day—I know it’s hard to image now—but it will feel that way for you too.”

Elyse is eight years old now and, in our case, these words ring true. Life goes on. Acknowledge that what you are going through is hard. And know that it will pass.

Our hospital experience was part of our journey as parents, and we’re forever grateful to the professionals who saved our daughter’s life, and in a way, saved ours too.

Elyse has been back to the hospital for follow-up appointments, a few minor surgeries, but we continue to approach her life as we did those days in the hospital: with joy and one step at a time. And with love. When we sang to Elyse or read her stories in the NICU, the nurses in the room would lean in because they could feel our love and they wanted to be a part of it. I believe, above all, that love healed our daughter. Please, if your baby isn’t doing well, or they take a turn for the worst, know that isn’t your fault either and not because you don’t love them enough. If you’re even thinking like that then I know you do carry an abundance of love inside of you. Sadly, sometimes no amount of love can make a sick baby better and I see those parents; I’m sending you all the care and love in the world.

Our love for each other and our baby got us through our time in the hospital and there is no form for that, just a whole lot of feeling the way with your heart.

Don’t Judge Me

On Monday after the holidays, Dan looks after our three girls while I sit upstairs in my bedroom office writing a class assignment due in the next few days. He’s being incredibly flexible and generous with his work time, and I am grateful for that, beyond grateful. We had many intense discussions all through the summer, when the kids were home for six months straight, and then the announcement came that the kids would be home at least an extra week after the winter holidays, which felt, to me, like a punch in the stomach. How would the kids feel about staying home again? How would I get all my work done I had to do that week before my residency the second week of January? Most importantly, who would be in charge of the kids and the kids’ schooling that week?

Later that Monday afternoon, I received a call from the girls’ school. The totality of words exchanged is a blur and unimportant, all that matters is the final outcome: Elyse can come back to school for the week. I almost cried.

I’m going to speak for myself here, but maybe sometimes in the parent disability community, we are too afraid of acknowledging that we need help because we’re afraid that somehow makes our kids look bad. Like, all those times we advocated for how capable they are and how they can do so many things (and they CAN), but there are also so many things they need help with, and my god, parents, we can’t do it on our own. I really can’t.

When the school called me and said they would take our daughter, I wanted to weep with relief. I almost did. Why? It’s complicated. She needs the help. She needs one-on-one. We don’t have the time. We don’t want to teach her one-on-one; it causes conflict and inter-personal drama between members of our family. There are only two of us, my husband and I, and we have three kids and a needy puppy. We both have full-time work. Having to homeschool our kids puts a strain on my relationship with my husband and our marriage. I’ve written about it in a few essays you will one day get to read (in my next book!), but I will write about it here too because it needs to be known. Having the kids home for six months put a huge strain on our marriage. We were pushed to our personal limits. And part of that is our kids’ ages. We have a four-year-old, she was three at the time. And part of that is, yes, I fully admit it, having a child with Down syndrome. I’m ready to fully admit it. In the case of my family, and of course I don’t speak for other families on this one, given my daughter’s personality, and by virtue of being our middle child, and because she has Down syndrome and her brain works and processes somewhat differently, there are additional challenges we face in parenting her. There are additional challenges we face in meeting her needs. At times, these challenges are not small. These challenges aren’t insurmountable, either, but it depends what you have on your plate. These challenges aren’t nothing.

But here’s the part where I get mad, because some asshole is going to say, “see—there! Having a kid with Down syndrome is harder, that’s why we aborted.” Or give some terrible excuse about why kids with Down syndrome should never be born in the first place. To which I would like to respond: Who named you god? Who crowned you king of the species, decider of who lives and who dies? Why do you think you are so special that you get to decide? And why in the hell would you think that just because I find there are challenges in having my daughter with Down syndrome that that would mean I don’t want her here? Why do we discount family? Why do we discount love? Why do we always discount love? Kindness? Goodness? Nature?

