On Writing Retreats

A woman sitting on a wood deck is reading from her work on a beautiful fall day to a group of women

On Writing Retreats.

The first time I organized a writer’s retreat I did it because, as a mother to three young kids, I wanted the time and space to write. A word to the wise: if you want time and space to write, don’t organize a writing retreat and facilitate it yourself. Renting a space meant I had to do all the grunt work. I was preparing lunches and bringing in yoga instructors and providing feedback on writers’ work. With a clump of memoir writers, I was faced with participants in tears and traumas that risked repeating themselves, skipping from body to body like a virus to a host. How to manage it all, in my new-found role of hostess, chef, therapist, teacher? While still making space for my own emotions? In truth, I didn’t, I could not. I resigned myself to giving the time and space to other women to write, and when I did that I encountered a truth perhaps greater than the value of that writing time I was giving up. Hosting the retreat was a time for me to teach, and to help other women find their story, their voice, and share it with the world. There are times to write and there are times to learn. Teaching is the highest form of learning. Despite being relatively good at math, I’m reminded of this every time I try to give my ten-year-old daughter a math lesson. And it’s not that I necessarily learn directly from the writing of the writers I’m working with, though often I do, but I learn from their bravery; I learn from their curiosity and courage. I learn from their open hearts. And in return, I offer them mine.

Running a writer’s retreat has allowed me to listen deeply to the work of other women writers. And why is this significant? Why do we have to make space to hear the voice of women writers, specifically? Aren’t men and women writers treated equally now? Women writers continue to work within the context of some invisible and some not so invisible forces working against them.

Some not so invisible forces: Recently, the finalists for a Canada-wide Creative Nonfiction contest were announced and the five finalists happened to be pieces written by women. On the contest’s Facebook group for writers across Canada, an individual felt compelled to comment: “Five finalists are women, really? Have we gone too far?” Have we gone too far. The response from the other writers in the group was outrage, incredulity. Too far? The pieces were judged anonymously, irrespective of sex or gender, dependent entirely on the merit of the writing. One of the finalists identified as a trans male anyway, had the commenter cared to be inclusive. Too far? No, we haven’t gone far enough. Would it surprise you if I said the individual who made the comment was a woman? I’m reminded of a former neighbour who read an article I’d written in the newspaper, my very first. “Did your husband help you with that?” she wanted to know. When I insisted that he hadn’t, she looked at me, surprised, “You wrote that all by yourself? Are you sure?” Are you sure? Yes, I’m sure women’s voices deserve a place to be heard, a place where we can be listened to, a place where we can be believed. Yes, I’m sure, we haven’t gone far enough.

Invisible forces. Invisible forces can look like emotional trauma. Mothers are often the work horses expected to carry the weight of emotional labour in the family, of children and spouses, with little space left over for themselves to think and feel. Women need safe spaces to express those feelings, but we also need spaces where we can work, unencumbered by expectation or any other form of labour, besides creativity. Women, all women, deserve access to their creativity.

Invisible forces can look like sexism, racism, ableism, ageism, classism, and heterosexism (homophobia). These forces are invisible in that you can’t pinpoint their origin in physical form, but the effects and outcomes are real. A clear example for understanding the invisible effects of racism against black women recently came to me by way of Audre Lorde’s 1970s book Sister Outsider. She wrote, “I can’t tell you how many good white psychwomen have said to me, “Why should it matter if I am Black or White?” who would never think of saying, “Why does it matter if I am female or male?”” This struck the chord of truth. While I acknowledge my privilege as a white woman, I have experienced the sensation of being lesser than in comparison to a man based solely on the factor of our sex. It’s in the way, in a writer’s group, when a man enters the circle of discussion among a group of women, his voice holds the most importance, his voice is believed and held as the highest truth, his is the voice of authority. This isn’t to say men are always handed the easy ticket in, but more so to say that women among men pay a higher price to enter. As Lorde so beautifully illustrated, it isn’t enough to say we are equal, there needs to be a bigger cultural shift away from preconceived values of worth and who holds knowledge and who has a right to hold that knowledge. Can we, as a culture, listen deeply to the voices of women, our gatekeepers of emotion? Can we push back against ideas that women need permission to write and be heard and that what they have to say is somehow lesser than?

