Meat Suits

Choosing a career as a writer means I’m forever thinking to myself what is it you’re trying to say?

I’ve spent the last few weeks listening. Listening might be the hardest skill for me there is, so strong is my desire to contribute to the conversation. What is it you’re trying to say? I almost always have something to say, and I’m bursting at the seams to say it. Those who know me are probably snickering and nodding their heads in agreement. I have been interviewing others, which involves listening, truly listening in earnest to what the other person is saying without trying to interject or have a back-and-forth conversation. The experience has been a humbling one that I am immensely enjoying. It’s nice, for a change, to not have to worry about what I think, because in interviewing someone else, what I think doesn’t really matter. Sitting back and allowing others to do the talking is quite relaxing. All I have to do is listen for the story, and I can allow the rest to pass over me like a receding wave, like grains of sand leaking through my fingers, the pearl clutched firmly in my palm.

I have been working on my listening skills for years. All it takes is one person to talk over you to realized how uncomfortable that feeling is. But my desire to be a better listener roots deeper.

Listening to others makes us more compassionate and empathetic human beings.

Listening to nature makes me feel vibrant and alive.

Listening to the ones I love is like a salve for the soul.

Listening, because I spend much time with my thoughts elsewhere, pulls me back into reality, into the story of my everyday life.

The other day, in a writing group I’m a part of, my friend Seema wrote: “A man speaks the loudest when they are unsure.” And isn’t that the truth? I’m guilty of this speaking my way through uncertainty toward acceptance. Words as a way to appear intelligent, when inside I’m unsure of myself. I’m working on embracing uncertainty and listening to others. I don’t always need to have the answer.

In Buddhism, listening is an art form. Listening, without judgement, is a way to help another release pain.

“In Buddhist circles, Avalokiteshvara is referred to as a person who knows the art of listening. In fact, his name is translated as ‘the one who listens to the pain of the world’ — listening, contemplating the cries of the world. It is because of that practice that he became fully enlightened. And he continued to listen.” (Buddhism Now)

I’m no buddha or enlightened one, but for the past eight years, I’ve been listening to the pain of others through reading memoir after memoir. Counter-intuitively, listening to the pain of others has not broadened my own pain, but strengthened my resolve to keep others from reliving the same pain or at least, has given me insight into how to better understand the human condition and empathize with situations outside my own realm of experience.

Rape, incest, freak accidents, death, loss, racism, poverty, homelessness, illness, health, grief, gender fluidity and sexuality, transgender, disability, femaleness and motherhood: I’ve read about a diversity of experiences, which has helped me to better grasp my own existence and grapple with the meaningfulness of our lives. I listen to others, and can then think more clearly about that nagging question: what is it that you have to say? Listening is good for my heart and my mental health; listening enriches and informs my writing.

I’ve interviewed six people and I have two to go and it’s so interesting to consider the approach each person takes on the same story. While I’m asking for their version of a turn of events, I have a sneaking suspicion it is their version I would get no matter what. As human beings, many of us have a tendency to insert ourselves into the story, at least those with a personality like mine, the extroverts, who are bursting from the seams.

In Jordan Kisner’s essay, Thin Places, she quotes a writer who suspects our souls are the same souls, part of god’s tapestry, but we’re just walking around in different meat suits. That was the quote. “We’re all stuck in our own meat suits.” The writer goes on to clarify, “What I’m saying is that maybe we’re all the same, we just don’t know it because we’re separated into our own bodies.” When I read this, I hear a chorus of voices singing as one.

When we listen, and listen deeply, we tap into that collective hum. The art of listening and writing it down becomes a transcendental experience. Perhaps I’m taking this a bit far, but for me, from the perspective of this little meat suit, listening takes me to a greater place and writing is divine.

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.

