The metaphor of battling illness

I just posted my 20th post on Fit is a Feminist Issue.

On the loneliness of not “fighting” (guest post)

I don’t usually repost, but this one is kind of emotionally unfinished for me.  So I’m reposting.

Last week, a new ad for Sick Kids Hospital in Toronto hit social and news media like a meteor.

It’s a really powerful ad.

The ad shows childhood illness as an epic, Game of Thrones type battle where real kids, in hero costumes of various kinds, are literally “fighting” the forces that seek to destroy them. I’m not a parent, but the flashes of worried, helpless parents, tiny kids under attack, caught me right in the knees.

The ad works. It’s profound to think about the notion that “sick isn’t weak,” and when it’s embodied in small children, it shakes us.

And, it’s troubling in ways that matter to everyone who reads this blog.

I’m a partner in a small consulting firm that focuses on strategy and change in academic health sciences. We are actually working on long term strategy right now with Holland Bloorview, the only standalone hospital/treatment centre for kids with disabilities in Canada. Louise Kinross, one of the parents who writes about children’s disability for Holland Bloorview, wrote a very compelling blog post about why she “can’t be for” the Sick Kids ad.

Louise captures really eloquently the limits of the “fight” metaphor, and who it leaves behind. Nearly 50% of the clients at Holland Bloorview right now either have autism spectrum or developmental diagnoses, and Louise points out that the movement toward framing autism as part of a neurotypical/atypical spectrum is about affirmation and inclusion, not “beating” autism. For kids with profound physical or cognitive disabilities or brain injuries, the “fighting” metaphor is even more exclusive. As she says, they’re not going to “win.”

The conversations I’ve been part of in this work are really emotionally and personally challenging. Yes, there’s a lot of hope and inspiration when technology, medicine and therapy scaffold new kinds of mobility and communication, and there are new possibilities for kids and young adults with all sorts of complex conditions. And, the notion that there is always more potential is fundamentally exclusive and stigmatizing.  Many of these kids will become adults with complex conditions, who will have severe limits on their ability to control their own bodies, to communicate.  Medical advances mean that many people with conditions like cerebal palsy or muscular dystrophy are living much longer, will be adults with different kinds of independence — but they’re not going to “beat” their conditions. They will always be living with their conditions. It’s not their goal to cast aside their wheelchairs, the way kids do in the Sick Kids ad. For them, wheelchairs are mobility.

Why does this matter to people who read this blog?

The question of ablism comes up a lot related to what we write about fitness. As a regular poster writing about my experience of strength and movement, I’ve been challenged to recognize that my experience is as a singularly able-bodied person. It’s hard to know how to be with that privilege, with what I have been told can feel like a pretty exclusive celebration of strength, a centrist assumption that fitness looks like and is based on robust health, freedom of mobility, freedom from pain.

I’m still grappling with how to make meaning for myself about those lines that intersect fitness as measurable achievement (how far can I ride?! how fast can I run?! how do I compare to “other people my age,” meaning other people without mobility limits), as strength-in-whatever-body-I’m-in, as preserving health and minimizing pain as I age. Those reflections are for another post, though.

What I’m sitting in right now, in this space between the Sick Kids ad and the kids I see every day at Holland Bloorview, is that I have to engage with my own privilege around physical ability in exactly the same way I have to engage with other forms of privilege. I have to listen, really listen, to these kids and their families, and to really listen to what happens inside me. I have to admit and look hard — with shame and honesty — at where I mentally, not-quite-consciously, collude in keeping people with disabilities marginalized, outside the centre.

The Sick Kids ad implies that the energy, the passion, the fight, comes from beating cancer, illness, weakness. I know that every child and family engaged in that kind of experience is deeply into it from inside their souls, is seared and dominated and traumatized by it.

But being with the kids at Holland Bloorview has made me realize that there is a very different kind of strength required for the thing that is hardest for me — sitting still. And listening.  Especially when it’s uncomfortable.

This video is an interview with a mom and one of the kids at Holland Bloorview. It’s about nine minutes, but please watch it.  Use the closed captioning so you can hear Julian’s words.

Julian has the kind of complex physical condition that he isn’t going to “beat.” But it’s not the physical side of his experience of his life that stands out.  It’s the emotional.  I’ve seen this video multiple times, and when he talks about the need to get distracted from his loneliness, my heart stops. Every time.

The first time I watched this video, I didn’t turn on the closed captioning. And I found myself not bothering to try to understand what he was saying.  Waited for his mom to talk again so I could easily understand.  That right there is privilege, and that right there is marginalization. I realized this as I did it, to my profound shame.

I’m not comparing kids with acute illness to kids with acute disabilities and making claims that one set is more important than another. Obviously that’s not true.  But I think it’s a lot simpler (not easier, simpler) for us to hurl our energy behind a “battle,” to laud kids who “fight” as “heroes.” It’s the same motivation that made Mark Zuckerburg throw $3B behind a vision of “ending all disease.”   We want to believe we can beat… everything, apparently.

