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

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

Sometimes the story comes to you.

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

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

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

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

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

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

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

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

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

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

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

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

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

Excluding groups of people is not the answer.

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

End of story.

Mom Guilt

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

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

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

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

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

ARGHHHHHHHH

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

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

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

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

 

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

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

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

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

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

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

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

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

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

The Chimera

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

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

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

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

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

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

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

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

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

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

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

Not One Excuse

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

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

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

 

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

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

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

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

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

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

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

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

 

Good, Bad, Who’s to Say?

There are two sides to every coin.  Heads or tails?  Well, depending on the side you are rooting for, which way you’re betting, one side is perceived as ‘good’, the other side as ‘bad’.  This narrative of good and bad plays into so many aspects of our lives, but lately I’ve been thinking about it in the context of how we view others.

I came across an engaging well-thought out TED talk by Heather Lanier (thanks Sue Robins for introducing me to her work) about the problematic nature of framing stories as ‘good’ or ‘bad’.  Lanier explains through the use of an ancient parable that “’Good’ or ‘bad’ are incomplete stories that we tell ourselves.”

The ancient parable of the farmer goes like this:

There once was a man who lived on a farm with his son and his horse.

One day, the barn door was left open and the horse ran away. When the nearby villagers heard about it, they ran to the farm to tell the farmer how sorry they felt for him.

“How will you work your farm without your horse?” they asked.

The farmer simply shrugged and said “good, bad, who’s to say?”

A few days later, the farmer’s horse returned, and following it were two more horses. The villagers were so excited for the farmer’s luck, they ran to his farm and told him so.

The farmer simply shrugged and said “good, bad, who’s to say?”

The new horses were not broken in, so the farmer’s son worked hard to break them in so they could be used on the farm. While doing so, one of the new horses threw him off and his leg was broken.

The villagers again ran to the farm and expressed their deep sadness about the son’s broken leg. “Now your son can’t help you on the farm,” they said with their heads hung low.

The farmer simply shrugged and said “good, bad, who’s to say?”

As the son was healing from his broken leg, a war broke out in the countryside. All the young men were sent to fight. Many died or were seriously injured. However, since the farmer’s son had a broken leg, he was not able to go. The villagers again came to the farm, to say to the farmer how very lucky he was that his son didn’t have to go fight in the war.

Once again, the farmer shrugged his shoulders and stated, “good, bad, who’s to say?”

This parable teaches us to simply be a witness to life’s events.  The idea being that peace is found by observing the events of life and removing all judgement; by sitting back and witnessing without trying to attach labels, and avoiding life’s dramas.

The principle tenant of Buddhism is that craving leads to suffering.  Either craving for something good to last or craving for something bad to end.  One who does not crave, does not suffer – or so the idea goes.  In meditation, the goal is not to judge the thoughts that come into your head, but to let them flow through your mind and watch them from a distance. Thoughts are not labelled as good or bad, nor are they held on to.  They are let go.

Wow.  This all sounds pretty good, doesn’t it?  Letting go of notions of ‘good’ or ‘bad’; meditating and watching all kinds of thoughts float by without attaching meaning or significance.  As a writer, I often try to do the opposite: I latch on to words, haul them in, examine them to death, then stuff them into a basket full of other used thoughts and ideas.  But perhaps I need to loosen up, disassociate from my body a little bit more.  My body is so needy, temperamental; it’s cloistering to the mind.

I received a rejection note this morning for an essay I wrote.  Good or bad, who’s to say?  Maybe the piece will go on to be accepted in a more reputable journal or will lead me to a connection and long-lasting friendship with an editor – who knows?  Maybe it’s eventually printed at a time when the person who needs to read it, reads it.  I can’t help but yearn toward the positive.  However, maybe the essay never gets published.  I have to be satisfied with the idea that the essay just is.  Pain and pleasure, bad and good.

The other day, out on a drive, I turned right at the last minute onto a path I hadn’t planned to go down.  I discovered a beautiful trail; the kids loved it.  Later that day, I swatted at a bug on my knee, assuming it was a horsefly, and got badly stung by a wasp.  So the story goes.  Good or bad, who’s to say?  The key is to remain open; to abstain from judgement.  This is not the same as being passive.  Even meditation – sitting being, seemingly doing nothing – is an intense exercise of the mind.