Mom Guilt

When I look outside my window, the rain is falling sideways, leaving wet streaks, not unlike tears, against the glass pane. Pane or pain? I had a rough morning with my daughter. She got up at 6:30 a.m., brushed her hair for an hour, yelled down at me from upstairs, demanding that I put her hair in a ponytail, while I’m frantically putting together three lunches and breakfasts (plus my own, but mothers don’t really count, do we?) I run up quickly and gently pull her hair back, “there you go. Now, please get dressed.” Another hour goes by, most of that time she spends eating, which is great. I need her to eat. I take out the garbage, recycling, and green bin in the rain, continue to serve breakfasts, put away dishes. Clean new dirty dishes. Now I’m chopping up veggies and serving bunny mac and cheese into three thermoses and by golly, she’s still not dressed. I’m feeling less kind, less gentle, the frustration that has been building up over the past few days of solo parenting is about to boil over.

To aggravate the situation, I have a nagging cold that seems to have gotten worse, with each passing day, instead of better as I hoped. Bring on the Hydra sense and Kleenex box. Saying you have a cold during Covid times is like saying you have the bubonic plague. I’m fairly certain it’s a cold, but still. Nobody wants to be sick right now. I’m trying to avoid breathing on my children, desperate for them to stay healthy.

As the minutes tick by, 8:30, 8:37 – Ariel’s friend arrives on her bike – 8:42, oh now it’s 8:50 a.m. and we really truly have to go. Everyone has eaten breakfast, three lunches are packed in backpacks, agendas are signed, masks have been changed, water bottles washed and filled, hats, mitts, raincoats and rainboots sorted. Children have used the bathroom; some even brushed their teeth. And we could leave and be on time except that one child is buck naked.

That sounds funny, but I am not laughing. Not laughing at all. These moments aren’t about the specific incidences themselves, but about the dozen or so other moments of annoyance in the past few days that have boiled me down to this point. No water left in the pot.

Two hours after I first handed her – handed her – the outfit (why isn’t she getting it herself?) my daughter looks at me at 8:55 a.m. – we’re now to the point of being late – and she says, “No! I don’t want these pants.” She sits on the ground, wearing only her underwear.

ARGHHHHHHHH

I scream. I rant. I act like a terrible mom. I fail.

The truth is that I can’t handle being ignored. And I refuse to relinquish control. These are not flattering qualities, in case you were wondering. The truth is that time presses into my side, making me uncomfortable.

I listened to an interview with experienced broadcaster and author Howard Green and his advice when interviewing was clear: “There is a great, basic, human need to feel understood.” Listen, listen, listen, and listen well, he stated.

When I feel my child understands, that they are listening but that they choose not to hear me, I find that infuriating. The problem is, and it’s always obvious to me afterwards, it is I who is clearly not listening. I who has misunderstood. When I get angry and scream at a child to get ready, what I’m really asserting is my intense need to be in control. To be the A+ parent. I know this about myself. I am competitive, I want my kids to do things “right”, be their best selves, but in addition there’s an immense pressure on parents to be the best parents too: get kids to school on time, make healthy litterless lunches, take an interest in their day, check their agendas, do homework, and follow-up with the school as necessary. Prepare healthy meals, spend time with your kids, sign them up for extra-curriculars, make sure they have everything they need (hats, coats and mitts – winter is coming!), Halloween costumes. Pressure, pressure, pressure. Get it right, moms. You have a full-time job? Good – then maybe you’ll be able to afford family travel, the ultimate status symbol, and that overpriced house you live in or lifestyle you want to afford. Do you have interests? Good – those you can pursue when the kids are sleeping and you’re exhausted. Don’t forget to plan time for exercise, self-care, and a wedge of time for yourself! Gosh, not sure when you’re going to fit that in…guess you won’t. Balancing these ideals is impossible. Yet, I buy whole-heartedly into the rederick of having it all.

 

The problem is at times I schedule my day so tightly so that I can be the A+ parent, self, student, wife, colleague, etc. that there is little margin for error. For humanness. For the needs of needy children. Children always need something. At bare minimum, love. Let that be the rule and not the exception to the rule. I should have learned better by now.

The truth is also that I’m a bit of a perfectionist.

I scan my email first thing in the morning. I know, I know, nasty habit, but the other day, there was an assignment from my Master’s program sitting there. The email came in at 6:20 a.m. my time (my instructor makes full use of his days, too).

