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

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.