When I leave for my run this morning, I will either feel good or bad and I’m going to try to not attach meaning to those feelings.  Today’s run doesn’t necessarily signify that I’m a good runner or a bad runner, that I’m in good shape or bad shape, it is just how I’m feeling today, at this particular moment.

I see the value in letting go, but a part of me needs to rebel against this notion of watching our feelings pass by without judgement.  I’m quite attached to my feelings.  I’m all for letting the feelings that are hurtful and painful pass through me, but I’m not so willing to let go of joy and happiness.  I want to fully inhabit my body in these moments.  But we don’t get to choose.  One minute, joy, a new path; the next minute, pain, a wasp sting.  Life is just like that.

When it comes to people though, I see how this principle need apply.  In my own life, the good/bad story has played out like this: the initial Down syndrome diagnosis – pain, bad; getting to know people with Down syndrome – joy, good.  Over and over, in different contexts, the story repeats itself.  My greatest realization of all, through years of reflection and learning to withhold judgement, is that: Down syndrome just is.  And so the story goes.

 

Black Lives Matter

“I can’t breathe.” ~ George Floyd.

Pockets of the United States have descended into chaos in the week since Floyd died in Minneapolis after a white police officer pressed his knee into the 46-year-old black man’s neck. ~The Washington Post

“Peace on the left, justice on the right.” As if to say the two must go hand in hand. ~Terrence Floyd, George Floyd’s younger brother.

I’m having a hard time concentrating.  I want to say something about what has happened, about racism; I want to speak out against the grave injustices of this world, but there is so much I do not know I’m afraid I’ll get it wrong.  I don’t want to offend by not saying the right thing, but I feel a tug, an incessant urging to say something and get over myself, and people are dying – so.

I realize that as an advocate for those with Down syndrome and the disability community, there is one core tenant of advocacy that I hold dear: the view that all human beings are equal.  That I hold people with equal weight in my head and my heart.  I believe in this mantra, we are equal, we are one, but if what has happened and reading the news and following threads on Twitter has taught me anything, it is that there are just some things you cannot see unless it is happening to you.  I am not a black man or a black woman, and so I can’t speak to that experience; I can only seek to educate myself as to how people of a darker skin colour than mine inhabit the world.  I want to know.  And I don’t want or seek to speak for black people – or a person of any skin colour – any more than I desire to speak on behalf of the disability community.  As an able-bodied white woman, I can be but an ally, a supporter.  I would like to declare myself as such.  That means I am actively going to seek out a black perspective in the books I choose to read for myself and for my children, in who I choose to follow, in the diversity of the people I admire and learn from.  The more we know about each other, the more we know about ourselves.  The more we see ourselves in the other, the more fully human we become, I believe.

And sometimes I get so angry about the way we, society, treat skin colour; the same way I feel angry about how people are judged based on their cognitive ability.  The amount of melanin in a person’s skin; the count of a person’s chromosomes; the size of their frame; the sex or gender of their partner.  These factors do not define the person as a whole.  We are more than our bodies.  We are beings of heart and soul.  And our bodies, in all their shapes, sizes, orientations, limitations, colours and creations are beautiful; we are flowers, the fruits and labours of love.  And my soul is aching, wholly aching, for the pain needlessly caused because of hatred for ‘the other’.

“Injustice anywhere is a threat to justice everywhere.”  Martin Luther King said that.  I saw those words written on the side of a building once and they said something to me about how I felt deep down inside.  I’ve mentioned those words before, but they come back to me now because there are injustices occurring everywhere and I can’t pretend – don’t want to pretend – I don’t see.  There are so many people whom I love and care about who have black skin: people I’ve worked with and who are in my family, who’ve married my friends and who are my friends; people I write with or who live in my neighbourhood and I don’t want to let them down.  If I have a voice anyone is listening to, then I want to use it for good.  We have that choice.  Those of us with privilege.

I don’t believe in black and white narratives of good guys and bad guys.  That all bad guys are white and good guys are black, or vice versa.  There are black men who have done wrong and black men who have become president and done so much right.  There are white men who have done right and there are white men who have done so much wrong and become president.  Privilege.  Power.  Those who abuse it.  Those are truths I believe in.  I don’t believe in black or white narratives, but I do believe in things I can’t see, that can only be felt.  I do believe in a racism so ingrained in our society, we can’t even pinpoint it, but we can feel it; we know it exists and we cannot sit idly by.  Because when it slips out, becomes seen, it is deadly.