I open it and scan for my mark. I cannot tell you how much I enjoy receiving a grade because it’s shameful. I like it way more than I should. And this has led me to the conclusion that I’m a total pleaser.

Another truth. After the first assignment we got back, it wasn’t enough for me to know I got an ‘A’, I had to know what grades my peers received. How did I compare. One friend got the same as me, and another scored well, but slightly lower. I felt sick at myself for asking; I regretted the words the moment they came out of my mouth. My intention was not to make someone else feel bad, but to make myself feel good. I am a hedonist. Pour pleasure over my body, please, send good grades my way, fill my pot until it overflows and I’m good and wet. Now boil me back down with the work that it takes to get me to that point. I’ll take sick pleasure in the repetition of striving for success.

And that’s what it is, isn’t it – “success”? To reach success takes grit, determination. Pain. Refusing to quit. The willingness to boil oneself down again and again until there’s nothing left or the pot is full to overflowing.

When I do quit, and by quit, I mean cease to be the “good” mom, the “nice” mom, the mom who doesn’t yell at her kids, then as hard as I am on my kids, I am that much harder on myself. Don’t ever feel the need to shame a mom; no one can shame her better than she can.

I drop my kids off, then sit inside my house on the steps, feeling like a failure when the doorbell rings. Knowing I am sick, a friend decides to stop by with a treat. She sends me a text to let me know the treat is on my windowsill. She has left my favourite drink and a dessert. What act of grace is this? I feel completely undeserving. Isn’t that what mothers do best? But I allow myself the first sip, anyway, pour pleasure into my body. Nothing bad happens, the kids are at school, this time is my own. I sit in silence. I slow down. I acknowledge gratitude for my friend, I acknowledge I will try and do better next time with my daughter and I forgive myself. I sit down at the keyboard, latte by my side, and begin to type.

I acknowledge parenting isn’t easy, and I’m not perfect, and truly, I don’t want to be.

The Chimera

I’m back at the cottage. The chickadees are here – we call back and forth to one another – so is the rain. But I don’t mind the rain; I’m here to work. The brightly coloured ground is wallpapered with leaves. Inside, the whirl of a heater, a light sucking sound – or is it blowing? Last night, standing outside in the dark, complete silence. This is my definition of a retreat.

I do have a friend, a fury companion. I take him outside for his walk this morning and he refuses to budge from the doorframe. It’s raining, he communicates with his eyes. My pretty, prissy dog. Instead he suggests we play inside, nudging his rope toy into my leg, coyly letting his teeth graze my skin from time to time, just enough to goad me on. I am reminded of the fox from The Little Prince.

“You are pretty,” the prince tells the fox, “who are you?” The fox explains he is a fox and that if the little prince wishes to play with him, the little prince must first tame the fox. Louie is mine, I have tamed him. And now he is unique to me in all the world. But the fox’s words are almost a warning: once you tame me, I will be sad when you leave. The fields of wheat will remind me of your blond hair. We are responsible for that which we tame, and so it is between my vizsla and me. I am here to write, to work, to run a retreat, but I am also responsible for the things I have tamed. We can never completely leave the world behind, can we?

Later, we walk along the driveway and something inside Louie lets go, unclenches. He tears around, digging in the earth, then runs up a storm. Whatever it is that is wild inside of him has broken free. This is who he is, I think, this is instinct. I take him outside to be free, to be who he is. A wild animal. He runs at me full speed, his muscles uncoil as he jumps up at my chest, mouth open, gnawing at my arm.

“NO!” I am firm with him, grab his collar. It’s as though he’s forgotten himself, the dog we’ve tamed him to be. Oh, right. He sits politely, looks at me with those puppy eyes. “Okay,” I tell him, “go play.” Released, he’s off like a shot. Then a minute later attacks me again, playful but rough. Both my pet and a wild animal.

On another day, Louie and I are running together, and something miraculous happens. The moment is like a chimera, an illusion or fabrication of the mind, an unrealized dream, except it comes true.

