A Great Irony

“In order to accept other people’s disabilities and to help them grow, it was fundamental for me to accept my own.” ~Jean Vanier

Those who know me may find it hard to believe there was ever a time when I was anything less than sympathetic to the cause of the rights and inherent value of people with Down syndrome. But the truth is harder to hold, and I sit down with it now, grasping at its blurry edges, as the full picture comes into focus.

There was a time when I wanted nothing to do with people with disabilities. I spend many hours volunteering in my youth: caring for babies and children – not surprising; then with the elderly and those with mental illness – but I found that too depressing for my soaring spirits; with the downtrodden and hungry, which of course filled me with admiration for my own good deeds; with the illiterate, for I’ve always been hungry to teach; with animals, because before I knew I loved children and would teach, I had a tenderness for animals and a need to care for them. But never, not once, did I choose to volunteer with those with disabilities.

There’s an ugly memory that haunts me from when I was around nine years old. My best friend’s mom worked at the local children’s centre for disability and our hometown hockey team was doing a meet and greet for these poor disabled children. For – it was clear – that was how they were viewed: poor and disabled. When my friend invited me, I wasn’t sure I wanted to go along, but I did anyway. Some of what I saw scared me. Children in wheelchairs with twisted limbs I didn’t understand. Children incoherent and incomplete and in pain. I could see despair on their faces and I looked away. What if this form of anguish impacted me? What if one day I found myself in a wheelchair or without my wits? This was supposed to be a celebration, but the whole set up, however well meaning, felt fake to me, a sham. How could one possibly be happy without all the benefits bestowed upon the fully abled? I didn’t sense genuine happiness from these children, and I left wishing to distance myself from that world as far away as I could. And so I never once volunteered with people with disabilities. Never. Once. Until…

Over time, you could say my outlook matured. I did, after all, play with the little boy Jeremy at my school who had Down syndrome. My best friend and I loved this curious creature whom we played with at recess when it suit us. One day he fell off the play structure and hurt himself. While woodchips were plastered to his face by his snot and tears, he reached his arms towards me and I hoisted him up. When he wrapped his limbs around me like a baby koala I held him tightly while my friend ran to get the teacher for help.

I eventually coached gymnastics to kids of all abilities, including kids with Down syndrome, but somewhere, a small part of me knew I had kept myself at a safe distance from that sad community I once bore witness to. A community I never wanted to, hadn’t asked, to be a part of.

The birth of our second daughter changed everything. Once never, until…

Until I took the time to get to know people with Down syndrome, I would never fully understand what they had to offer.

Now, when I volunteer my time speaking to students in schools, often alongside my friend Emily who has Down syndrome, I make sure to tell them the story of my own mistakes so they know how far I’ve come. That it is possible to understand something, like what is right, in your head, but not truly feel it in your heart.

The story I tell them goes something like this:
“When I was an elementary school student like you, there was a little boy at my school who we’ll call Jeremy. Jeremy’s sister was my age and Jeremy was a few years younger than us. Jeremy was a little boy with Down syndrome. My friends and I used to play with him sometimes at recess.
One school day, we were having a school-wide track meet. Everyone in the school got to run in a few races. We had a huge playground at my elementary school with a big open grassy field, so that is where we would be running our races. When my teacher told me, and the other kids, to stand at the start line, I was nervous. This was going to be my first running race ever. I had to run 100 meters.”

At this point, I get the kids to start the race, “On your marks, get set, GO!!!”

“When the teacher yelled go, I ran as fast as I could around the field. I ran so fast that I won the race.
I was still out of breath when I was called back over to the start line. It was already time for my next race. This time, I had to run a distance twice as far.”

I ask the kids to tell me how far that would be (good, they’re paying attention), then we start the second race together, “On your marks, get set, GO!!!”

“I’m running, running, running. I used the same strategy as the first race, which was to run as fast as I could, but this time I could feel that there were kids behind me. I used every last bit of energy I had. I pushed myself to get to the finish line and I did it! I won again for the second time that day!” The kids all cheer.