George Floyd is killed on camera for the world to see; and we do see it, we see it plain as day, right there on the street.  “You’re killing him, stop!” wasn’t enough.  Simply asking wasn’t enough.  His murder is a crime against humanity.  Against men and women, mothers and children everywhere.  George Floyd was somebody’s son.  He was once held, a babe, safe in his mother’s arms against her warm chest.  One of his final words was “mama,” he cried for her, for help.  Nobody saved him.  A man took his life.  And now we are left to weep.  We are left to weep and wonder what could I have done?  We rightly wonder, what can I do differently now?

We can raise our voices to denounce hate.  Even the hate lurking that we cannot see.  We can actively seek out the voices of the other.  What do black activists have to say?  Those are the voices I want to lean in to right now. Those are the voices who have my ear.

And if you aren’t an ally to the other, you aren’t an ally of mine.

 

What Would Happen?

What would happen if you followed your dreams?

 What would happen if you followed not just your dreams, but that little voice in your head, the one you want to ignore because it completely throws the balance of your life into chaos; that voice with the cord that attaches itself all the way down to your heart.  And when that heartstring is pulled, there is no ignoring its song because it’s playing your tune, the tune of who you truly are.

What would happen if your baby was born with Down syndrome and that caused you to question many long-held beliefs that had you standing on shaky ground.  Would you then look around at the people standing next to you anew, with a startling clarity?  Would you live your life differently, follow a different path?  Maybe.

What would happen next?  Well, your baby would be born and you would be a mother or father, of course.  Personally, I have never really embraced the term ‘special needs mom’, but if that floats your boat, you do you.

You would research the proper use of language to be able to use it correctly with your own child.  Was it ‘Down syndrome’ or ‘Down’s syndrome’?  A person with Down syndrome (lower case ‘s’) is the correctly spelling and usage in North America, while in the UK, Down’s syndrome spelled with an apostrophe is the norm.  You would read and you would learn and, something new – or perhaps, not new, just reimagined – you would write.  You would write a blog and one day – today! – you would have been writing that blog for almost nine years, because you started when your first born came along as a way to keep in touch with family far away.

Then what if that blog became something more to you?  What if that blog became a story you needed to tell the world?  What if you wrote a newspaper article, just one.  Just one measly article – what could it hurt?  And what if the rush from that one published measly article and your hope to help create a more just society for your daughter would then inspire you to write more, to keep going, to dig deeper, to settle right into advocacy work.  And what if then, you joined a board of a local Down syndrome association and you met families, many wonderful families, who have children with Down syndrome, families you may never have been fortunate enough to have met otherwise, but they didn’t really have a regular place to meet – so what if you set that up?  What if you coordinated a meeting place and what if you showed up there, who else might you meet?  And what other stories would be told?  Many.  And what if those stories filled your head and some danced for joy and others sank with sorrow into a sea of tears that needed to overflow onto the page?  What if you could write about…all of this.

What would happen if you looked for a memoir on the bookstore shelf written by a mother who had a child with Down syndrome…but there were none, well, when you dug deeper, there were a few, but none quite as young or Canadian or as uniquely…you.  None with your story to tell.  Well then.

What if, scene by scene, chapter by chapter, you began to write your story down.  What if your story were to unfold before your very eyes as you devoured books on disability and memoir.  What if you read one hundred books a year, for three years in a row, mostly memoir – would you know how to write your own then?

What if you could receive an education by doing, by living, and by reading voraciously?  What would happen if you threw in every ounce of emotion you ever felt (leaving room for the emotions of the reader: pro tip), and let it simmer for a while, for a few years and then when you were in the exact right place in your life, which is to say, pregnant and planning to move, which is to say – right in the middle of it – you were to write that book, the story of receiving a prenatal diagnosis of Down syndrome with your daughter?

And during the process of writing a memoir, what if you were to learn something?  About storytelling, and time management, and publication, and copy editing, and narrative arc and plot and weaving in themes and cutting out crap.  What if you were to learn something that could be useful to others beyond the obvious of getting that book about Down syndrome out into the word?  What if you could find your voice.