The problem is that the laziness inside of each of us wants to simplify the narrative. Down syndrome parenting = hard, therefore, something I would not want. But that story is much, much too simplified. Yes, at times parenting my daughter with Down syndrome is hard, but, hear me out, it isn’t that simple. What I would like to be able to do is to tell you that sometimes it’s hard without you judging me or my child. What I would like is for your support. Not pity or charity. Never pity. Don’t even try me with pity. We are a family endowed in privilege, so please do not give us material things. Just love, please. Emotional support. These are the things every family needs right now and always, but especially families who have kids with disabilities.

And since I’ve mentioned the word privilege, I want to point out that having typical children is a sort of privilege. Don’t use that privilege to look down on others. Use that privilege to help people with disabilities and their families rise up.

And what I would like to say is THANK YOU. Thank you to my daughter’s school for understanding that educating our three kids at home, in front of screens all day, was never going to work for our family. THANK YOU for caring about our daughter with Down syndrome’s education by offering us a better way. Thank you for the choice. Families deserve a choice. Thank you to her teachers and educational assistants for making this work. Thank you to her board for heeding the minister of education’s advice. Thank you to whoever made that recommendation to the minister, that kids with disabilities should have access to one-on-one face-to-face education during the shutdown. Thank you for not making me feel like my child is an after-thought.

Thank you for knowing our daughter well enough to see that, to her, the Zoom platform is really just a giant made-up stage where her actions have no consequences, and so butt dances all day long are perfectly acceptable. And funny faces up close to the screen. Picking one’s nose on camera. And that making loud noises when her sister is trying to learn is fun, and so is shutting the computer screen down when it’s her turn to learn even when there’s a real-live person on the other end trying to teach her, and she’s making mom and dad pull their hair out.

THANK YOU, a huge thank you, to her special education resource teacher who knows that, in the week leading up to my MFA residency, I have a shit-ton of work to do, and that my husband and I might explode if we have one more discussion about responsibilities (Okay, they didn’t know about that last part). Thank you for that feeling of joy bursting from my chest when we got off the phone that somebody cares about us, about our daughter, about me and my work.

Because I know, and if you don’t know this you should, but I know, that it is the mother who will get blamed. If school doesn’t go well, if the kids aren’t on time, don’t show up, it’s the mom’s fault. She is the one who is supposed to be doing everything. And guess what? I’m done. I’m fucking done being fully responsible. My husband has stepped up in the hugest way. HUGEST way. And I want to thank him because he knew and accepted when he married me that I am a person with my own ambitions. I am not a wife who has dinner on the table at 5:30 p.m. sharp, like my grandmother was expected to. That was never the agreement. I am the human who works feverishly, following her passions, as long as I can, then comes down in time to eat the dinner he’s prepared for me. At least right now, that’s the wife and person I am. I’m in an intensive program. I’m building a career. I’m also doing what I love. And when his work got tough, you better believe I was there for him. Let no one forget I stayed home to raise our girls for years. I breastfed our babies. I stayed up through the night. I cooked passable meals. I made school lunches. I am not saying he owes me, but I am saying that he can do it too. Men can care for children too. They can take care of the home. Even when they are working. Women do it all the time. Nobody is saying that’s ideal. My husband is doing it, downstairs, right now. He knew that was part of the deal when he married me, that we are equal domestic partners.

But all of this? Virtual learning. A global pandemic stretching into almost a year. A constant underlying threat to you and everyone you know and love. Nobody was prepared for this. And so we’re just doing the best we can, together. But he’s giving, there is no doubt he’s giving, more of himself than he ever wanted to, and for that I am grateful. And thank you to the school for keeping us a healthy family and for giving us this support. And if you didn’t know this was what we were going through, what many, many young families, in some version or form, are likely going through, then now you do. And if you didn’t know that for some families of kids with disabilities, the challenges can seem to stack up higher, now you know that too. Just don’t judge me or my daughter for it.

 

 

Own Voices

“Why are we not telling stories that celebrate and include differences?” asked Amanda Leduc, author of Disfigured, in a talk I listened to recently.

The talk was a wonderful online session offered through Writers Literary Festival (put on by The New Quarterly, based in Waterloo, ON). Amanda Leduc and Emily Urquhart discussed fairy tales, Disney and other storytelling, and how classic narratives impact our view of disability. Leduc explained how disability is perceived as ugly, unwanted, and the antithesis of a happy ending. I can’t get these ideas out of my head now, I don’t want to; I especially need to pick up Amanda’s latest book, Disfigured, where she fully explores this topic.