After facilitating my latest retreat, feelings of wellbeing and gratitude washed over me. I spent the weekend as one of fifteen women sharing stories, with catered food and a team of other professionals to share the load of running the weekend. I’ve learned a few things about how to run a retreat as the years have gone by and I continue to learn. As I drove home alone along the open stretch of road, rows of pines waving at me as I passed by, I knew I had experienced something with these writers so seldom granted to women, and especially mothers: freedom.

Tips for organizing your own writer’s retreat:

  • Know your why. I thought I was getting into organizing writing retreats because I love to write, but it turns out I also love to teach and facilitating The Write Retreat has been a perfect marriage of these skills. I find empowering and supporting women writers deeply gratifying.
  • Know your audience. I’ve heard of a doctor who runs writing retreats for other doctors. Find your niche by considering what specifically you have to offer. With a background in creative nonfiction writing, I attend to attract more memoir/ personal narrative time writers to my retreats.
  • Create a sustainable business model. Consider partnering with other writers and other businesses that can add value to the service you are providing. For example, working with a venue that can provide administrative services for you saves time and energy that can then be put back into the retreat while inviting guests speakers brings in expertise to support the work you are doing.
  • Put your heart into it. Your participants are counting on you to deliver quality programming. Are you able to meet as many of the group’s needs as possible? Consider setting up Zoom meetings beforehand to get to know participants and find out what those needs are. Send out a questionnaire afterwards and reassess how each session went and learn what you can do better for next time. Don’t be afraid to let your passion shine through.
  • Create a safe space. As writers, we know how vulnerable it can feel to share our work, especially work that’s newly formed. Create parameters around how work is shared and how feedback is provided. Focus on what works in the piece and celebrate loudly.

 

Tips when deciding if a writing retreat is right for you:

  • What do you hope to get out of it? Are you seeking comradery and community or solace and space? Do you want intensive feedback, one-on-one time, or time to play on the page? Each writing retreat is going to offer a balance of these things—a coming together and time apart. Feedback and inspiration. Find the retreat that offers the balance that’s right for you.
  • Does it add value for you? Is there a guest author you want to meet or a writer you really want to workshop with? Is the location ideal? Is the timing right given the stage of your project, or during the period when you want to get a new project going? Is it the chance to relax and inspiration that you need? The retreat needs to bring value to you and your work.
  • Does it feel right? Often, we know in our gut if something is right for us or not. Read the fine print. Does the idea of sharing a room with a stranger put you off? Are your food requirements able to be met? Is the retreat space accessible for your mobility needs? Are you attracted to what’s on offer? If not, wait for the next one.
  • Are your friends interested? While attending a retreat on our own is a wonderful opportunity to meet new people and make connections with other writers, there’s a level of comfort that comes with bringing a friend along. Also, reading past participants’ testimonials can be a great indicator of what you may be in for.
  • When in doubt, reach out. My expectations is that if a business wants my patronage, they should be willing to answer any questions I may have. If you’re at all unsure, reach out with any questions and an organized facilitator will be happy to answer them.

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.

Dear New MFA Students: Welcome to the Program

Dear New MFA Students: Welcome to the Program

Writer’s Note: This post is inspired by the lovely buddy I’ve been paired with who is heading into the first year of the MFA program at The University of King’s College. They are taking my place as the new intrepid student I was a year ago. In talking to them, as I reflected back over my first year, it occurred to me that some of the information I shared may be useful to others, maybe even entertaining…

Psst. I’ll tell you a secret. Every student, whether they admit it or not, is encumbered by two universal experiences when entering an MFA program: imposture syndrome and the intimidation factor. Imposture syndrome looks like: I don’t belong here, or—my writing isn’t good enough. The intimidation factor is thinking like everyone will be a better writer than me, because they’ve done ‘x’, which derives from the false notion that your writing isn’t good enough. Hopefully, these thoughts come and go so that you aren’t plagued by self-doubt constantly, but I want to reassure you these feelings are normal. Some encounter them more than others. This is a well-documented phenomenon by writers of all stripes. The angsty voice of doubt whispering nasty thoughts in the writer’s ear, clouding their judgement and creativity. Banish that voice, don’t put up with it, shoo it away. You’re in an MFA program now, and—surprise!—that means you are a professional writer with your own form of talent. You got into the program, didn’t you? You are meant to be here. You have earned it, even—especially—if it doesn’t feel that way. You write and you write well. AT LEAST one other person thinks so. We’ll revisit the intimidation factor in a moment.