What if, in the process of writing your memoir, you dreamed up a whole new career for yourself.  What would happen if writing became more than therapy, if it became your lifeblood?

Just what might happen if you decided to take writing seriously?  You couldn’t do that, could you.  That might be too selfish, play too directly into your deepest desires – or could you?  Well, if you keep writing, if you work hard at it, you might just face a whole lot of rejection, and then you might get published in a magazine or two, and you might see more of your name online and in print, and one day, (hopefully soon), you will see your book published, the one that took you three years to write.  And by that point you may very well think of yourself as a writer.

You might decide that while writing is writing and writing is everything, that money and making a living is important too.  You might become an editor on the side and of course, given your background and inclinations, you might consider furthering your qualifications and continuing your education to better be able to teach writing.  You might then consider getting your Master of Fine Arts in creative nonfiction, because you’ve always wanted to do your Masters, you love education, and while you’re waiting to do that, because your children are still growing up, why not travel the world with them?  You never know what could happen, so better plan that trip fast.  What if your travel agent should tragically pass away, would that thrust you into action?  It did for me.

And what would happen, if you decided that you love to write so much you’d like to attend a writer’s retreat?  Let me rephrase that with the truth.  You want to go to a writer’s retreat so that you can learn how to run your own.  Then what would happen if you just went ahead and ran your own writer’s retreat anyway?  Would anybody come?  Would anybody care?  In other words, if you build it, would they come?  And would you come into contact with more wonderful writers?  Would you have a chance to share new viewpoints and explore the world through the eyes of these dazzling women?  You would.

Then what would happen if you wanted to keep your retreat going.  If running a writer’s retreat became an important way to connect with others and use your skills as a teacher and a learner and a writer.  What would happen if you one day envisioned hosting retreats of your own, in your very own special place?

Then one day, what would happen if the world as you knew it fell apart.  If all sense of normalcy was erased.  Would you crumple to the floor and refuse to get up?  That would be understandable, if that’s where you needed to lie.  And some days you do.  You lay there motionless, watching the world pass you by.

But what if you held onto hope, and let the heartstring pull and listened hard to your own inner music?  Might you remember your retreat, and the second book you are going to write and the MFA program you got accepted into and the people who are counting on you?  Even if no one is counting on you, what would happen if you rooted for yourself?  Became your own biggest fan?  You’re #1 – go me!  What would happen if the cheers in your head became louder than all the noise of the outside world?  Not in denial, but in defiance and with reverence to all that you are and can be.

What if you thought about buying your family a pool with the money from all the cancelled plans of the summer, but then instead you thought, no, I want to buy a cottage. What if that would cost you everything you had, but would bring you closer to the people you loved?  To the nature and the water you worshipped?  To following your dreams and dancing to the tune of your heartstring.

Would you listen?

I think I just did.

 

Loss: Tending to the Rose Garden

Loss.  The idea came to me in hazy form one afternoon, but I had no time to jot down notes, to ease into the topic and now it’s five a.m. and while my body needs time to boot up, so too is my brain sluggish at this time of day.  I’m becoming accustomed to early mornings; I’ve been rising early all week and attempting to make the change both mentally and physically.  It’s the time I have, so I will use it well.  And that is the idea of this blog: that what has been lost, will be found, though often regained in some other form.  We are here to talk about roses.

For every loss I’ve experienced in my life there has been something I have gained from the experience.  I can’t say this is true for everyone, but for me, this has been the case.  The key to accepting my losses and moving forward to find the good has been perspective – finding the roses.  There is no doubt gaining perspective has cost me dearly.

There are the losses I’ve experienced lately:

The loss of time; I’ve learned to appreciate the time I do have and be more flexible.

The loss of routine; we have had to reconstruct our new normal and in the process are able to appreciate the relative ease of life before when casually picking up a few items from the grocery store was no big deal.

The loss of peace; we are working on nurturing each member of our family and ourselves.  On addressing each of our needs.

The loss of space; this one is a hard one for me.  I’m still working this one out.

In the past, I’ve dealt with the loss of a loved one.  While loss isn’t easy, and even when we do gain something from that loss, that does not mean to say the pain is diminished.  Since losing my maternal grandmother, I have found new ways to connect with her after she is gone.  Through cross-stitching – an art she taught me – and thinking of her, to sensing her spirit in the rabbit outside my window.  Though she is gone, and while her loss is real and felt, our relationship has not been broken, it has been transformed.