I’m thinking about how the stories we tell ourselves and the stories we listen to, have a huge impact on our lives. Stories are everything.

I’m wondering about the story young people are taking in, and what it means for a country to possibly re-elect a man who makes fun of people with disabilities, by slapping his limp wrist against his chest and rich suits on camera. I’m trying to distract myself from the possibility of that sad ending. (Update: now I am celebrating the story of a Black, South Asian woman as Vice President)

After reading Dorothy Ellen Palmer’s book, Falling For Myself, I now notice ableist slurs everywhere. Palmer calls out ableist language in popular usage, words such as: idiot, moron, imbecile, lame, among others, and expressions, such as blind-sided, deaf or hard-of-hearing (used as insults) and standing ovation. All of this language contributes to the negative persona of the disabled individual.

I’m listening to Sheila Heti’s book, How Should A Person Be? Nearing the end, after I’ve gotten laughs from the book’s quirky characters, I feel quiet inside, stumbling over Heti’s insistence on using the word “retard”. I understand this is a work of fiction, but authors of every genre have an onus and morality to write in a way that doesn’t demean groups of people. You can argue the right to vulgarity in art and the right to self-expression and free speech. Say whatever you want, and I support that idea in theory, but what I can’t support is language that is ableist and unnecessary and that at its core, borders on hate. What I can’t support is using the r-word three times in a row for the sake of pointing out a character is acting stupid.

A man called me stupid to my face once. Interestingly, it was over an argument with language. He called another man “fucking retarded”, and I happen to overhear and stepped between them. One man left, and I was left facing the name-caller. “Please don’t say that.” I spoke calmly, evenly, while looking up at him.

Our discussion was civile. He disagreed with me, citing the example of his truck having a retarder. I explained my case against using a derogatory term that demeaned people with developmental disabilities, whether he meant it that way or not.

We happened to be standing in front of my child’s school and personnel soon found out what the man had said. I wrote about the experience, briefly, not naming any names, and the next day, pushing my baby in a stroller with one hand, holding my daughter with Down syndrome’s hand in the other and my oldest just up ahead, the man stormed up to me. He had gotten in trouble from the school.

“I know what you did. Did you think I wouldn’t find out? That was stupid. You’re stupid,” he said, walking away in a huff. It isn’t enough for some white men to have all the power; they have to put a woman in her place.

Name calling is low down on the scale of integrity and intelligence and so I won’t sink to that level. But then, I have to ask the question, why do some artists?

In his Pulitzer Prize winning novel, The Overstory, by Richard Powers, while there is beautiful prose and heart-rendering descriptions of nature and a sense of urgency to preserve it, the list of ableist language used through-out this book is long, long and as far as I can tell, completely unnecessary. Let me explain what I mean by that.

In the story I recounted above, the language the man used says something about his character, but I am requoting his words within the context of educating. In other words, I used the ableist language above not solely to entertain readers, or for lack of insight, but for the purpose of educating, to show this type of language is wrong. In Power’s The Overstory, ableist language simply is. It isn’t there to portray a character, it’s simply part of the author’s vernacular.

Writers: here’s a great reason to drop the ableist’s slurs. Every time I read the expression blinded or the r-word, I fall right off the page and out of the book, and I see the white man who wrote it in all of his privilege, oblivious to how this language can hurt. I’m not saying that Richard Powers did this deliberately, I’m simply calling attention to a need for authors to be more deliberate in the language they choose, and to steer away from ableist terms when there are better options. Choose words wisely, in other words. Another way of looking at this is to stop appropriating language from the disability community.

If you want to learn more about this, I suggest following people in the disability community on social media. “Nothing about us without us,” is a slogan that began with the disability rights movement in The United States in the 1960s at the time of Judy Heumann (read her book, too: Being Heumann), and truly, any issue pertaining to the disability community is most impactful coming from individuals with disabilities themselves. Be an ally and listen to the ‘own voices’ of disabled people.