Louie runs alongside me wearing a black fifteen-foot leash. If I see another dog or human coming, I can easily step on his long rope, or catch up to him and reign him in. I’m teaching him to come back to me when we see other people, but he isn’t perfect at it yet. Remember: taming, wild animal. He’s in training. The leash trails behind him, and bumps and shimmies across the ground like a snake. Louie and I are often close enough during our runs that I have to avoid stepping on his leash, which otherwise causes him to roll and tumble to the ground (sorry, boy). The leash’s movement makes it seem as though it is alive: it’s a trick of the mind and the eyes, and I constantly remind myself it is not so, the leash is an inanimate object being trailed along the ground. One minute I’m running along, the next minute the leash turns into a long black snake, slithering along in the shape of an ‘s’. The chimera becomes real.

I am running along and the end of the leash does turn into a real snake. I have to hop over the reptile to avoid stepping on its long body. The snake was likely sunning itself on the dirt path, when down comes my wild animal, clopping along, barreling full speed along the trail, disturbing the snake from its rest. The snake scurried off in my direction, appearing to materialize out of the end of the black leash the same colour as its body.

“Oh!” was all I could manage as I hopped over the snake the length of my arm.

This has to mean something, I tell myself, jogging along. Leashes don’t just change into snakes for no reason. Maybe it’s what is real isn’t as it seems? Maybe it’s about creating something out of nothing? Maybe it’s about life materializing? Maybe it’s about being at the right place at the right time to witness a miracle, or the wrong place at the wrong time, depending on how you look at it? Maybe the snake carries no meaning at all, the three of us just passersby in the grand scheme of the universe? But I think I know better than that. Maybe it’s about watching where I step, about learning to see what’s in front of me? Literally, what I am almost stepping on. Maybe the snake was a warning, a sign to turn and run, or a gift of the inanimate being made real? Of my worst fear, that of the leash or rope, actually being a real snake? Isn’t that one of those things many of us fear when we’re outdoors. That that stick over there is a snake that might curl around our arm and bite us? It’s funny how the snakes we encounter in Canada really have no interest in doing that, but my dog, the one I’ve tamed, he’s game.

The gift of meaning was in seeing the leash come to life, in beholding the real live snake, and then jumping over it. I did not scream; I did not feel in the least bit inclined to. I’m no longer afraid of snakes, because I’ve taken the time to get to know them a bit better. When we know something, we fear it less. And of course, as I jogged along further, I came to see the snake as representative of my little girl with Down syndrome. The end of the leash could never become real, just like how as a twenty-eight year old woman, I could never give birth to a baby with Down syndrome. That would be my worst fear. Then she was here, and I held her in my arms and saw that fear was only a fear of the unknown. That everything is knowable, and that it is fear that drives us apart. And that my little girl would become unique to me in all the world. She would tame me. It’s not that I wasn’t surprised, that I didn’t jump or that I would act perfectly, as her mother, all the time, but what once seemed scary, no longer held its power over me. I would see the world anew, and I would jog along just fine.

The Real Thing

September’s pace hits you in the belly, takes the breath right out of you. Perhaps the greatest indicator are the sounds coming in through my bedroom window from outside at six in the morning. The squealing breaks of large trucks, engines turning over, wheels pressed against pavement. These are not weekend sounds, rumpled sheets, the hot sizzle of oil in the frying pan or the smell of bacon and maple syrup. Another car drives by this morning. Even the sky is screaming with jet engines. Busy, busy, busy. All going somewhere.

Sometimes I want to turn it all off, make the noise go away. I check my phone and my day begins listening to a video of a friend crying. On a phone call with a friend last night, discussing writing, she reminds me that our brains don’t know the difference between real trauma and trauma we relive through our writing, in terms of the toll trauma takes on our bodies, our wellbeing. We feel trauma at a visceral level when we remember it and we actually reexperience it. Does my brain understand the difference between my friend recording a video of herself crying last night and that my friend is likely sleeping soundly when I watch the video today? Probably not. I feel sad when I watch the video because I see her pain, no longer real, but that once was so and were she to be reminded about it, she might be sad all over again too. But maybe not. Perhaps that was a particularly sensitive moment and she’s moved on. Without being there in person myself, I’ll never know the full context.