Loss is relative.  While it is true, we will all lose our lives eventually, we have today to gain in the meantime.  Focus on what you can do today.

I once thought I had lost the child I was expecting.  I experienced a loss of normalcy and I was devastated.  Down syndrome was not what I had planned.  But over time I was able to see I had more to gain than I had ever lost.  The power of that perceived loss transformed me in ways unimaginable, has pushed me to travel and see the world, to be more accepting of those around me and to become an advocate for those of differing abilities; to be a writer and become the person I was meant to be.  I can’t say I saw all that coming when I was pregnant though.  I can’t say I saw any of it coming.  I can’t promise you that your losses will bring you great things.  But hold it in your heart that it is possible that what you perceive as a loss today, may one day be your greatest blessing.

I’m thinking about loss after finishing listening to Still: A Memoir of Love, Loss, and Motherhood by Emma Hansen.  In Still, Emma Hansen relives for us the painful experience of losing her son Reid who is stillborn at 40 weeks.  A body, a life, so fully formed, to never experience the light of day or the feel of the breeze on his skin.  There is no reconciling this loss, but Emma does survive it.  She goes on to have another baby, after much difficulty, and then at two days old this second baby turns blue and is rushed to hospital.  If you want to know what happens keep reading, if not, and you think you’d like to read the book, skip to the * below.  Because of losing Reid the way she did (he was born with a true knot in his umbilical cord) Emma and her husband had felt helpless and they were determined to be prepared for this next baby.  They had taken an infant CPR course and once home from the hospital after giving birth, Emma had been watching her baby like a hawk.  She acknowledges that the experience of losing her first child enabled her to act quickly and save the life of her second.  The beauty of Everett’s big brother Reid looking out for him from above and beyond is not lost on me here.

*Oh, hello.  We’re back together.  Loss seems irreparable, and likely the pain will dwell with you for a long time, perhaps forever.  There is no promise that the pain will recede, just that there will be more to come; there will be an after.  There is no replacing the pain, just as there is no replacing the loss of a loved one, but over time, and perhaps with a shift of perspective, there will be beauty once more; there will be new hope and transformation.

Ariel and I finished reading The Secret Garden together last night.  As two forgotten children learn to care for a forbidden garden, they form a connection, with one another and nature, that nurtures their souls.  The act of being in nature heals their broken spirits and slowly their surly dispositions turn golden as the sun they play under, and as fair as the flowers they tend to.

There is a line that stuck with me, that reminded me of loss and perspective.

“Two things cannot be in one place. “Where you tend a rose, my lad, A thistle cannot grow.””

Where you tend a rose, a thistle cannot grow.  We must, deliberately then, sprout and give rise to those thoughts which bloom into delicate ornaments.  Those are the flowers we must tend to.  Pull out the weeds, and in times of difficulty, look for the rose buds to appear.  Someone or something may come along and cut the head off those roses – that’s life – and eventually, we know the last petal will fall and we will lay to rest alongside our roses, but while we are here, why not put everything we have into minding and making our gardens bloom?

As I stare out my window right now, I see buds on the trees.  Because I got up so early, I saw the sun rise into the cloudless blue sky I’m now witnessing, and into the promise of a new day.  And I smile, having tended to my roses, and feel grateful.

The Opposite of Loneliness

While tying my shoelaces up for a run, a thought popped into my head, I am not lonely.  I came to a shocking realization: I don’t experience loneliness anymore.  My family is around me 24/7, I don’t have time to feel lonely, even if I was.  It’s not that I’m particularly lonesome in my regular everyday life; my days are full and I keep good company, it was just an interesting observation that at a time when socializing is at a minimum, while there are those I miss, I am not forlorn.  My crew is solid.

To follow up on last week’s post, sorry to disappoint those readers who were actively looking for me to fall in poop (you know who you are and you know what karma is), I thought I would fall up (follow-up) with how the poop joke has played out this week.  Keep things light-hearted.

Elyse was on a virtual chat with her speech-pathologist reading sentences posted on the screen for both parties to see, when I arrived home.  While I was out running an errand, Dan reported Elyse was participating well in her session.  The minute I popped my head into the kitchen to check on things the read-aloud sentence that should have been, “Elyse went for a walk,” became, “Elyse fell in poop.”  The speech pathologist pressed their lips together and I did the same, but then as I’m much less professional, I burst out laughing.  Elyse smiled her cunning, knowing little smile and laughed at her clever joke.  She knows how to work a room, my girl.