Here are some Twitter handles Amanda Leduc suggests following to tune into the conversation:

Dorothy Ellen Palmer — @depalm

Dominik Parisien — @domparisien

Elsa Sjunesson — @snarkbat

Imani Barbarin — @imani_barbarin

Rebecca Cokley — @RebeccaCokley

Yeah Brown — @keah_maria

Andrew Gurza — @itsandrewgurza

Marieke Nijkamp — @mariekeyn

Lillie Lainoff — @lillielainoff

Adam Pottle — @addypottle

Ross Showalter — @rosshowalter

 

I would add:

Andrew Pulrang – @AndrewPulrang

Gregory Mansfield – @GHMansfield

Alice Wong – @DisVisibility

Jane Eaton Hamilton – @eatonhamilton

 

Here are some stories Leduc also recommended in her talk:

  • Brave Enough series by Kati Gardner
  • One For All, by Lillie Lainoff, publication in 2022
  • Voice, by Adam Pottle
  • Falling For Myself, by Dorothy Ellen Palmer
  • Even If We Break, by Marieke Nijkamp
  • Six of Crows series by Leigh Bardugo
  • Unbroken: 13 Stories Starring Disabled Teens — anthology, edited by Marieke Nijkamp

When we choose to use ableist language, we perpetuate it. We engrain notions of ableism into our culture, because our stories have power. Our stories are important. And so we have a choice to make. The answer to me seems obvious.

I want to leave you with some of Amanda Leduc’s words, which I hope will become a part of the story you want to tell and live: “Every life, no matter how it is shaped, has inherent value.”

And, “Disabled stories and narratives are for everybody.”

 

Dear Troll Who Thinks My Daughter Doesn’t Deserve An Education

“A writer finds the story,” editor of Geist and one of my fellow MFA classmates, AnnMarie MacKinnon writes. This line resonates with me deeply. Every post, every essay I’m now writing; every thread of my last book is one giant hunt, chasing story down, banging down story’s door.

Sometimes the story comes to you.

What’s the story this week? Well, it’s not looking good. There’s news. This past week, Deondra Foxx, Roberta Buckley and Joey Moss, three beautiful souls from the Down syndrome community, have all passed away, with deep condolences to their families and loved ones.

Deondra Foxx is the beloved little sister of actor Jamie Foxx, who wrote in a social media post, “my heart is shattered into a million pieces.”

An announcement on DSE’s website about Roberta’s death was posted: “Roberta was born with Down syndrome into a world where she faced rejection, segregation and only the bleakest of expectations. She overcame many of these obstacles to live and love with dignity and independence.” Roberta’s mom, Dr. Sue Buckley, is a leading expert in education and development for young people with Down syndrome. Sue is well known for beginning research examining early reading instruction for kids with Down syndrome in the 1980s and she founded Down Syndrome Education International in 1986.

Joey Moss is a legend in the Canadian sports world. Moss was a locker room attendant for the Edmonton Football team and then worked with the Edmonton Oilers for decades after Wayne Gretzky brought him to the team’s attention during the 1984-85 season. You can sign the petition to help rename a downtown Edmonton hockey arena ‘The Joey Moss Community Arena’ in his honour.

And while this is going on, a woman in Toronto by the name of Kayla Sanchez started a petition on Change.org, a very different kind of petition, that came to the attention of the Ds community with the title, “Make Down Syndrome Kids Be Put In Separate Classrooms As Normal Ones.” I’ll spare you the entirety of the description, but it begins: “My son just started kindergarten, where I was heartbroken to learn that there was not one but two children in his class with Down syndrome. I mean first off shame on the parents for not getting the procedure, because instead they have chosen to scar and terrorize normal children.” The petition had only one signature, that of Kayla, and was removed the next day by Change.org thanks to the tireless advocacy of parents ever-vigilant, but was supposedly circulated to other parents in TDSB before its removal. This petition is hate speech and a blatant misrepresentative of an entire group of people.

My first impulse, when I saw this post circulating within my networks of parents, was to ignore it. Wasn’t this just some troll behind the screen, like one of those fake Facebook requests I got from solidly built men in the army? Maybe. Or was there a real, honest to goodness mother out there who genuinely, in today’s society, believed these false notions and horrendous stereotypes and wished to perpetuate the misinformation?