Online, even when we aren’t there, we are there. Through video and Zoom, we are everywhere now. I’m not sure if my brain knows the difference: that I am not actually going everywhere, it just feels that way. My body, my mind, have travelled into the city, across the country from one side to the other all in one day, and it’s tiring. We feel exhausted, fatigued. Burnt out.

I do have a remedy for this. My dog is my lifeline. I HAVE to walk him/run him/play with him. He gets me outside. Outside this time of year is the sound of crickets chirping, the hot sun beating on my bare arms, fading colour and fresh air with a whiff of decay. In town, it’s the cries of children in the school yard and the barks of dogs greeting passersby. Out of town, it’s trees and dappled light, stretching shadows, dusty footsteps along a well-trodden path.

My dog, my children, they are in the present moment. They are my real life. There is no such thing as past traumas, only the right-here-right-now of the moment. I am filling in a form for the school before I go back to the email I was in the middle of typing before I had to pick the kids up, before I phone that person back, before I join my next Zoom call, before, before…

“Mommy,” says Penelope, my youngest, “come play hockey with me in the backyard.”

“Okay.” I drop the pen and the form. This time they can wait, my four-year-old can’t. Or rather, she can, but real-life beckons.

While Zoom may take me to far-off places, my children keep me right where I am, right where I am meant to be.

Outside we go and the sun is blazing, the grass needs to be cut. Penelope hacks away at a tennis ball with her plastic stick. I teach her to always keep two hands on your stick, see, like this? the way my dad taught me. She hacks at the ground. Lower, quick, like this – see? She pauses to look at me, her eyes hold me and she smiles, delighted to have her mom all to herself. In the flesh. This connection between us cannot be replicated on any screen, or rather, it can, a scene in a movie perhaps, the mother dropping what she’s doing to make time for her youngest, a heartening scene that evokes emotion. The listener feels something, real emotion, love even, that approximates the real thing. But do not be fooled. My phone doesn’t love me. My computer screen does not love me. Exchanged in that glance was authentic real-life, an in-person exchange that cannot be replicated again. The exchanges of real-life are the fabric of the universe, not what happens on a screen. I’m trying to remember that. To tell my body to slow down, step away, get outside and into the folds of the universe. We pass the tennis ball back and forth between us; she hits it really far and we cheer. Our happy cries ring out and there is no replacing this real thing.

 

The Place We Are In

I’m back at the cottage for a few days. I watched the water current move all summer long almost exclusively to the right, or eastwardly, but now I detect an unmistakeable shift to the left. Fall is here. Something about the current, the way the water is moving, is reminding me of this global pandemic we are in. The water moves swiftly, as temperatures drop lower and lower, until the water temperature becomes untenable, deathly. For the time being, the water is hovering around 60 degrees, and most people wouldn’t go in. I did. With a wetsuit on. But not everybody has a wetsuit, protection. Many people can’t even swim. For many, the simple act of being asked to float would lead to drowning. Right now, people are being asked to float and people are drowning.

I listened to an audio book on the way up to the cottage, Alicia Elliott’s A Mind Spread Out on the Ground. What I’ve heard so far is fantastic, but there is one detail she got wrong. She likens depression to drowning, “but at least,” she says, “with drowning there are signs: arms flailing, noisy splashing, cries for help, etc.” I’m paraphrasing here, but you get the picture. While I appreciate the metaphor and the point is not lost on me, the notion of drowning being loud is incorrect. I was shocked to come across a pamphlet on drowning when I was researching water safety (as mothers are wont to do) when we bought the cottage. Drowning is known, by those who know – by lifeguards and the aqua-savvy – as a silent killer. Most people who drown never make a sound. They slip away, unnoticed. We are in a pandemic, there are people drowning, and they aren’t making a sound.

It’s fall and I’m in a three-season cottage and it’s cold so I’m trying to light a fire. Again, I have resources. I ball up paper and lay down kindling. Put a few bigger logs on top, one or two, not too many. I’ve been educated by those who know in the art of fire building. I asked my local neighbour who lives in the house he grew up in about wood stoves. After I’ve asked my many questions about indoor fire maintenance, he at one point grows quiet and still.