That evening we were outside in the backyard playing as a family when Elyse tired of the game and went inside.  The first time she locked the rest of us out, I coaxed her to unlock the sliding door with a promise of fruit snacks.  Don’t judge me, it worked!  The second time, I was smart enough to grab my house keys for the front door.  After a stern talking to, I headed back outside.  We were quickly locked out again, and as we have rigged a makeshift shield to block the bottom of our fencing to protect our pup, the backyard gate can’t open so I had to hop our fence to make it to the front door.  I ended up hopping our fence three times.  Once Elyse helped herself to leftover Easter chocolate.  She held up the bag for me to see behind the locked door.  Another time, Penelope got trapped inside with Elyse.  Neither of them can open the sliding glass door, but Elyse can unlock it.  But that doesn’t help when she locks the screen door as well, because then I can’t access the glass sliding door even after she unlocks it. Oh lalalalala! (this is an expression Elyse’s EA uses in response to her comedics).  The third time Ariel had to use the bathroom, and so I made one last scramble over the fence and gave Elyse an even sterner talking to.

“This is not okay, Elyse.  Locking us out is dangerous.  You need to say sorry!  What do you say to mom?”

Looking somber and down at her toes, properly ashamed, finally having learned her lesson she said,

“Sorry, poopy.”

And I couldn’t not laugh.

And we laughed and we laughed and we hugged and I dragged her outside barefoot into the backyard and made her repeat to her dad what she had just said to me, because it was so well timed and unplanned, and it was just so damn smart.  Elyse has a wicked sense of humour and through her antics and one-liners her intelligence shines through.

Then she pulled another one over on us.  She tried the poop joke again, while chatting on the phone with her Educational Assistant, but nobody was biting.  (Oh lalalalala!)  Apres lunch, she shifted tactics.  We took an hour-long family forest walk, and upon returning Elyse took herself upstairs to her bedroom, tucked herself in, and promptly fell fast asleep.  She slept for three hours.  Being a seven-year old jokester is exhausting work.

I haven’t slid and fell in poop – yet – we’ve established.  In the past, I’ve certainly stepped in doggie doodoo, been rained on by a bird, and experienced the projectile range of a baby’s excretions while diaper changing, but I have yet to fall in poop.  Sorry to disappoint.  I did once, however, offer to close the open shed in our backyard on our way out the door to a family dinner.  The conversation from the front of our van went like this:

Me: “Shed’s open.”

Dan: “Oh.  I’m not closing it, called it.”

Me: “I got it!”  Flying out the car door.

In a mock sprint along the side of our house, I flew from the front driveway, onto the grass toward our back shed.  I was just picking up speed when I hit the grass.  One step, two steps…on the third step, my right foot gave way to the soft mud, which I slid through with all the grace of a baseball player sliding into Homeplate.  How had I not seen this coming?  The mud rode all the way up my leg, imprinted on my backside and onto my back.  I managed to avoid my hair.  Dan half hid his laughter while asking if I was okay.  I couldn’t breathe, I. Could. Not. Breathe.  Oh, lalalalala.  Laughter is the best medicine.

While I generally abstain from watching tv, in favour of reading books in the evening, lately I’ve made an exception to carve out some adult time.  And what have us adults been watching?  Comedians.  All I want to do right now is laugh.

I want to laugh and I want to be inspired.  Not in the cheesy, “you can do this!” kind of way, but in the life offering lessons and grace that awaken my writer senses.  On today’s forest walk, it was Penelope, my youngest, making me think.  She pointed to a puddle, “Are those piddows from the rain?”  But ‘piddows’ sounded more like ‘pillows’ than ‘puddles’ and so I thought about rain pillows, originally rain piddows – whatever you prefer – a wet and restful place to lay one’s head tucked into the earth.

The mispronunciation and misunderstanding of language provided by children is a source of never-ending entertainment.  My niece, around age six, once congratulated me on getting something right. She told me I “mailed it”.  My nephew, at two, called quesadillas “tasty ideas”.  These utterances came out over ten years ago, but we’re still talking about them, asking for ‘tasty ideas’ when what we really want is ‘quesadillas’ and congratulating each other with ‘mailed it’ instead of ‘nailed it’ and there has got to be a reason for that.  These memories make us smile and a smile’s just a guffaw away from something more…something uproarious and not at all unpleasant.  Something essential.