You’re here—now what? Get writing! Seriously, the cliché, you have no time to waste, is a thing. If you have research to do, start researching. Books to read, get reading. Pages to write—well of course you have pages to write—start getting those ideas down.

The way the University of King’s College MFA program in creative nonfiction is set up, after the summer residency in June, and a few pesky assignments, you have the summer ahead of you to do with as you will. I want to tell you to relax, enjoy the summer—I really do—and you genuinely should take some down time because the fall term is fast-paced, but hear me out: get ahead this summer. Write enough so that when September comes, you know you already have at least a submission or two prepared. Work enough that some of the assignments are off your plate. Look ahead to the assignments you have coming so that ideas filter through your consciousness. As you read good books throughout the summer, those ideas will eventually have somewhere to land. Take notes. Get organized. Write most days. Then relax. By the end of the second term (first year), many of my classmates and I had run out of gas. The work I put in through the summer got me through to the end. I did not for one second think of devoting my summer to writing as “lost time”, I thought of it as a return on my investment. You are spending an enormous amount of energy and resources to get through this two-year period. The MFA program is a once in a lifetime experience. Best to make the most of it.

But if you do have commitments, such as children, ill or aging relatives to look after, your own health, perhaps it’s full or part-time employment, do what you can, when you can. Every bit helps. I make it sound as though I toiled day in and day out, but my reality that first summer was that I spent a significant amount of time looking after my family. Your reality will demand the same of you. Find the blank spaces and fill the page when you can.

And once you do start writing, don’t stop. You will have to go back, edit, and revise when working with your mentor, but keep looking forward, ahead to the next piece, what’s the next section or essay or scene to lay out? Once you build momentum, keep the momentum going.

Remember: this is not a solo venture. The intimidation factor. Ahh, we have arrived. I mention this because you are now a part of an impressive group. In the MFA program you will encounter seasoned journalists, PhDs, MDs, MBAs, professors, editors, publishers of literary journals; writers who’ve headed up newspapers and magazines, whose writing has won prizes, appeared in The New York Times and who maybe have even published a book or two—or more. Maybe you are one of these writers with professional or academic notoriety—or maybe you’re not. Maybe you’re like me, and coming from a different field entirely, relatively “new” to the writing game compared to classmates with whole careers behind them. Writers’ backgrounds are as diverse as the books they produce. Our lives inform our writing. Have you lived? I’m guessing you have. Nobody else is better suited to tell your story than you, and nobody can tell it the way that you can. That your MFA colleagues come from rich and varied backgrounds full of experience is wonderful news! Learn from these people. You are now colleagues. And give freely of yourself in return.

Psst. Here’s another secret. A little tip from me to you. Pretend like everyone in the program is your friend. You heard me. Just do it. My husband baulks when I tell him this. “Just because you’ve met somebody, Adelle,” he’ll say, “doesn’t mean they’re your friend.” He’s right and wrong. If you adopt this strategy, everyone in the program will not, decidedly, become your best friend. But doesn’t it make for a better world and friendlier atmosphere if you imagine that they will be? And I guarantee you will make a true friend or two—or twenty in the process. Moreover, some of these folks will be your first readers, your work’s biggest champions. These people are your allies. Who better to understand the ups and downs of the writing life? Who better to commiserate with over assignments and deadlines? The pains and pleasures in the pursuit of publication?
It took a short time for me to realize that every writer in the program was a unique talent, otherwise, as mentioned above, they wouldn’t be here. What I’m getting at is that comparing yourself to others is futile. Wasted energy. You can expect and celebrate that you and your classmates will each become successful writers; what that definition of success looks like varies depending on individual goals. As you move through the program together, one writer’s success does not detract from another writer’s success. While this may be stating the obvious, rejection is part of a career in writing, so if you do feel the need to compete, race against yourself and see how many rejections you can collect (like gaining friends through manifestation—you’re bound to gain some acceptances along the way).