It’s a lot harder and more uncomfortable to really look at difference and how we marginalize it. When you don’t have the energy of the “fight,” you have the quiet of feeling the truth and pain of Julian’s loneliness.  I know that’s true for me, anyway.

Using the battle metaphor puts the onus on the individuals to “win,” to beat their conditions.  But it’s not people with different or complex physical, cognitive and emotional makeups who need to adjust — it’s everyone else.  Or at least, I do.

Fieldpoppy is Cate Creede, who works as a consultant and educator in the space of strategic system change in academic healthcare in Toronto, focusing on creating sustainable, socially accountable healthcare communities. She also coleads an all-volunteer learning and development project for orphaned and vulnerable youth in Uganda called Nikibasika.  Her other blog is fieldpoppy.wordpress.com.

Uncovered images

My mother likes it when I make calendars for her with photos I’ve taken. I was trying to put one together as I did other work, and realized I’d somehow misplaced all my photos from Vietnam and China in a computer migration, and had to unearth an old back up. I found some images I didn’t even remember I’d shot. Hoi An during the full moon lantern festival, during Christmas. Young girls dressed like Santa selling lanterns for $1 that you float it on the river with a wish.

china-vietnam-724

Uninvited and grateful

I’ve been trying to write this post for weeks now, and it seems to be coming out on Thanksgiving. Which makes sense in some ways, and is embarrassingly clichéd in others. Forgive me this, and forgive me my working this out out loud.

So this is a thing I should have been saying out loud before, and in saying it out loud I recognize in the saying that my “insights” are slim. But if I don’t say them out loud, I can’t build on them. So I lay them out here, slim and self-evident though they are. This is the start of a project, not a conclusion.

This is about privilege, my privilege, and really looking at it for the first time in new ways.

This has been a year where the public conversation has asked people with privilege (racial, class, sexual orientation, gender, geographical) to look harder at that privilege. That request has been going on for decades, but the chorus is, in 2016, louder, irrefutable.

Through the summer and fall of Black Lives Matter, I’ve been reading people like Te-Nehisie Coates, and Luvvie Ajayi. Trying to listen to calls for white people to not just be silent.

I have been thinking a lot this year about how it’s been relatively easy for me to have “the right politics” around race, class, xenophobia, but to hold that with the privileged space of detachment. Opinion, not inside.

This year, I started to feel real shame about that detachment. The #BLM movement (and the backlash) was part of that, but more specifically, for me, the calls to action in the Truth and Reconciliation Commission. As a non-American, I could hear Michelle Obama’s speech about the White House being built by slaves as searing and resonant, but it doesn’t feel like “my” story. The Truth and Reconciliation Commission points directly to a story that IS mine, that is my actual ancestors, people whose names and dates I know and whose DNA I have in my body. The tree full of people named Seguin, Desmarais, Piché, Chaput, Dumouchelle, Bois-Doré, Tremblay, Chauvin, Laderoute, Campeau.

A couple of weeks ago, I facilitated a major forum on Indigenous health for the Canadian Academy of Health Sciences. Many of the Indigenous scholars began their talks at the Forum with images of their families. Their ancestors projected above them, watching.

I started to think hard for the first time what it means to have your ancestors “watching,” to hold the past as in the present. To really feel what it means to be in conversation with the ones who came before you. To recognize that if you actually hold that ancestry as part of you — part of your DNA — you need to also hold the conversations and actions of your people as still alive today. Not to distance yourself from “that was the past,” but to recognize that in owning your past, you have accountability in the present.

This seems shockingly self-evident, but the images of actual people above the Aboriginal scholars gave me a felt sense of that reality in a new way.

I have mental images of the people who came before me — Jeanne Petit who came as a 15 year old Fille du Roi in 1672 to Canada to marry the unseen soldier Francois Seguin, Genevieve Bois-Doré who moved with her husband to the “unsettled” Detroit area in the early 18 c. I attribute a certain kind of courage, resourcefulness, robustness, resilience to these people who made farms out of forests. And that is all true. But — to my shame — in thinking about those stories, I have rarely engaged with thinking about these people in relation to who was already on those lands. What those conversations and interactions were like. And what I can learn from that.

One of the Indigenous scholars at the Forum in September, Charlotte Loppie, was interviewed on Sunday Edition on CBC a month ago and described structural inequality in simple, compelling terms.

At the Forum, I told her how effective and important I thought that interview was. She thanked me and said “are you non-Indigenous?”

I said yes.

“Mostly I get feedback from other Indigenous people,” she said. “What’s your ancestry?”

“French Canadian, mostly,” I said.

“You’re not unIndigenous,” she said with a wry smile. “Even if you don’t have Indigenous ancestry — which is rare for French Canadians — you’re tangled in it.”

So how do I untangle that, and what is the meaning of Truth and Reconciliation in this context? What assumptions am I carrying from those ancestors who were told by the King of France that they could just take this land, and how are those assumptions continuing to live in the way I participate in or perpetuate structural inequity in this moment in 2016? Not just in an indigenous context, but in all the intersectionalities where my white, western privilege means I can choose to remain distanced from the swirl of bias and racisms all around me.