Elyse understands the value of comedy; she knows what is essential.  And she’s not afraid to let a punch line drop.  She says the thing you’re not supposed to say, but that everyone is thinking.  Her EA told me there was a student wearing overalls and some other fancy get up to school one day.  Though she’s supposed to be speaking in French at school, Elyse cut to the chase in her native tongue,

“Why are you dressed like a farmer?”

Everyone had been thinking it, her EA told me.  I think a farmer’s dress is practical and pretty snazzy, myself.

Elyse will be the one to stick her tongue out at strangers (much to our dismay), especially if it gets a laugh from the crew.  This morning it was replacing the lyrics to “move it, move it”, with “poopy, poopy” as she booty shakes her behind.  Ariel often raises her eyebrows and looks to Dan and I in response to Elyse’s pranks.  But it’s hard to make out our expressions – the harsh, chastising features that should be there, doling out parenting advice – with our faces turned away from view, shoulders hunched and bobbing, eyes squinting with tears, mouths stifling until we burst.  Let it all out.

This is the opposite of loneliness.

Not Coronavirus: What? Syndrome

Author’s Note: I wrote this as mounting tensions over Covid-19 were rising.  I don’t want to appear insensitive or unaware of the current pandemic situation, but when life goes on – and regular life will go on – there will be other things to discuss and what follows is part of a dialogue from a conversation I’d like to have.  Grab a chair and lend me your ear.

Why is it that certain service providers and businesses act like people with disabilities don’t exist?

If my daughter with Down syndrome wants to go to camp, and she needs some support to be there, whose responsibility is it to arrange and pay for that support?  Without getting into the legalities, who do you think should have to do this?  What feels right to you?

Written into the Ontario Human Rights Code under The Ontario Human Rights Commission:

“…service providers have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.  Accommodation is necessary to ensure that people with disabilities have equal opportunities, access and benefits.  Employment, housing, services and facilities should be designed inclusively and must be adapted to accommodate the needs of a person with a disability in a way that promotes integration and full participation.”

I am no legal expert, but when I read that, I think, ya, businesses are supposed to be designed in a way that anticipates the range of human existence.  The needs of people with Down syndrome should not be an afterthought.

I am no legal expert, and that is why I’m talking to a lawyer – who is – and will hopefully be able to give me a definitive answer to my camp question, regarding support, but I know what feels right and what doesn’t.  And being told I would have to pay for a support person to accompany my daughter to camp definitely doesn’t feel right; it feels like a slap to the face.  Like the person making the statement doesn’t know my daughter at all (because they don’t).  Like the person is making assumptions and generalizations without asking any questions (because they are).  Like society doesn’t care about inclusion.  Like inclusion is a myth.  There’s money I can access to pay for this support person, but then there will of course be less money for other more essential services, like speech therapy for example; but this is about more than money.  My question isn’t just about who pays.  The costs are much higher than that.

For a child with disabilities to be able to participate in a camp setting or community program, I view putting all of the onus on parents to provide that support as a lousy thing to do.  If you send your typical kid to rock climbing camp, you aren’t expected to bring your own ropes and harnesses, which is what it takes to be able to participate in rock climbing camp.  If we say we are an inclusive society, or if we truly want to be (which we should) then camps should hire extra staff to help meet the needs of kids with varying abilities.  The best part of this approach is that every camper would benefit, and this my friends, is called ‘Universal Design’.

When I approach a new program for Elyse, I want to know what the business is doing on their end to accommodate my child, but I am also sure to ask what can I do?  I don’t mind meeting halfway; I view any setting between a child and a care provider as a partnership, which means both sides have responsibilities.  My responsibility is to help that setting get to know my child; their responsibility is to do the rest.  Elyse does need some degree of support; but it’s all in the way an organization goes about offering it (or not).