“Please,” he says, “let me know if you need help anytime.”

My question of, “so I leave the door open and then…?” left him feeling anxious.

“I don’t want you to burn down the cottage.”

Step one, pull the lever to open the flu (door at the top to let air out) all the way. Step two, get the fire going, use kindling and a fire starter as needed. Step three, once the fire’s going, close the door and close the flu three-quarters of the way by pushing in the lever, that will keep the fire from burning too hot, which could lead to a chimney fire. Step four, turn on the built-in fan in the back to disperse heat and temper the flame. Be careful what you burn. Always hard wood (maple, oak), not softwood (pine), which burns too hot and fast and can lead to said chimney fire.

Build your fire and watch the flames burn. Revel in the warmth, enjoy.

And I’m trying. I know all the steps, I’m doing the things, but the fire just won’t catch. Smoke pours out of the chimney, inexplicably flowing to the east, but nothing is catching. I’m flickering, flickering and now the flame’s out. I’m cold. Chilled to the bone. I add a layer of protection, but I’m not moving, not going anywhere and so my temperature drops like the lake outside.

And there’s something about being behind the glass and looking out at a lake I can’t touch that unnerves me – a fire I can’t hold. I want to go swimming in the lake everyday like I did before, but everything is different now. I’ve had to readjust my expectations, my way of being. I’m shifting direction from east to west. I’m going a different way now.

The fire, of course, is not for me to hold. But is it not just like me to want the things I can’t have? The very things that will burn me?

A career in writing is like this. Did I mention I’ve received a few rejections lately? I did not win the CBC Creative Nonfiction Contest, I did not place a particular story in the newspaper, I did not land that coveted agent. Burn, burn, burn. In truth, the agent hurt the most, although there I probably had the lowest odds. But here was the thing: this agent gets 10,000 pitches a year and mine was one of the 400 she asked to read further material. I was not one of the ten or so she chose to sign. And that hurt because the first hurdle felt SO monumental, to have made it so far, like getting our cases down so low, only to fail to complete the job. Those outside of the writing industry will say they’re sorry for my luck, and I thank you, really, I’m fine. Those inside of it will nod their heads in understanding and recognition, congratulate me on the rejections. I collect rejections because it means I am getting my work out there, and at some point, there come acceptances too. At some point, this will all be over. But arguably, we’ll be in a different place by then.

I will continue to swim in the lake as long as possible; hold my head and hands up, and warm them by the fire.

The lake by the shore is still now, motionless. As darkness descends, a flash of light and stone, a memory darts into my mind. One last reminder that I am not safe. Taking my dog out this morning, down a trail and beyond where I’d gone before, past the ‘no trespassing’ sign (I know, I know), into the beyond, in the dirt there lay an animal track. Bigger than my hand. My neighbour warned me of the potential for bears, but I just had to see for myself. And there it was, a sign as clear as day. I had been warned. These tracks were fresh. Except, this wasn’t likely to be a bear track, not based on the shape. The shape was more reminiscent of a wolf’s paw. A very large wolf. I followed the tracks, one, two, three, then stopped, came to my senses, and scrambled back through the brambles, back the way I came, thorns tearing at my pants. Turns out that was not the direction I wanted to be headed. I’m still figuring it out, which way to go.

The fire is lit now, burning steady. And I’m thankful for that because the temperature continues to drop with the sun. I’m warm and cozy inside, tucked away from wolves that hunt and the monsters, mostly men, I conjure in my mind. I am finding my way and this is the place I am in.

 

 

Not One Excuse

Editor’s Note: Our daughter’s school and educational team are extraordinary. We feel fortunate and grateful to have such dedicated educators in our corner and thank them for all their hard work to prepare for our children’s return to school.

It is my expressed wish that not one student with a disability will experience barriers to receiving an inclusive and full educational experience this year.

