Undeniable? Undeniable. (Guest Post)


Georgia and Nancy, in the car. Georgia, leaning against her mom, is wearing a turquoise toque with ear flaps and chin strings. Nancy is wearing a black wool hat and orange stripey scarf.

I’ll be honest – I didn’t want to like the new ad for SickKids. I’m surprised that I do, given that, for the most part, I don’t support the use of language in illness that refers to “fighting battles” or “losing a valiant fight against cancer”. (See Cate’s post about this worry here.) This kind of language permeates health and illness care (“attacking germs!”or “wiping out cancer cells!”). Many adult patients find this language challenging, and tiring, as it suggests retaliation and active engagement in fighting is the only feasible option. And for those whose illness may worsen, the feeling that they have failed in some way is almost inevitable.

Some people simply object to words that refer to violence to describe their day-to-day existence and prefer a more compassionate approach with less confrontational language. Others may find the idea of fighting a battle with illness to be empowering, energizing, or inspirational. But there’s no consensus out there that there is one way to talk about disease or illness, and that’s something that I think this ad highlighted for me, in part.

This is not the way many want to think about illness – battles, stuff blowing apart, superhero moves, and kick drops – but maybe it’s more important to recognize that we all have different ways of thinking about all of this. And there’s no one right or wrong way.

Having worked as a nurse with kids who are sick, and having a daughter with a disability, my experience is that we often tend to treat children with illnesses or disabilities, quite literally, “with kid gloves”. We don’t talk with the same kind of confrontational language about childhood illness. We tend to talk more about fairness, the vulnerability of children and the loss of childhood. We see vulnerability first, and then the child.

So often we see the illness, the wheelchair, the central lines, the equipment, the walker, and only then, after, do we see the child. We protect, we comfort, and we soften the world around these children – with all good intentions – but the result is that we, so often, see illness, disease, and disability first before we actually see children.

Then here comes this ad, this jarring, powerful, in-your-face ad, with these tough, wonderfully, resilient kids. Kids missing limbs. Kids on operating room tables. Kids being defibrillated. Kids who have an illness, or a disability, and this ad manages to ensure that the illness or the disability – or the defibrillator – is for once, not the first thing you see. I understand the objections many have to the imagery of battle, the violence of taking a baseball bat to a dialysis machine, or the idea of including a reference to fighting back against autism, but the reality was, for me, watching this felt empowering, compelling and refreshing. It felt relieving in a way, as if someone had read a few of my thoughts some days – the thoughts that I wouldn’t necessarily voice to others, as a mother of a kid with a disability.

After watching the ad a few times, I tried to figure out what it was that I liked about this ad. There are a few things:

First, there are the images. There’s not an image here that hasn’t been thought through carefully, I’m sure. And it shows. The battle scenes show kids in the front line, adults behind. When intermingled with operating room imagery, it forces you to remember that, in the operating room, the kid on that table really is the one on the front line. Not the rest of us, in there, who can put on gloves and masks, do our jobs, and go home at the end of a 12-hour shift. We’re the supporting warriors, with little to lose. The image of a girl on top of a pile of wheelchairs draws you to really see the child, not the mess of metal beneath her. The same with the girl with the lucha libre mask – I see her, not the hospital room around her. The little girl pulling her walker behind her, in this ad, forces us to acknowledge her incredible strength and determination, the hours of painful and grueling physiotherapy that it took to just get to where she is. She looks strong, powerful and invulnerable.

Second, there’s the idea of fighting. Against cystic fibrosis. Against kidney disease. Against cancer. Against autism. This is imagery many might not wish to embrace. And I also get that many object to adding autism onto a list that includes illnesses like cancer or kidney disease. There’s a lot of childhood disease, illnesses and disability out there that those who developed this ad could have chosen from, to highlight. Autism is an interesting and clearly controversial one. But you know what? Some days I’m really sick of autism. When I see my kid struggling with the tiniest thing that has thrown a wrench into her entire day I too just want to put on a lucha libre mask and deliver a flying thrust kick to autism. I want to run across a battlefield yelling if I thought it would do any good. I don’t feel like that every day. But when I do, I usually swallow that feeling and hold it somewhere inside. I don’t share it with others or ask others to understand, because I know many won’t and, well, that’s okay. It’s a tough thing to want to fight back against that which, in many ways for others, defines who my child is, defines the opportunities others will provide and defines how others both view and treat her. For me, she isn’t my “autistic child”, but rather, “my child who has autism”. Autism isn’t all she is, and it isn’t her sole defining feature, but it is here and it needs to be reckoned with. Some days we both are just tired and some days we’re angry and frustrated. What I don’t want is someone to tell me how to feel about those days. This ad acknowledges something that hasn’t been acknowledged, for me, almost ever. When I see that image of fighting back, it resonates – and puts something out there, out loud and in your face, that many parents of kids – and kids themselves – might well feel, but don’t have a place to express.

Finally, there’s the notion of undeniability. Watch the ad a few times, and you walk away with the word echoing in your head: Undeniable. These kids are undeniable. Their inherent strength, their fight, it’s undeniable. These illnesses are undeniably rotten sometimes. It sucks to be sick. It sucks, some days, for some kids, to have autism. It’s undeniable. And cancer, well, you can’t pretend it’s not there. It’s undeniably present and pervasive. Cystic fibrosis means intensive lifelong therapy, a shortened life span and frequent hospitalizations. I’ve watched a very good friend struggle, yes struggle, with cystic fibrosis, while it is true that he also flourished and was strong and wonderfully alive. But he struggled; it’s undeniable. He really did lose his fight against this undeniable disease. I can’t imagine any other words to use for him and for the deep loss those around him feel after his death. Many felt a great battle had been lost. We simply couldn’t unfeel that. This ad, I think, in some ways, says that, hey it’s okay to feel that.