“Kids I didn’t even know were coming up to me and patting me on the back. I was feeling pretty great.
But the next part of the story is where things get tricky. I was soon feeling not so great.
Two of my best friends were waiting for me at the finish line. One of them stuck a water bottle in my face, which I gratefully accepted and guzzled the whole thing down. All the water was gone. The next thing I knew, my two best friends were giggling. I started to laugh too, until I realized I wasn’t in on the joke. And that they were laughing at me.

“That’s Jeremy’s water bottle!” my friend said. If you remember, Jeremy was the little boy with Down syndrome.

“Argh, you guys!” I threw Jeremy’s water bottle to the ground and wiped my mouth like I had been poisoned. My friends ran away, and I was left standing there, embarrassed and angry. Poor Jeremy. If he was feeling thirsty after his race, he would have no water to drink, but I didn’t think about that.”

As I finished telling this story to a large group of students today (in French, actually!), all the kids in the room fell silent, letting the weight of that final pronouncement set in. The next part I love, because I get to go back and fix the past, or at least make amends by helping to improve the future. I ask the kids why they think I threw Jeremy’s water bottle and how they would feel if someone did that to them? Then I ask them the most important question of all: what could I have done differently? Every time I give this talk the answers blow me away. Children understand about kindness; how to give it and take it away. They have knowledge of that power and it is our job to teach them to use it wisely.

We spend time talking about kindess and the true mark of greatness. I remind the students I may have won two races that day, and while some would see that as a mark of greatness, where I still had a lot to learn was in how to be a friend to a person who may not be seen.

I tell students I have met people with Down syndrome from around the world, by traveling to the World Down Syndrome Congress in India and Scotland, and you know what I’ve learned? That people with Down syndrome want to be treated like everybody else: with love, respect and kindness.

That when there is an absence of those things, and a lack of connection, then there is anguish and there is pain for all involved. (but I don’t say that last part to the kids, I don’t want to scare them!)

The great irony came at the end of today’s talk, which I happened to be giving at my own daughters’ school. As I finished telling the story of throwing Jeremy’s water bottle to the ground, my daughter Elyse, who has Down syndrome, sauntered across the room and came to sit on my lap. She reached for my water bottle, which stood on the table behind me, and as I looked on at my friend Emily performing a dazzling ribbon routine on the screen, one of her Olympic performances we were showing the kids, Elyse took a big messy slurp out of my water bottle. She didn’t throw it to the ground or drink all the water. She just looked up at me with her big brown eyes, through her wire-rimmed frames and said, “Thank you, mommy.”
You’re welcome my sweet girl. Thank you.

How To Advocate Like A Motherf*#%er

Tips for parents looking to advocate on behalf of their child with different abilities at school.

“Write like a Motherfucker” is a Cheryl Strayed reference, the author of Wild and Tiny Beautiful Things. You can read the story of write like a motherfucker that inspired my title here, but for the time being, let’s focus on advocating.

First of all, do you see what I did up there? I didn’t write out the word “motherfucker” in the title of my blog, because I’m just not comfortable doing that. That is my first piece of advice: don’t plan on doing something you aren’t comfortable with, such as planning a talk around the details of your child’s genetic condition, unless you are clear and comfortable on those details and the telling serves a purpose. E.g. When I talk about Down syndrome, I don’t go further into the chromosome discussion than that they’re made up DNA, which contains our genes (which make you who you are). I don’t talk about how genes code for proteins, and how proteins perform key functions in our bodies because really, where am I going to take it from there?

The flip side to presenting the uncomfortable then is to stick with what you know. And what you know best, what everyone knows best, is their own story. Tell the story of how your child came to be; how you felt and dealt with those feelings, what you learned, and how you feel now. Maybe that’s too personal. Maybe you’d rather stick with the facts.