Oh! And you will be graded. The grading part feels weird, almost wrong. You’re going to put a mark on my heart work? The two seem at odds. My advice is just to embrace it, again, you are a student, and this part of the process can feel rewarding. When else do you get a grade for doing your work? It’s helpful to remember that if you complete the work on time, the grade range for MFA students runs from above average to outstanding. We are all above average writers. Say it with me. We are all above average writers. See? Doesn’t that feel good. Better yet, forget about the grades and use this incredibly brilliant group of individuals to your advantage: tap into their knowledge and skill sets. Which reminds me.

Becoming a part of the MFA community inevitably exposes you to the larger literary community. Make those connections too, where and when you can. Industry professionals will come talk to you. Their presence and attention are part of the perks you’ve paid for. Follow these writers, publishing professionals, editors, agents and so on on social media if their ideas interest you, or if they are someone you could learn from. Don’t be afraid to reach out to them on an individual basis, after you’ve heard them speak, and make a personal connection if you have a comment or question and feel compelled to do so. Do it even if you don’t feel compelled to do so, but know you should. What do you have to lose?

You are a literary citizen now. What does this mean? It means that you should support your fellow classmates whenever you can. Their successes are your successes. Something as small as a ‘like’ or a ‘follow’ is a boost. Many professional writers dedicate time to promoting, celebrating and actively engaging in other writers’ work from reviews to profiles to interviews and attending book launches. The MFA is a good place to get used to this culture of reciprocity, even when the act of writing can feel so singular—it’s not. We’re sewing from the same fabric of the universe, though each patch has its own sheen.

I recall being fourteen years old and openly mocked for the first time. I was a competitive gymnast, peppy and cheerful. The ponytail wagging kind. It may surprise you to find out that not everybody likes peppy and cheerful. I met a wiry looking girl my age who I later found out had a crush on my boyfriend, which may explain what happened next when I introduced myself.

“Hi! I’m Adelle!” I said in my cheeriest tone, extending my hand in greeting.

She did not, I took note, shake my hand.

Instead, she turned her head and said to the group of girls behind her, “Hi! I’m Adelle,” in a snarky mock tone.

While the girl’s reaction says much more about her issues than it does about mine, I share this story to arrive at a point: nobody is going to openly mock you or your work in the MFA program, I promise. There are rules and guidelines around giving feeding, which will come to your attention. Others will be looking to pinpoint what works in your pieces of writing, rather than what doesn’t, because that is helpful information. They will likely have questions too, and that’s okay. Your mentors, professional editors and writers, will gently guide you toward questions that will strengthen your work. Listen with an open heart and you will not be wounded. You are not your narrator, and constructive criticism will pertain to the work.

I could talk to you about deadlines and word count, but I won’t bother, because Dean is there for that.

Perhaps all of what I’m saying doesn’t fully resonate with you, and that’s okay. You get to make this MFA program your own thing. It’s quite likely that you and I are entirely different people. You may be a brood-in-the-dark-corner-of-the-bar-pontificating-and-pondering-life’s-existential-crises, fist-to-forehead, cigarette-dangling-from-your-lips kind of writer, while I’m more of a friendly-run-with-my-dog-ponytail-wagging-mom-of-three-kale-smoothie-drinking-optimist-who-loves-sunshine-and-trails kind of writer. That’s cool. I’d be happy to sit by your side in the dark for the day and learn from you too.

What matters is that we’ve come together from our various corners of the universe, thread in hand. We’re primed to create something, and this is our moment to shine. Raise your needles. On your marks. Get set. SEW!

I hope our seams will butt up against one another’s. I genuinely can’t wait to see what you will make. I know it will be beautiful.

 

Enjoyed this post? Consider subscribing to my author newsletter, The Write Page, for writing, reading and retreats that inspire—many thanks! And writers, please let me know about your author newsletters, I’d love to read them. Reach me through my website adellepurdham.ca. Questions & comments welcome.