Here’s a great example of a partnership that worked.  Before the start of summer gymnastics camp, we signed Elyse up for a regular gymnastics class session so that she knew the staff, and they knew her.  We then enrolled her in that same gymnastics club’s summer camp during a week that was less busy, because we had that flexibility, and in return, the club matched Elyse with a coach whose style and personality jived.  The club was flexible in making sure Elyse’s needs were met without impacting the group dynamics or causing undue harm or hardship.  She did not need a one-on-one support person, but what she did need was a mature coach and a group effort and consensus to keep an extra eye on her.  The coaches did this because they are doing their very best to uphold the values of inclusion and the principles that when we support our most vulnerable and we are a community that looks after each other, then everyone benefits because everyone belongs.

Likewise, our community swim program has been phenomenal.  Year after year, I contact them in regard to registration and mention that Elyse has Down syndrome.  I then discuss Elyse’s specific needs, because – hello – not all people with Down syndrome are the same!  I explain her needs, am flexibly on timing and then Halton Hills recreational staff make sure Elyse either has one-on-one or that there is a volunteer extra staff available to help her in a group setting should she need it.  This has been at no extra cost to us.  This inclusive set up makes us feel welcome and valued in our community.

But not every community program is so wonderful and not every camp knows Elyse and wants to help us out.  The consensus across Ontario is not always a ‘we’, but often still an ‘us vs. them’ mentality.  Friends of ours have mentioned they were turned away from daycares, for example, because their child has Down syndrome.  Why is this happening?  It shouldn’t be.

I now have the correct label for this phenomenon.  I wrote about discrimination in another recent blog post, but that’s not exactly what this is.  The proper term is ‘ableism’ and ‘ableist attitudes’.

From the Ontario Human Rights Commission (OHRC):

“Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.  Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.  It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities.”

This, all of this, yes.  Unfortunately, though steps have been taken to try and help bridge the gap, there exists a chasm between the abled and the disabled; the gaping hole that remains is in our attitudes towards those with disabilities.  Sure, throw some money at us – the families who have children with disabilities – we will take it, but it is outdated attitudes and stereotypes that are weighing on us heavily and truly holding our children back.

Expectations, and the expectations we hold for individuals, matter.  There is a slew of research on the impacts of our expectations in regard to outcome and performance, but what you need to know is this:  when we believe that someone can do better, they do better.  When we set our expectations high, individuals tend to perform better.  When we set people with Down syndrome and their families up for success, by putting supports in place that do not cause undue hardship to families rather than just worrying about businesses, then society wins.

Do I want to see a business collapse under the weight of supporting my child?  No.  But that is so far from the case, regardless.  Do I want to see a service, such as a camp, act surprised when I come knocking at their door with my child with Down syndrome?  1 in 800 Canadians are born with Down syndrome – why should anyone be surprised?

Again, from the OHRC:

“Ableist attitudes are often based on the view that disability is an “anomaly to normalcy,” rather than an inherent and expected variation in the human condition.”

People with Down syndrome have always existed.  In every race, gender, socio-economic status and across time.  For those who haven’t already, it is time for businesses and service providers to wake up and plan for the diversity of the children who will arrive at their doorsteps.  Do not put undue hardship on families.

Maybe this is all too impersonal.  Too preachy and utopian.  I don’t think so.  I know we can do better.

And here’s why we should.

Emily and I are giving a talk in a school.  The kids absolutely love her and want to be around her.  Emily is a former Special Olympian rhythmic gymnast with a sparkle in her bright blue eyes and a wit to match.  After our talk is over, a kindergarten class fills the gym and the teacher pulls out a parachute.  While I’m busy chatting, Emily, without missing a beat, joins in with the Kindergartens, shaking and lifting the parachute much to their delight.

On our drive home, I ask her why she did that – joined in at the parachute.

“Because,” she said, “I like to do that, and it’s been a while.”

How many adults do the things they really want to do when it comes to play?  I aspire to be that person, but I don’t always succeed.

There are so many lessons to learn in the breadth of humanity.  We need to be bringing more people in, hearing what they have to say, rather than keeping people out and turning them away.  I have learned more from the experience of having my daughter Elyse than from any education a higher institution could provide.  Some things – love, for example – cannot be measured or quantified or taught.  Some things are mostly felt and there are certainly those individuals more equipped to teach us.

When it comes to supporting each other, building inclusive communities, and the attitudes that pervade, businesses and service providers shouldn’t be worrying about whether they’ve done enough to meet the status quo or minimum standards (though they should make sure they have done at least that) – but whether they can do more.