Another idea: stick with the facts. If you want to say what Down syndrome is, for example, go for it! Three copies of the twenty-first chromosome. A natural chromosomal arrangement. John Langdon Down was the physician who first grouped and identified the traits commonly identified in people with Down syndrome. One in 800 babies in Canada is born with Down syndrome. This is all interesting information and you should definitely tell it. What makes it even MORE interesting is if you can add in a personal story that’s relate-able and age-appropriate. For example, in speaking to elementary students, I talk about the time in grade 4 when I won two running races in a row, and then guzzled down a random water bottle that my friends handed to me that actually belonged to a little boy with Down syndrome. When my friends (who thought they were being hilarious) told me who the water bottle belonged to, I threw it to the ground and wiped my lips in disgust. I ask the students questions about why they think I did this (is Down syndrome contagious – no!) and what they think I could have done differently? This story segue ways into talking about choosing kind. I also share a book that represents a beautiful friendship between a little boy and a little girl named Isabelle who like to play together, because kids with Down syndrome like to play the same games any kid does.

Which brings me to my next idea. If you’re lacking stories of your own, or just don’t feel comfortable sharing your personal recollections, why not share someone else’s story? My friend Isabelle, by Eliza Woloson, is the book I was referring to, and a quick google search will reveal several others. Books are great starting points for initiating key discussions with students. With older students, a meaningful quotation is a nice touch. I used this one from Wonder, by R.J Palacio, “Greatness lies not in being strong, but in the right using of that strength. He is the greatest whose strength carries up the most hearts by the attraction of his own.” This quotation fit in well with my story, maybe there’s one that fits in well with yours or touches on an idea you want to explore? Also, scour professional websites. Lick them clean for good ideas. The Canadian Down Syndrome Society’s website is full of brochures and helpful information about Down syndrome. That was the first place I went to as a new parent and the best source to gather concrete facts for my presentations to adults and children alike.

If you’re talking with students, come prepared with questions of your own. Kids love to get involved in what you are presenting and to share what they already know.

Create a PowerPoint that includes beautiful images of your child. Eighty percent of us are visual learners – capitalize on that. Then, whatever it is you decide to say that accompanies those images, it may be best to write it down. My husband, who presents content for a living, is comfortable speaking off the cuff. He uses point form notes when presenting to an audience and elaborates from there. I, on the other hand, prefer to have a detailed script in case I need it (because I will). I might not, but it gives me comfort that if I blank in front of an audience I have something to fall back on.

The very first time I spoke to anyone about our story, period, I read the newspaper article I had written. That was it. The subject of my child with Down syndrome was still too fresh and emotionally charged for me to trust myself with anything other than words I had written down. Keep it simple, and small gentle steps as needed. Whatever it is you choose to share, you will make an impact. When we open ourselves up, making ourselves vulnerable to others, in this way they come to trust us and what we have to say. I always get the most attentive, still audience, when I’m sharing a personal story, but that may also be because I love me a good personal story. What do you love, and how can that translate into advocacy?

Maybe you aren’t comfortable with speaking to your child’s class at all, and I should point out that is TOTALLY OKAY. There are many other ways to advocate, and get your child’s class the information they need. Invite a self-advocate, such as a person with Down syndrome that you know has a reputation as a speaker, to come and talk about their life. Share books, videos and other resources with the classroom teacher, such as the teacher guide put out by the Canadian Down Syndrome Society. Inform the school/teacher about any important events related to your child’s diagnosis, i.e. community fundraising walks to raise awareness (Go21 in the Ds community), or a special day or month, such as World Down Syndrome Day (March 21) or International day of persons with disabilities (December 3). Encourage your school to participate in the WDSD school contest, if you live in Halton, or equivalent in your area (and if there isn’t a contest, maybe your association could start one and you could be involved in that!) Write a letter to your child’s class that includes helpful information, or a note to the parents.

Remember that advocacy isn’t about one special day, but something every parent does for their child on an ongoing basis. I have found positive, regular communication and exchanges with my daughter’s school to be one of the most effective forms of advocacy. When others see that you care, they’re more likely to care too.

Happy advocating, and remember, be true to you. Don’t advocate like a motherfucker unless you really want to.

*A huge thank you to a fellow parent and friend who sent me this question of how best to advocate, which in turn prompted this post.

The Original Four

Whoever said families are supposed to be useful was wrong. Families stick together. Sure. Blood is thicker than water. Whatever. But families as a useful entity, as helpful to the individual? I don’t buy it. I would argue they can do as much damage as good. Let me explain. The individual usually ends up with their first family because they were born that way. Luck of the draw. Nothing more than an exaggerated case of finders keepers, losers weepers. I found you first. I get to keep you. The members of the family may have no more in common than the roof they share, and the gene pool in the backyard.

