Category: Advocacy & Down syndrome

I was going to write a blog about blogging, and that blog may or may not have included the list of ideas for blog posts this week running through my head. One such tentative post idea I titled Tri-ing. That title surfaced in my stream of consciousness on Saturday morning as I suffered through my swim. I’ve thought about writing a post about swim training since the elderly man with trim features, who’s always at the pool, said to me, “Wow. You must have A LOT of energy.” I wasn’t sure how to take that: was it a compliment, that my swimming looks robust, full of life? Or a disparaging remark, along the lines of, “I don’t know HOW you swim that many laps in such poor form, being so inefficient.” I’ve chosen to take it as a compliment, and so we can move on.

Then came the idea during lunch out with a friend. This friend is also a cherished colleague and skilled copy editor. She has copy edited my manuscript and will be working with me on a few other projects as well as we grow our careers together, and she brought up “segue”, which I incorrectly spelled “segue way” in another blog post, despite having looked it up. I hadn’t outright asked for her input, but I was more than glad that she told me. Prior to the lunch, my friend had conferred with her husband before bringing the misspelling up with me. Her husband told her explicitly NOT to bring it up with me over lunch, but it was eating away at her. He made her promise. We had a good laugh over that. Then I told her I might have to write a blog post called “segue”, and she shook her head vehemently, and we laughed again, “oh no, no, no!” she said waving her hands, shaking her head in an emphatic no. My friend wouldn’t appreciate the attention, so I won’t do that. Which is a perfect segue into this next bit. The master idea that has floated to the top of this week’s pile (because that IS how you write a blog post!) The role of stories in our life, and a project, Common Threads.

When I say “Common Threads” I want you to think about chromosomes, which are threadlike structures, and the common humanity that unites us all. In a nut shell, Common Threads is a collaborative project, a place for families and individuals with Down syndrome to share their stories that I’ve started through my website. Our stories, and the stories we tell ourselves in our head, define us. When we know each other’s stories, we’re much more likely to feel compassion and understanding for each other. As author/photographer Peter Forbes puts it, “Stories create community, enable us to see through the eyes of other people, and open us to the claims of others.”
When I found out I was carrying a child with Down syndrome, it was words and stories that would mend my heart. It was memoir after memoir that allowed me to process my grief over a loss of normalcy, that showed me I wasn’t alone, and where I was able to challenge my own misperceptions and preconceived notions. I was on a journey: adrift in the sea of my mind, paddling furiously to the island of my heart. “So it is,” wrote Jean Vanier, “that people with intellectual disabilities led me from a serious world into a world of celebration, presence, and laughter: the world of the heart.” Words and stories were the current that took me there, that deepened my understanding of the importance each individual brings to the world.

In truth, today’s blog is mostly a plug for Common Threads! If you have a child with Down syndrome, or YOU have Down syndrome or a sibling or other family member with Down syndrome, and you are Canadian, I hope you will consider submitting your story here. Anyone and everyone can subscribe to Common Threads, to read the stories, or if you don’t want to know when new stories are posted, just pop your head in every once in a while and see what’s going on. At the very least, I hope you will read the stories, which you will see posted in the coming weeks and months, and share them with a friend who may need to read them. In case you haven’t already clicked on one of the casually inserted links above, you can read more about the Common Threads project here.

“There is no greater power on this earth than story,” wrote author Libba Bray. What’s yours?

“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.

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.

There’s an interesting phenomenon that occurs when I walk around with my kids in public. There’s oohing and ahhing, and often a well-meaning comment. When I’m with Elyse, the comment is often, “Aww, she’s so cute.” I’ve received the same comment walking around with our toddler Penelope, but she’s more likely to receive a comment on her behaviour or her intellect, “She’s so smart!” or, “Look how good she is.” Ariel, our eldest, is less likely to elicit comments now that she’s getting older, other than what a great big sister she is.

While I appreciate the good intentions, it’s come to my attention that cute isn’t always a good thing. Cute can be downright condescending and dismissive. Reductive and infantilizing.

Two years ago, I was to go a talk with a good friend of mine to a group of college students. While we were standing in the hall waiting to give our presentation, a few young women happened to pass us by. In truth, we were lost, looking around, and waiting for my professor friend to come pick us up. It was at that moment a group of young women passed us, and one of them made a comment about my friend.

“Aww,” she said to her friend, “She’s so cute.”

My friend is 35 years old, and she has Down syndrome.

The young woman caught me in a moment of surprise. I said nothing. My friend looked unperturbed. I mentioned the incident to my professor friend who urged me to share the experience with the class, which I did. Did they see how wrong that was, how demeaning, to be labelled as “cute” by a complete stranger?

You could argue with me there are worse names to be called, and I won’t disagree with you, however there are ways to acknowledge someone that don’t rob them of their dignity; of their adult-ness. Do we take the needs and wants of someone who we label “cute” seriously? This is the same false reasoning and notion that kept/keeps women oppressed. Women were thought to be too delicate, too fragile. Best for them to stay home, and mind the children. A friend told me a man at her work apologized for swearing in front of her – same idea. I’m not saying I want people swearing at me, but why have two sets of standards? Would that woman have called another typical woman she didn’t know “cute”. Highly doubtful.

“Cute” is a stereotype. It’s a label that contributes to keeping the voice of those with Down syndrome small.

It’s true that at six years old my daughter is cute. I love to snuggle her. She has adorable glasses that slide down her nose, big eyes, and a bright smile. Her clothes are sometimes a titch big on her, and that’s endearing, and she has delicate features, small fingers, and a tiny pug nose. I get that she’s cute, but please let’s not let that define her; let’s not let that be a factor that holds her back, and tears her down. Let’s look beyond appearances, past cute, to building on potential and feelings of self-worth tied to intrinsic factors. Let’s acknowledge the person with a simple “hello,” instead of talking about them like they’re not even there.

Babies are cute. Let’s leave it at that.