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.

Two Hearts: on book launches, disability, writing community and Amanda Leduc

Recently, after having read The Book of Delights, I fell a bit in love with the author, Ross Gay—the book was that good. This falling in love with people is something that happens to me as a person who holds romantic notions inside her head. I let myself get swept away. Offer up my heart. It’s just not something I’m willing to keep boxed up and tucked away. I wrote Ross Gay a note, professing my undying love for his book and he…never wrote me back. Rejection. This is the name of the game with being a writer and being a human. Sometimes you connect with the other person, other times you don’t.

But this post isn’t about Ross Gay (even though I think his work is wonderful and definitely worth reading), and it isn’t about rejection (though writing involves heaps of it); instead, this post is about my admiration for disability author and advocate Amanda Leduc and it’s about organizing a fabulous book launch and it’s about writing community.

I attended Amanda’s virtual book launch recently, hosted through a Zoom webinar with the support of her local bookstore in Hamilton, Epic Books. I’m going to stop right there for a minute. Local bookstores. Take a minute to shop in them. I placed a huge book order in my hometown’s local bookstore right after Amanda’s talk and got a lovely thank you note. I’m learning about the beauty of local bookstores, and I have my MFA to thank for that. Local bookstores support authors by hosting literary events in their spaces (or providing tech support online), and they buy local authors’ books and host them for book signings and other events. Most books sell by word of mouth, so these types of on-the-ground events are so important. I ordered two of Amanda’s books last night: Disfigured and her newest release The Centaur’s Wife. Book events can equal book sales, which is obviously good for an author.

Back to Amanda Leduc’s book launch. What made it so good was the bringing in of others and Amanda herself who is articulate, real, vulnerable and intelligent. She talked about “post-traumatic growth” and how some people use grief to imagine themselves into a new world. She talked about grieving, but also surviving, “the wonderful work of survival,” she said. She writes mainly fiction, but she’s an idea writer. I love idea writers. And by that, I mean, there are juicy bits I can grab onto that inspire my own work. Here’s an example of a thought fragment that appealed to me, “…lay them out in the sun…what the light shows.” The idea here of something being examined, exposed, but with the light, you know it’s good, pure. I can work with this.

Amanda bravely shared the story of losing her best friend to cancer in December, “you wake up and your world is completely destroyed.” The core of her book, The Centaur’s Wife, is about grief and loss. Desire and grief intertwined. She realized almost near the end of writing the book, which she started in 2016, that she was writing a road map for herself about grief, to deal with the loss of her best friend. I cried tears with her on the other side of the computer screen as she told the story. And I cried harder when she said that sometimes a happy ending is putting one foot in front of the other. If you’ve been through grief, then you will know what she means.

Amanda Leduc not only spoke about writing strange worlds, with fascinating details such as, were they to be real, a centaur—half person, half horse—would need to have two hearts, but she gave inspiring bits of wisdom to writers of all stripes.

Simply by attending her book launch, I learned what I would like my own book launch to look like. She had a fantastic host, author Jael Richardson, and an engaged interviewer in author Larissa Lai. A beautiful singer/songwriter, Victoria Carr, who was cast as the actor to read Amanda’s audiobook for The Centaur’s Wife, opened the launch with a moving song about a high green hill. Anne Collins, Amanda’s editor, was next interviewed for her perspective on working with Amanda to get the book to completion, which was so fascinating. Anne said her job, as an editor, was “to ask her the questions to help her see what she’s making.” Anne also served as a spoke’s person for the book, saying that The Centaur’s Wife is a huge answer to the question of what a diverse fairy tale can be, and she added that Amanda’s gift is “to make us feel so much about mythical creatures.”

As an aside for other writers/authors, there was a tech elf behind the scenes posting links and other bits of information in regard to accessibility, book buying, and presenter info in the chat that was perfect and necessary for the wonderful flow of the evening.