I visited home to spend time with my original family unit, with the parents who found me first, and lo and behold! My brother happened to be down with three of his four kids. It is extremely rare and unusual for my brother and me to find ourselves at my parents’ house, without our spouses, at the exact same time. Yet that’s precisely what happened. The stars aligned perfectly for a meeting of the minds of the “original members only”.

With six cousins finally fast asleep upstairs, I walked into the family room of my childhood home, the roof that has remained standing over my head for thirty-odd years, and I assessed the situation. Not much has changed. The Leaf game is still on the TV and there sat my mom, my dad, and my brother. “It’s the original four!” I let out. Not particularly funny, but the comment prompted the tiniest crack of a smile on my brother’s face.

If there’s one particular area in which I do find my family useful, it’s in making me laugh.

I asked my brother about his summer plans, and he explained they’re planning a family trip to Atlantic Canada. This got the original four fired up. Advice! Clearly this admission of plans was a cry for our helpful tips and advice.

“Dan and I took the kids on a summer trip there two years ago!” I exclaimed.

“Mom and I were there,” dad said with the zeal of getting a good conversation going.
The conversation shifted to the drive down. “What was the name of that one town we stayed in, MJ?”
“St. John,” my mom said without missing a beat.
“Right, well, you don’t want to stay in Dartmouth,” my dad warned.
My brother and I gave each other the knowing look of siblings, cheeks puffed out, holding our breath for what came next,
“Dartmouth is like Waterdown, it’s the armpit of the big city, really.”
And that did it. I met my brother’s eyes again, and we exploded with laughter.
“What!?”

That’s the thing about family. You’re okay as long as you can laugh together.

“Waterdown is the armpit of Burlington,” dad continued on, undeterred. More cackles of laughter.
Did I mention my brother lives in Waterdown?

“What was the name of that town again, MJ?” My brother and I can’t breathe. My mom rolls her eyes.

Let’s take a moment to pause and ponder here. How is my dad insulting the town where my brother (and many other good Canadians) live supposed to be helping my brother plan his trip? And why are my brother and I finding our dad’s innocent comments so incredibly funny?
“There are so many great beaches,” I offer, catching my breath, trying to brighten the subject and illuminate the Atlantic experience.
“Oh, except that one beach…” I remember aloud. “There was like a million jelly fish! So many the kids couldn’t even swim, and we were so unbearably hot!”

Dad: “Check out the Confederation Bridge. It’s incredibly long…actually, I remember looking down when we drove across it and it kinda makes you feel sick.”

Me: “Oh! You should stay in a cottage through Airbnb. Did I tell you about the cottage we stayed in? It was great, but we backed right into the woods a few kilometers off the road and the bugs were terrible. Actually, Ariel freaked out because there were giant mosquitoes.” My mom nods her head, confirming the giant mosquitoes claim. “Ariel was screaming hysterically in the back of the car because a few mosquitoes got in, and we couldn’t calm her down. The situation was ridiculous to the point of hilarity.” My brother looks at me. He looks at my mom and dad.
“Sound great, you guys. I don’t even think I want to go anymore.”
Hey, don’t mention it. What else is family good for? We certainly aren’t meant to be useful, that much is obvious.

My dad launches into a new set of instructions, complete with directions on where not to go, and I grab a pillow and bury my face in it, doubled over. If nothing else, under all the roofs I could have landed, the finders who could have found me, I drew the short stick, and I guess that makes me pretty lucky.

Be Kind, or else

I’m going to write a blog about kindness on a day when I’m not feeling particularly kind. I’m not feeling particularly unkind, just kind of blah. You know when you have to face down something difficult? It can be like standing at the top of a roaring waterfall with no way to fight back against the current. The jump is inevitable, you have to do it. It’s a long ways down, a far distance to go before the splash and the security of knowing you will resurface. I woke up with the water rushing all around me, sloshing in my head and ears, dragging me to the crest of the descent. I went over belly-up, kicking and screaming – or at least that’s how it felt getting going this morning. The cascade wasn’t pretty. Anyone who has kids and sees March break coming knows what I’m talking about.