In my work, there are some direct things I do about access to health for “marginalized populations.” I’m writing the summary paper from that Forum on how to transform the fundamental paradigms of health research with indigenous communities to recognize that change needs to be driven from and by Indigenous knowledge and communities, not external evidence/expertise. (What one speaker referred to as “the unfinished business of Confederation.”) But more than that, it’s about making it my business to join conversations that aren’t “mine” — from the simple act of trying to get my condo board to make this building more physically accessible to actively speaking out against the BC government’s rampant, ongoing stealing of Treaty land to feed their quest for liquified natural gas. To contribute my privileged dollars to Black Lives Matter, and to really listen to those voices.

This is the start of a question to own differently for me, not an answer. But there’s something in this year, in the polarization of the public discourse, that makes it impossible for me to ignore that truth and reconciliation are everyone’s role in this country.

I had two separate conversations in the past month about the Toronto District School Board’ new policy for every school day to begin with an acknowledgement of the traditional and ancestral lands of Aboriginal peoples. This is fairly novel for Ontario, although it’s not uncommon in other parts of Canada. My two friends were a bit questioning of this as glib, as lip service without real change. But I see it a little differently — I think we do need to interject this punctuation into our daily lives to shift our habits, to dislodge our assumptions.

One of the speakers at the Forum used the term “I’m an uninvited and grateful guest on this land.” There is an excellent interactive map that indicates the First Nations group whose land we are standing on. My home seems to be on the lands of the Haundenosaunee (Iroquios), Ojibway/Chippawa, Huron-Wendat, later ceded in a treaty with the Mississauga. My ancestors were mostly from the Windsor/Detroit area, among the Haundenosaunee (Iroquios), Ojibway/Chippawa, Potawatomi and Miami. There’s more to read about these stories, more for me to understand than just these names.

screen-shot-2016-10-10-at-1-12-56-pm

Last night, I asked my guests to pause at the beginning of our Thanksgiving dinner to acknowledge the people whose land we are on. I felt self-conscious about it. But it changed the way I felt about the community I was in. An acknowledgement of a question and a responsibility to engage differently. A start.

Why is there so much animosity between drivers and cyclists?

I seem to be doing most of my posting on Fit is a Feminist Issue these days (when I’m not traveling, I guess). This is long-ish but it’s something I’ve been pondering and asking everyone about all summer.

Why is there so much conflict between cyclists, cars and pedestrians? (Guest post)

Particularly resonant given that my commuter bike was stolen on Wednesday. The contrast between the freewheeling joy I usually feel while riding and all the bumps you navigate in that ride.

Kombucha

I blogged about Kombucha on Fit is a Feminist Issue.

What the hell is kombucha?

 

Doing all the things

I’ve been away almost every weekend this summer, doing all the summer things — riding my bike in PEI and from Toronto to Montreal, hanging out at my sister’s off-grid cottage in Quebec, doing the Triadventure, and last weekend, canoe-camping with some friends in Algonquin.

14052675_1615577325407199_1809781856_n

I haven’t actually done a back country paddling trip for a number of years, and I wasn’t fully in the mode at first of remembering all of the things that had to be done. And I was super nervous about the paddling. I was in a boat with my friend’s 72 year old mother, who is very game and strong but who had never camped before last year. I’m not remotely skilled at sterning — I’ve never been able to really internalize how to be in the back of the boat with any finesse, because most of the people I’ve paddled with have wanted my steady paddling power in the front.

But I did it, and I had a lesson in sterning and got way better at it (Bev and I were an amazing team by the last day), and I carried a 17 ft, 62 lb boat by myself across 6 portages.

Sam blogged about the trip also: https://fitisafeministissue.com/2016/08/31/whats-strength-good-for/

It’s been a big summer for Feats of Strength for me — paddling, riding 160 km in one day and 605 in 6, persevering through a painful 14 km run in the triadventure, just sticking with things that call on my stamina and the strength I’ve been trying to build for two decades. Physically and mentally. This weekend, I loved that we were a group of women, including someone old enough to be my mom and Susan’s 15 year old daughter (and 7 year old female lab). It’s elemental, this kind of female presence in the woods, stretching ourselves and pushing ourselves past comfort.

I have a super busy fall coming up, and the notable feats of strength will take a back seat. At least, until a major Asian adventure in December. But there’s something deeply grounding about having this summer of effort and strength behind me as I tackle complex work that I need to bring my best, most mindful self to.

IMG_4366

Myanmar, revisited

News today of earthquake damage to the temples and pagodas of Bagan in Myanmar. I’m instantly transported back to the quiet awe of my time there three years ago.

https://fieldpoppy.wordpress.com/2013/06/04/sunrise-at-pyaut-thut-gyi/

Apparently I actually wrote 35 posts I tagged with Myanmar/Burma:

https://fieldpoppy.wordpress.com/category/myanmarburma/

These are the ones people sometimes find and then ask me for permission to use the images in illustrating books or articles about SouthEast Asia. I am so lucky to have had this experience.