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.

 

 

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.”

 

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 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.

 

 

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.

The Curious Incident of the Frog in the Night

I’m a sentimentalist, it’s true.  I am guilty of romanticizing life at the cottage, both to myself and to others. I tend to focus on the good feelings and not so much on the bad experiences. And there’s merit to this, to being an optimist, to seeing the glass half-full, to finding the positives and looking on the bright side. To letting one’s self get swept up in the moment. But we all know that darkness lurks somewhere in the shadows.  I can’t remain clouded to what is difficult and unseemly to write about or I risk only telling half the story – that which is saccharine, sickly sweet. (See Leslie Jamison’s essay, In Defense of Saccharin(e) from The Empathy Exams for a further examination of this topic).

There’s the fairy tale version of our summer stay and the darker elements – the truth of our existence here lies somewhere in between.

Let me tell you a sinister story, reminiscent of brothers Grimm.

Once upon a time there was a princess named Penelope who loved to pick up frogs and toads. All day long, she caught the frogs, watched the toads and cradled them in her hands. At four years old, the little princess was not the best at washing her hands.

Her parents, the king and queen, were very busy running the cottage kingdom, managing three children during a pandemic and working full time. Life in the palace was not always a bed of roses. They argued over responsibilities and often left the children to their own devices. Princess Penelope spent her days down by the shoreline with her frogs.

Now, if this were brothers Grimm, the little princess would likely drown at this point in the story, but stay with me here.

One night, after the royal family hosted visitors for the weekend, the little princess began to vomit. The queen panicked. Was this the dreaded Covid plague?  Her poor baby! What had they done! How could they have been so foolish as to allow others to enter the protective bubble of their cottage kingdom?

Mysteriously, the next morning, after having vomited all night, the little princess recovered. She seemed absolutely fine – better than fine. Life returned to normal with princess Penelope catching her frogs down by the shore. The king and queen stopped worrying about the little princess and fell back into their work.

A week later, the vomiting happened again. This time, there had been no visitors. Was this some sort of evil spell?  No – poison.

The king happened to remember something he once read in a book of potions about toads excreting toxins.

Little princesses aren’t very good at washing their hands. 

Busy monarchs seldom have the time to enforce proper hand washing after every single held toad.

When a toad is squeezed, they excrete a milky poison from their eyes toxic to their enemies. In addition, many water frogs also have bacteria and can carry salmonella, which can lead to some serious intestinal upset. Through further research, the king and queen also discovered that the substance coating certain frogs and toads can be hallucinogenic.  So the story of the princess kissing the frog who turned into a prince – who knows?  Maybe that’s what she thought she saw, high as a kite.

Furthermore, because a frog’s skin is so porous and takes in its environment so readily, holding it in your hand is akin to having someone hold onto your lung. That cannot feel comfortable, and so, perhaps it is best to leave the frogs and toads be.

Now that the case of the curious night vomiting has been solved, his and her majesty have gently, but firmly, instructed the young princess to limit the number of frogs and toads she holds and to wash her hands after handling every single one. Every single time.

According to latest reports, “I’m holding a toad in my hands!”, not much has changed.

And so this story – and her nausea – may continue unhappily ever after.

But, honestly – what can you do?  She’s a kid. Kids are disgusting. And to those who would judge: if you think your kid hand-washes after doing something as dirty as wiping their own ass, check next time, use a magic mirror or whatever you have to do. And when you watch them walk out, hands dry, wipe their nose and pass you by with a grin, maybe then the frog vomiting won’t seem so bad.

Accompanying every bit of life, every piece of beauty, there’s a darker side.

“Oh, I just love the loons!” I told one neighbour,

“Yes, well, they’re not as great as you might think.”  The loons eat the native ducks’ eggs, effectively almost abolishing them from our lake. And the ducks that do survive, another neighbour informed me,

“The ducklings – the snapping turtles pull them under by the legs, one by one.”  One webbed foot at a time.

Nature is murderous, cruel, relentless, toxic. Leeches that suck your blood, wasps that sting beneath the eye. Toads that poison little princesses like a blood-red apple.

At the end of the summer, I’ll hold a picture in my mind of our sweet four-year in a pink tutu bent over the toad in her hand. All eyelashes and a mop of curls. The remnants of salmonella on her small hands.

I’ll try not to get all sentimental over that picture, over the notion of a tiny girl cuddling with her toads, enjoying her warm summer days, the sparkle of the sun reflected in the water, dazzling, under a bright blue sky, the apple of the frog’s eye.  That kind of romanticizing, especially in writing, is enough to make you sick.