So let me get to the point. Because we’re here for only a short while, and we’re going to talk about kindness today, dammit. Spoiler alert: I will touch on the ending of R.J. Palcio’s book Wonder (if you haven’t read it, and don’t want me to ruin the ending, this is your cue to leave…wait, come back! It’s not in a blogger’s best interest to tell their readers to leave. Just skip over the next two paragraphs, and quit whining about it already. Forget that. Be kind. No name-calling.)

The book Wonder, which I would argue is written for children and parents alike, is the story of Auggie Pullman, an intelligent boy with severe facial deformities and medical concerns who is about to attend middle school for the first time. The issues of acceptance and kindness are central to the book. At the end-of-year graduation ceremony, the school principal reminds his students in a speech, “Courage, Kindness, Friendship, Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness.”

He goes on to remark:
“Greatness lies not in being strong, but in the right using of strength…He is the greatest whose strength carries up the most hearts…He is the greatest whose strength carries up the most hearts by the attraction of his own.” The principal is of course referring to the boy who showed true strength and courage throughout the entire school year, just by showing up, in the face of ignorance.

He is the greatest whose strength carries up the most hearts by the attraction of his own. Wow, that’s powerful. And to me, that evokes kindness, compassion, empathy.
This way of being reminds me of a great philosopher, visionary, and disability-rights activist, Jean Vanier, who writes, “theirs is not a life centered on the mind. So it is that the people with intellectual disabilities led me from a serious world into a world of celebration, presence, and laughter: the world of the heart.” He describes the relationship between the one who is healed and the one who is healing as constantly changing places. Everyone has something to offer, and we all have times of need. In his book Becoming Human, Vanier writes about our fears of those who are different from us, “…because we are not clear about what it means to be human…we have disregarded the heart.”

Kindness, or at least the form of kindness where we must appear vulnerable in front of the cool kids to do the right thing, isn’t a weakness then, it’s a strength. A strength of the heart. Allowing ourselves to be vulnerable by showcasing and accepting our strengths, as well as our weaknesses, is what makes us human.

I love the tie in with disability, because having a disability or being viewed as disabled is so commonly perceived as a weakness in our society. But we must also accept and acknowledge that it is a strength. Differences can be perceived as weaknesses or they can be perceived as strengths. No matter how you spin it, it’s important to point out that what we perceive, or society perceives, as our greatest weakness can in fact be our greatest strength.

I’m getting derailed here. I’m supposed to be talking about kindness, and I’m talking a whole lot about strength. I guess that’s because what I’m getting at is that kindness, and our great capacity for compassion and to feel empathy for another, is a huge strength, maybe the greatest one we have.

Kindness is contagious, and it helps us to build connections. I experienced this when I responded in kind to the caring words that came my way when I started my new blog. I felt compelled to reach out to another writer and compliment their writing. The compliment was genuine, but the feelings of kindness that had first been directed toward me helped draw it out.

Kindness is hard-wired in our DNA and essential to our humanity (even if it’s hard to admit it when you’re having a grumpy day), but you still have to choose to be kind. “When given the choice between being right or being kind, choose kind.” Another quotation in Wonder, this one from Dr. Wayne Dyer.

And if you’re going to choose kind, that kindness has to start with being kind to oneself. For me, that kindness looks like not berating myself for reading a book when I should be writing, or taking too long to start writing, or producing writing that isn’t good enough (the theme of this morning is writing challenges). In truth, I panicked slightly once I realized the kids were all out of the house, and so I better get to work NOW, TIME is running out! But where to focus, I have no idea WHAT I’M DOING (though I have lots of things to do), until I took a deep breath. Inhale. Exhale. I walked the dog. I made myself two fried eggs and a piece of cinnamon honey toast so that my belly felt warm and full. I drank my tea. Then I patted myself gently on the back, and said, “it’s okay, take your time. You’ll come around.” I read a book, Heroes in My Head by Judy Rebick, for half an hour. Finally, without judgement, I sat down and I wrote a blog. The blog in front of you. Part of me is still kicking and screaming into the mist, stuck in that downwards flow, but mostly I’m one with my surroundings now. One with the beauty of nature around me. With kindness: that’s where it all starts.