If you don’t know anyone with Down syndrome, if you don’t see anyone with Down syndrome, if you don’t hear about anyone with Down syndrome doing good things in your community, then probably you won’t care to learn more about people with Down syndrome, or maybe you’ll form misguided opinions of your own. Stereotypes. You won’t care to learn more about the good things people with Down syndrome are doing in their communities or what they can accomplish, people like Joey Moss who boosted morale on the team bench and worked hard to do his job. You won’t care about the family members who love their family member with Down syndrome, how Jamie Foxx loved and respected his sister deeply, how she danced at the Grammy’s with him; and you won’t understand how hard family members have worked over the years, and self-advocates, the people with Down syndrome themselves, to not only improve the quality of life of individuals with Down syndrome within the medical community, which has resulted in drastic life expectancy increases, and who have pushed tirelessly for social change because people with Down syndrome can and do learn, dream, work, and contribute meaningfully to their communities when they are properly supported and valued. If you don’t know any better, you won’t understand that people with Down syndrome love deeply and are loved deeply by their family and friends. You might, somehow, not even know their lives matter. Their lives matter immensely.

Groups of people who have been historically marginalized and dehumanized become easy targets for uneducated folks who don’t know any better in their heads or their hearts. To say they don’t know any better is to be generous. I am guilty of once being uneducated about Down syndrome, but being uneducated isn’t an excuse for stripping away another human’s rights. There is no excuse for stripping away another human’s rights. If you don’t know anything about people with Down syndrome and you don’t care to learn, then I suggest you keep your mouth shut.

Though many individuals with Down syndrome lead inspiring lives, I’m thinking of Robert Pio Hajjar , Sherri Brynard, Lauren Potter, Angela Covadonga, Madeleine Stuart, Megan McCormick, Eli Reimer, Yulissa Arescurenaga to name a few, these people have nothing to prove. They don’t do the things they do, become incredible human beings, to show their inherent worth, or so that you and I can feel better about ourselves. They are simply incredible humans.

Children with Down syndrome are loved equally by their family members and we would ask no less of society. And society does love our children, but we still have a ways to go. When someone doesn’t understand why there might be a child with Down syndrome in a typical school classroom, a child that has every right to learn as the next child, we still have a ways to go. When people still use the ‘r-word’ and language to demean those with intellectual disabilities, we still have a ways to go. When t-shirts are being sold on Amazon with the slogan, “Abolish Down Syndrome”, we still have a ways to go. When whole countries decide to target those with Down syndrome – Denmark, Iceland – with goals of being “Down syndrome-free” we still have a ways to go.

I can tell you all the ways as a parent that this person’s words and these kinds of thoughts disgust me; how ableist and discriminatory these practices are. But it’s better if you hear it from a person with Down syndrome themselves.

I will never forget the dignity and grace of South African self-advocate Sherri Brynard. Sherri faced many hardships in her life, including losing her father in a tragic waterfall accident. She went on to become the first qualified teacher in her country and around the world with Down syndrome. When I listened to her speak at the 2014 World Down Syndrome Congress in Chennai, India, she spoke clearly and with conviction, “people like me are aborted,” she said, “we deserve to live!” Every hair on my arm stood on end. Every fibre of my being was attuned to this woman’s powerful message, this incredible woman with Down syndrome standing before me on stage speaking up for her own rights. People with Down syndrome deserve to live, and more than that, they deserve the same support and opportunities in life that we all do, the same civil liberties and freedoms to exist, to health care, education and meaningful employment, and to finding joy and meaning in life.

And for those who are unwilling to accept that diversity is part of the human condition, that seeing and interacting with those who are different from us can invoke compassion and empathy, feelings that make us human and make our communities stronger and better; that people with Down syndrome are here and have always existed, that it’s up to us to take care of one another; that up to 25% of the adult world is disabled, that one day you or someone you love, will also be disabled. If you cannot accept all of these things, then I have nothing more to say to you. Other than I hope when you are old and disabled someone will have the mercy and compassion to look after you when you could not find it in yourself to look out and look after your fellow human beings.

Excluding groups of people is not the answer.

Take a look at the people standing next to you. Look after each other.

End of story.