I’m addressing this piece to no one and to everyone who will listen. This is a projection of my fears as a parent to a child with a disability, magnified, but not unjustified. This piece is not to assign blame or elicit shame or to drag up the past or point a finger or a projection of any behaviour I foresee. The honest sentiments that follow are about how I want to move forward this school year, no excuses. I know I am not alone in having these feelings.

 

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education this year. Parents who have children with disabilities, we are worried about this. I do not want even one excuse. Not a global pandemic. Not a new teacher, a new year, not a new anything. Not my needing to be polite, or to give people time to figure it out on their own that my daughter is able. Not any litany of excuses: we’re getting to know her, she’s tired, we’re just getting back into the swing of things, or list of things they didn’t know about her, because here are the things they need to know about her: …that she should be doing group work, that she should be writing tests, that she should be keeping notes in an agenda with all of her peers; that she can read, that she can write (albeit large – large is okay!) that she can LEARN. That she is an intelligent girl. She may learn differently and at a different rate, but learning differently at our own pace is okay too. People who learn and think differently have drastically changed the world – for the better. Nobody ever questions how long it took them to get there. Different is not an excuse.

I do not want, one more time, to have to go over all of the things that my daughter can do, to have to elucidate her capabilities, one at a time, but my god I will. Because parents of kids with disabilities, if you don’t, if we make assumptions that others understand, if I assume that the teachers’ assumptions are the same assumptions as mine, that Elyse’s educational assistants who spend the day with her know what our expectations are, then, well guess what? Somebody is going to be misinterpreted, and then somebody is going to be left feeling disappointed, and more often than not, it is my daughter, my exceptional daughter, who is going to miss out.

I do not want to hear the excuse of “so-and-so didn’t know.” I am the one who makes that excuse, on behalf of well-meaning individuals, but I’m not going to do that anymore. Because they will know. Because I have told them. Here is what my girl can do. Because they can ask me.

I do not make demands and expect that the school is an island. I set expectations that the school and our household will help meet together. We will read with Elyse at home, no excuses. We can review concepts she’s struggling with at home, no excuses. I will sit down and plan how she can be properly included in her classroom, how to help her participate fully, and I’m happy to do this if it will help my daughter, but what I will not accept is any excuse for why it is not happening. No excuse will do as a substitute for full and proper inclusion and education. Insufficient funding – nope. Insufficient knowledge – nope. A lack of empathy and caring – definitely not.

I will not let my schooling get in the way of my daughter’s schooling. My husband will not let his work get in the way of our daughter’s education. My daughter’s education is not just my responsibility. Mothers are not solely responsible for their child’s education. I repeat: mothers are not solely responsible for their child’s education! No excuses, fathers. No excuses, men. I will not do all of the heavy lifting, but I will carry my fair share of the load.

I do not want one thing to get in the way of my daughter’s education. Not one bias. Not one prejudice. Not one more ableist assumption. Not her sister being in her class, or her glasses fogging up, or wearing a mask or needing to go to the bathroom. I do not want to hear it. Find a way. I will help, and so will my husband, but find a way. There is no excuse for denying a child their right to an accessible and meaningful education. Excuses are a waste of time.

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education.

Genuine situations, honest mistakes, empathy, compassion and kindness, always. But any excuses have got to go.

 

The Last Time

This is probably the truest thing I can share with you right now. It’s a poem I wrote this morning, reflecting on nature, but also, in a roundabout way, it’s about heading home, the changing seasons and the kids going back to school. Endings and new beginnings. I have such a strong desire to be close to nature and I don’t want to forget all the elements that have left me feeling so inspired this summer. Poems can convey, with brevity, emotions I may not capture in a thousand words of trying to explain the complexity here. Suffice it to say, time is up, in so many respects, and so please allow me to be brief.

The Last Time
When was the last time
you paused
to stare at your breath on a cool morning;
you tilted your head up
and let the sun
cover your face like a warm cloth;
you strolled through the woods
and appreciated each tree,
the curve of its trunk,
a slender pointed branch,
noted the toadstools tucked in
at its feet,
down to the dew drops hanging from pine needles
like runny noses?