Amanda then spoke in an interview/conversational format with interviewer Larissa Lai about The Centaur’s Wife and the writing process. She talked about advice she received early from the brilliant short-story writer John Gould, “You can do whatever you want in a story!” and she took those words to heart creating fantastical worlds. She also shared Sheila Heti’s words, “You’re writing yourself into the person you need to be to finish the story.” Amanda faced real struggles with her book, overthinking at the beginning and getting stuck later on in the writing process, which was nice as a writer to hear and commiserate. But she advised writers to “trust the story and where the story is taking you,” acknowledging “it’s a hard thing to trust the narrative and trust yourself as a writer.” “Get comfortable with the ragged edges of things,” she says.

She talked about finding a writing community, which is a common refrain writers hear often, but then added a qualifier which I loved, “a community can be one person who is just your cheerleader.” I like how that takes the pressure off. One person seems manageable. Her description of finding the right actor for her audiobook also taught me about that process of the audition reading and finding someone who understands your book.

But Amanda Leduc isn’t just an incredible writer, she’s a disability advocate. A woman with Cerebral palsy. I am deeply inspired by her commitment to the disability community and to making her book available in every accessible format: braille, accessible pub, audio and conventional print (Check out CELA and NNELS for more information). I hope to be able to do the same with my books. Amanda is also the Communications and Development Coordinator at The Festival of Literary Diversity, FOLD, Canada’s premier literary festival. She uses the centaurs in her book as a disability metaphor; an “act of disability reclamation,” as Dorothy Ellen Palmer put it. Her book asks the question: who survives catastrophe? Maybe someone who’s gone through adversity, Amanda proposes.

She talks about her own mindset switch: “Not, why don’t I walk like everyone else, but nobody walks the way I do.” I love the empowerment of her words. “There’s always been a space for me,” Amanda says, “I just needed to claim it.”

Amanda’s claim that writers inhabit weird worlds was a reminder to me that I spent my evening listening to a woman talk about a book about centaurs and thorough enjoyed myself. But The Centaur’s Wife is so much more than that, as is every world we create as writers.

At the end of her book launch, Amanda took the time to properly thank the many people who’ve helped her along the way. “A book takes a village,” she said.

During my writing day, I sent out a new essay for feedback to four different people, for a variety of reasons: from beta testing to fact checking to literary content to seeking permission to tell someone’s else’s story. I couldn’t agree more, Amanda, it takes a village. Thank you for your wise words, the many ways you are giving back and changing the disability narrative, and congratulations on the birth of your new novel! Amanda Leduc is definitely a writer whose work you should fall in love with.

 

 

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.

 

 

Leave

I want to be upfront about something. I love my family; I am grateful for my quality of life and the joy I get from spending my days writing. I love my husband who keeps me particularly happy and understands my humour when I call him “pony” and tell him to “make it rain” a pros pos of nothing, at least not something I could explain out of context (or in context). I love having my kids in school and I feel an extra abundance of affection for their teachers this year who educate them during the day. After Covid, maybe all parents of school-aged children are feeling this way? I’m having these fond feelings while simultaneously repeating a silent mantra in my head. One that keeps popping up. Leave, the voice whispers. Just go.

I’m completely happy in my work life. I love my Master’s program, engaging with other writers, having my work reviewed and receiving feedback and criticism and giving that gift back to others. And attending literary events. I’m mostly new to the scene of book readings, workshops and panels and it’s been such a rich experience. But I’m missing something. Something Covid has taken from me.

Freedom.

The freedom to connect with others in person, to gather over the holidays and, especially, to travel. I miss travelling. I miss traveling the way you miss an old friend, deep in my bones, like a visceral ache, a phantom limb. The world was there to explore, full of enjoyment and novelty, and now it’s not.

The other day, I was in the middle of an online poetry reading session, one that I was truly enjoying, when my eye caught the bottom of the Zoom screen window. The word ‘LEAVE’ stared back at me in bright letters. Leave. LEAVE. Yes! That is exactly what I want to do. That voice inside me screams louder.

I want to go away; I want to leave right now and be gone, away from here. I tell my husband, “My brain is sick of this place.” I am fine, physically, but my mind, my mind is not. I spend most of my day in the same room where I work, sleep and often eat. My mind is craving something new. An adventure. An escape. LEAVE.