In the Face of Failure

I have a lot of good things going for me right now: a new website and blog I’m proud of, speaking engagements, a finished manuscript ready for publication, national conference presenter, a roof over my head, and a husband, family and friends who love me.

Maybe I need to remind myself of these great things in the face of failure, in the full throes and embodiment of it.
At exactly 7:28 p.m., on the last day of February, I looked on from my folding chair in the spectator aisle as my daughter and her friend high-fived their Taekwondo teacher, Master K. From the corner of my vision, I saw my phone light up in my purse. I reached for it casually, picking it up and scanning the notification. As the girls got their boots on, and kids shuffled past me in a flurry of frenetic activity, I hung on to hope, and immediately opened the email that had arrived. The email I’ve been waiting months to receive.

UBC sent me the following message:

“Dear Respected Applicant,
We regret to inform you…” my heart stopped there. I slouched down in my chair, and re-read the message. I didn’t get in to the Master’s program I so desired.
“…almost 300 applications. The caliber of the work was high, the rankings were very competitive, faculty had to make some difficult decisions.”
Wrap it in a bow, make it look pretty, then sugar coat it any way you want. I didn’t get in. My heart was set on it, and it didn’t happen.

What about the people who wrote letters for me? MG Vassanji, a highly respected, award-winning author; my sister-in-law, a creative writing professor in charge of Master’s admissions in her own right; my good friend, a college prof and successful copywriter – have I let them all down?
And why? Why didn’t I get in? Is it because the competition was stiff? Because I used a relative as a reference? Because I haven’t yet published in a serious journal or won any awards? Because I submitted my first earnest attempts at fiction alongside my polished non-fiction excerpts, or they didn’t like my thesis project, or I didn’t explain myself well? Because my writing’s not good enough? Because I’m not good enough? I don’t believe in that last one. And you shouldn’t ever either.

There are a host of other reasons why I may not have gotten in. Maybe I put my name in the wrong box, or out of order.
To this day, I have my suspicions I didn’t get early acceptance into the teacher’s college consecutive education program after high school on the basis that I mixed up my first and last names in the boxes. What is your surname versus your given name? Oops. I couldn’t follow the instructions, and so they never even looked at the rest of my application. Or so I’ve imagined. But you know what? We’ll never know. And I’ll never know why I didn’t get into UBC’s program this time, either. And you know what else? It doesn’t matter.

At the risk of sounding grandiose and self-important, I trust there will be other great things coming my way, that the universe has a plan for me, and a way of working itself out.
If I had gotten into that consecutive education program out of high school, I would have never gone to Western, and never met my future husband, the love of my life, and experienced all that followed.

You know what else? After my failure to get early acceptance into teacher’s college, I dedicated the rest of my university years to making sure I would get in the next time. I worked even harder to that end. And guess what? That hard work paid off. I applied to six teacher’s colleges, including driving all the way from London to Ottawa with a friend to take a French competency test as part of one application. Then, during that highly competitive double cohort year, I got in. I got accepted into every single one.
When the timing is right, and if it’s what I’m truly meant to be doing with my life, I’m confident I will get into a Master’s of Fine Arts program, too. The same can be said for publishing my first book, winning a contest or receiving some form of recognition as a writer.

As we drove home, I asked the two seven-year-olds in the car what you should do if you fail. They both pipped up, “Try again! You have to keep going! Never give up! That’s called perseverance.” I told them they were wise beyond their years. They didn’t understand what that meant, but that’s beside the point.
The point is, I don’t pretend to understand the mysteries of the universe, but I have faith and I will persist. Hell, you can bet I’m going to work even harder now, and whether I eventually get in or not, it will have been worth it.

Perhaps it’s foolish to announce my failure to be accepted into a prestigious writing program at the moment I’ve officially declared myself as a writer to the world. Or maybe, just maybe, it makes me human.