When did you last observe the clouds
dance, multiply,
like the dust kicked up of a thousand horses or
drift slowly by, on an airless day
the glaciers of the sky

When was the last time
you let the cool waters of the lake lick at your toes
or took the time to kneel –
crouch right down –
to peer inside the hole of the chipmunk’s lair;
admire the beauty
of the undulating hills towering above
reflected in water below in perfect symmetry;
the cattails tinged yellow, their colour
fading, bend and bow
in the gentle breeze?

You stare breathless
Pause
(hopefully not) for the last time.

Living On A Cloud

I spent the summer after third year university inhabiting une petite village in Quebec as part of a cultural exchange program through Western University. I was joined by students from around the world, but mostly other Canadians like me. The summer was rife with love affairs and love triangles, some that lasted months, others that lasted five weeks (the duration of the program). I meant to leave after five weeks but was having so much fun immersing myself in Quebecois culture, I planned to stay the entire summer break. I spoke in French every waking minute and when my parents came to visit late in the summer, English felt heavy on my tongue, stuck in the back of my throat.

At one point, while visiting a campground where my host family had a trailer, I was riding on the back of a golf cart with a friend. My friend turned to me,

“You know this isn’t real life here, right? We’re living on a cloud.” We laughed; he was right. Our love affairs here didn’t really matter, because this wasn’t real life, right? Real life was where we towed the line, where our decisions impacted our actual reality. Quebec life was…elsewhere.

This summer, once again, I am undoubtedly living on a cloud. Life at the cottage hasn’t been perfect or without its dramas, but it’s been safe, sheltered, illuminating, often peaceful, infused with beauty, nature and life. The proximity to the lake, mere meters, is my greatest joy. I swim every day. Living here has felt more real than my real life.

The realities of school and Covid and returning home to rebuild our past life feel heavy, stuck in the back of my throat. I feel like I’m heading toward a different kind of life on a cloud, a storm cloud, not the kind of cloud you want to be on at all. No love affairs, only the heavy fog of disease that surrounds us. The reality of children being sent back to school, only to be exposed to illness; the slight sign of their humanity, a dripping nose, sending them straight home again anyway. Is there even going to be school for families who have young children, especially families, like mine, with a child who is more susceptible to getting sick? I can’t help but feel the words, “only the strong will survive” like a punch in my gut.

On the storm cloud, it rains every day. It rains down responsibilities, broken promises, false hopes and dashed dreams. While the school system in place isn’t perfect, I feel like I have to try, working parents, parents who are full time students, we feel like we have to try to send our kids back. What’s the alternative? Who’s going to look after them at home? Apple tv? Their iPads? Yup and yup. Technology is both a blessing and a curse. And we’re lucky, LUCKY, to have access to that technology that is both a blessing and a curse. What about those kids who don’t have access? Who aren’t so lucky?

Normally the start of a new school year is like the sight of a rising sun ahead, all blustery blue skies and white fluffy clouds. The sun-man is wearing cool black shades and a big smile with happy sunrays shooting out of his head, a backpack on his smoldering shoulders. I feel like Covid killed the sun-man. I picture my children, their cute faces hidden behind masks, sequestered at their desks all day long, afraid to touch one another, just hoping to be able to attend school because their parents are so tired of looking after them, of trying to be everything to everyone that they can’t keep it together anymore. School is what they desire; that’s what we’ve come to.

Nobody chose this, I know. I also know I will be one among many mothers who are pulling out their magic markers and drawing a squiggly sun-man in their kids’ skies, trying to keep things together, to keep those clouds above looking glossy and bright. I will simultaneously draw a happy face across the squiggly line of my own mouth, because that’s what mothers are expected to do.

But I won’t be happy, and my kids will know that.

I will not be happy to give up my time to write. I will not be happy to put my future on hold. I will not be happy to do half a job. I will not be happy with having people in my workspace. I will not be happy with a disgruntled, stressed out partner. I will not be happy to see my kids at home when they should be at school. I will not be happy if someone in my family gets sick. I will not be happy when there is an outbreak in my community.

My unhappiness is but a drop in the bucket, but I wanted you to know. To the mothers and parents feeling stressed, you’re not alone.