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.

 

 

I Call Bullshit

Folks, can we cut through the bullshit for a minute. To give you some back story on why this is coming up, let’s just say I’m working on a special project to help update language as it pertains to Down syndrome. I’m all over this project. And do you know what gets my hackles up, what gets me fuming and brooding, the smoke rising? Outdated beliefs and preconceived notions that equate to the lives of people with Down syndrome being worth less. We have come so far as a society in the treatment of persons with Down syndrome, to get to this point. Let’s be honest though, the bar was lower than low. When you start at dumping babies off in institutions with no adequate care or attention, lacking basic requirements like diapers, these babies covered in their own filth, there’s nowhere to go but up! But where have we gotten to? How far have we come? Let me tell you.

People with Down syndrome are valued and loved members of their families. There are people with Down syndrome who get married and have babies; who run businesses and run marathons and become teachers and airline stewardesses. Who star in tv shows, win Olympic medals and get nominated for Oscars. Those who are gainfully employed, writing blogs, public speaking, advocating, and those who would very much like to be gainfully employed. With medical advances and improved health care, people with Down syndrome are living longer, into their sixties and seventies; they are studying and graduating from high school, some pursuing higher education, others whom have been awarded honorary degrees, masters and doctorates. There are individuals with Down syndrome who are helping to run philanthropic organizations, and many who are volunteering their time to make the world a better place. Does this sound like maybe these individuals are contributing citizens? It is time we start treating them as such. It’s time for us to go after outdated ways of delivering a Down syndrome diagnosis and talking about Down syndrome.

I cannot tell you how many parents I have met who told me one of the most upsetting aspects of finding out their child was going to be born with Down syndrome was that those responsible for their care and that of their child repeatedly brought up abortion. Down syndrome is not a reason to abort a child. You don’t want a baby, fine. You screwed up, the condom broke, you were raped, you can’t become a mom, you’re too young, too broke, too heartbroken, too lost. There’s a risk to the mother or medical complications that make the fetus incompatible with life, fine. I am not against a woman’s right to choose what she wants to do with her own body. Sorry, not sorry, I’m just not. There are so many reasons why a woman and her family may want to terminate a pregnancy, but Down syndrome, Down syndrome should not be presented by medical professionals as one of them. The belief that Down syndrome in and of itself is a reason to terminate is a LIE. And we keep perpetuating it, because there aren’t enough voices stopping to say, Hey, that’s not quite right. In a doctor’s office, somewhere right now, a woman is being given a prenatal diagnosis of Down syndrome, and that doctor is going to offer her an abortion. The act of offering is pointed. The option of an abortion is always there; I don’t want to take that right away from anyone. But to suggest abortion, well that’s something, isn’t it? We don’t offer a woman carrying a typical baby an abortion though, so why do so with a woman carrying a fetus with Down syndrome if not to suggest that life is worth less? That is the lie and the bullshit right there. Seriously, think about it for a minute. Imagine you are pregnant, and the doctor asks if you want that taken care of. What the fuck? Now I’m getting angry. The lives of people with Down syndrome are not worth less, and to suggest so by offering an abortion is complete bullshit and it needs to stop.

But what about if the parents feel like they can’t meet the needs of a child with a disability? Listen, I am in a position of absolute privilege, and I know this. From the colour of my skin, to my address to the extra zero at the end of my husband’s salary, I know this and that is why it is even more important that I say something, that I speak out against society’s wrongs. The parents who don’t feel like they can do it, we need to support these families! Adequately, and as a society. In Canada, the structures are loosely in place, but we need to make them more robust, accessible and add stability.  And just as important, families need access to balanced information about Down syndrome.

“Injustice anywhere is a threat to justice everywhere,” said Martin Luther King Jr.

I saw this quotation emblazoned on the side of the supreme court building in San Diego, California, and it has stayed with me. Any group being denied its basic human rights and dignity is a threat to everyone’s freedom. If you don’t feel compelled to show compassion toward your fellow human beings, then at least understand that one day it is going to be you or someone you love. We are all dis-abled at some point in our lives. We need each other and we need to hold one another in esteem. Continuing to view people with Down syndrome as less than is a concern that befalls us all. What kind of a society do we want to live in? I know the kind of society I want to live in. It’s one where we all belong, and where we are equally valued from the time we are conceived, until the time we die. There’s a poignant line in Megan Stielstra’s collection of essays on fear; she’s quoting a friend who rephrases able-bodied as “temporarily abled”. We need to acknowledge people with Down syndrome are just like us. They are us. There is no us that does not include everyone. We need to stop offering abortion and pretending we aren’t part of the problem. We need to fundamentally change the way we think about Down syndrome – not as a problem to be fixed, or a medical condition, but as simply another way of being. As an equally valid and valued point on the spectrum of human existence.
I’m tired of the status quo. Tired of fighting against outdated language and angry as hell that people with Down syndrome aren’t being treated better. They deserve better. We all do.