I want to plan a trip, NEED to plan a trip. I pull up travel advisories and wow, that’s just a whole lot of red. The world is bleeding.

I’m in the head space where I want a vacation to look forward to, a means of escape to break up the dreary winter months ahead. I regularly feel that pull this time of year, but this time, no amount of planning is going to make any difference. Covid will decide when and if I go anywhere.

And I know, I know, this is a small loss in a sea of loses. Only a drop into the pool of our collective tears. But it’s how I’m feeling. I’m feeling the loss of experiences I would have had. I’m feeling the activities that have been taken from a chunk of my kids’ childhood. I’m feeling like my home has become a box, or so the story goes at bedtime, “The mommy lives inside a box and the walls keep getting smaller and smaller.” Penelope’s eyes grow wide. “Oh no!” she says, “what happened to the mommy inside?” It isn’t good. For one, she feels squished, which makes her want to lash out.

Space. What an interesting construct. Physical, as in measurable dimensions, but more so, mental, parameters of the mind. Having my husband work from homeis wonderful in so many respects, but before, pre-covid, he travelled extensively, and I was used to his absence, to filling that space. Now there is no space to be filled, instead there is overlap. And even when he was around before, he drove on the daily to his office. I had days without children that were to myself, when I had to cater to no one’s needs but my own and the needs of my work. Not so in the days of Covid.

“Don’t take this the wrong way, but I’m a bit sick of you too pony,” I tell him, not unlovingly. But it’s more than that. I’ve been a ‘stay-at-home’ mom for the past nine years. Finally, FINALLY, and I have been waiting a few years for this, I was getting to the place where I no longer felt like the mommy-in-a-box, caged in. I chose to be home looking after kids and then chose for that time to end. I was regaining my freedom and autonomy. I signed up for my Masters that included two weeks away, AWAY per year and I was so SO excited about that prospect. A break from my family AND the chance to hang out with writers and just write? With the bulk of my time spent at home with my family? Perfect. I was euphoric to be accepted into the program. The trip out east. The New York City getaway. Both since gone virtual. That low-residency piece was the cherry on top. Covid has eaten the cherry, and some of the cake, too.

This isn’t just about me needing time away for myself, but it is that too. I’m better for my family when my own needs are met. And I care about them receiving the best version of me, a mom and wife in a healthy head space, not the mommy-in-a-box who feels claustrophobic and desperate. At this point, I don’t even know if what I need is to go somewhere else, or if just knowing that I could go somewhere else would be enough. I suspect the latter. Call me spoiled, but I don’t do well with being told I can’t.

Over the last few years, I’ve gone on trips by myself. These might be for a conference or to visit a friend, but they are scheduled time away. That space worked its way into my life because I needed it. We all have different needs. Mine involves space and time to myself and in Covid-era, this has become impractical, unsafe and in many instances, impossible. Even going to the library has become perilous.

I am not oblivious to the rest of the world’s needs, but I am acknowledging this one small loss, because maybe, just maybe, you feel your own version of stuck-in-a-box. Covid has pushed the walls of our world smaller.

While instant gratification is nice, I do seem to have a knack for the long hall. Writing a book. Long trips. Marathon training. My marriage.

Waiting for Covid to go away is my least favourite activity, but in this case, I want to be around for the long haul and so I will hold off on the gratification piece. Other than solitary dog hikes in the forest, I’m mostly staying home. Sometimes sitting on my hands, watching my mouth, pulling at my hair. But I’m staying home to keep my family safe. I’m staying home to keep your family safe. I’m working through my personal frustrations and dissatisfactions because it’s the right thing to do. I’m pushing back against the walls closing me in created within the confines of my mind. I’m especially holding onto memories of past travel, allowing myself to dream about a near future where everyone is vaccinated, the world is safe again, where I could go somewhere if I wanted to and hoping this small grievance and annoyance is all I will have to face.

For the time being, I’m relying much more on a cheaper method of travel. Leave, just go, the voice whispers. And so I pick up a book and fall inside, and that world has never been more appealing.

 

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.”