And autism? Well, it’s undeniably constant. It permeates so much of what we do, and feel, and experience, for my daughter and for those around my daughter. But she’s also undeniable. You cannot see the autism without first seeing her. I see Georgia everywhere in this ad. She’s the kid standing on top of the wheelchairs and walkers that I was told would never walk, she’s the kid marching in the superhero cape that I was told I should institutionalize, and she’s the kid playing lucha libre that I was told would never have an imagination. She’s the kid dragging her walker behind her, after years of physiotherapy, just to prove everyone wrong. And it is not without fighting and battling some days that she still moves through her world. Undeniable. I’m glad someone finally said it.

Nancy Walton is an Associate Professor in the Daphne Cockwell School of Nursing at Ryerson University in Toronto. One of her areas of research examines the experience of parenting children with special needs and acting in the role of therapist. She is Georgia’s mother and writes a blog about parenting at lifewithgeorgia.com.







When you hit the wall

A brick wall with the words "Now What?!"

Recently on the blog we’ve had some very thought-provoking posts about confronting one’s limitations in a sport.  Sam posted here about the possibility that she would not progress to the next belt level in Aikido.  And our guest blogger Michelle followed up here, talking about about being okay with what is her learning trajectory in Aikido.

(Parenthetical remark:  all this talk of Aikido is making me very curious about it.  Do I have time to start another sport?  Hmmm…. )

What really resonated with me in these posts was that we all face challenges as we continue to practice a sport or physical activity.  We talk about these challenges a lot here, sharing our own experiences with moving through loss, stress, injury, illness, job demands, aging, etc.  Reading and blogging about how we respond to life through movement is a source of support in my own activities.

Sam and Michelle’s posts show us that there are lots of ways to respond when we hit our limitations in a sport.  Sam is doing more weapons training and enjoying learning a lot more about it.  Michelle is focusing on practices that will not result in re-injuring herself, getting to know a new dojo, and continuing to learn.  Go Sam!  Go Michelle!

For me, I’m dealing with some injuries, lowered fitness and added weight– all of which result in making my sports of choice more difficult and less fun.  I’d been avoiding group riding this year because I had gotten very slow and less fit for long distances.  Also, I have had intermittent knee problems, making training painful.  I traveled a lot this year, both for work and to see family, which interrupted my regular routines.  Of course, all of this is happening in a life that is very privileged.  I have a secure job with flexibility, and am very lucky to be in this position.  Knowing that I do have many more choices than many others, I have been really unhappy about how I let those opportunities slip by, not making the most of time and control and opportunities.

I really felt like I had hit a wall.  I didn’t know what to do.

Then, I finally went on a group ride.  My friend Janet talked me into riding with her on the Columbus Day holiday, and my friend Pata decided to join us.  Before I knew it, other friends (Rachel and Steph) decided to come along.  I hardly had time to panic, and there was clearly no way to pull out of this.  And Pata promised me that we would ride together if the others flew down the road, out of sight.  So I went.

And it was lovely.  And a little hard (but not too hard).  And worth doing, even though I’m much less fit than I used to be.  It turns out that I still know how to turn the cranks.  I was very touched that my friends got together for what amounted to a group-riding intervention, and it worked.

Pata and I went for a ride that Friday– it was fun (when we were not dodging cars that were breaking all sorts of traffic laws).  I’ve been riding a bit more around town.

And I signed up for the Orchard Cross costume cyclocross race (not really a race, rather a slightly faster version of a parade on an off-road course) for Sunday Oct. 30.  Stay tuned for a not-race report and lots of pictures.

What does this mean for me in terms of dealing with my limitations?   Having hit the wall, I finally figured out something:  bikes can turn both left and right.  So I’m doing that, and seeing where we go from there.


It’s not all about winning, but sometimes a win is just what you need (Guest post)

by Rebecca Kukla

I’m a 46-year-old philosophy professor and an amateur boxer. I didn’t start boxing until I was 43 years old, which is exceptionally late. I never expected to be able to compete, because of my late start, my age, and my deep lack of faith in my own athletic abilities. Also, most pragmatically, I never expected to be able to find a match, because according to the rules I can only fight people within 10 years of my age (namely, really old to be doing this!) and in my weight class, which is the rare under-105-pound or ‘light flyweight’ division (namely, reall small to be doing this!). But as some readers of this blog will remember, I got in the ring for my first sanctioned match last year. It was intensely exciting, and while I did not win, I held my own and everyone agreed it was an extremely close fight. That was more than good enough for me! I was thrilled that I had managed to get my skill level to the point where a real competition was plausible; that I had found a match; that I had mustered the courage to get in the ring; and that I had survived three rounds without getting knocked out and with my dignity intact.

It took a while to get to a second fight. In between I had surgery and a long recovery, a fight that got frustratingly cancelled at the last minute, and various other slowdowns. But this past Saturday I got back in the ring, once again fighting at the legendary and atmospheric Gleason’s Gym in Brooklyn. And I’m going to admit something that’s kind of at odds with a lot of the norms of this blog: I really, really, really needed a win.

I was coming off several months of personal, professional, and family stress – stress of the sort that eats at your self-esteem and your basic feelings of being a competent and worthy person. My boxing was stuck in a destructive spiral: Although I had been training really hard, the closer I got to fight time and the more anxious I became, the worse I got in the ring. When I sparred I felt like I was moving backwards instead of forwards. People yelled at me to be more aggressive, to be faster, to move more … and the more frustrated I got the less I could put all these pieces together. Things degenerated to the point where one coach who I respect enormously shouted at me in frustration that maybe I should consider a different sport. I left in tears. My trainer was coming up to New York from DC for the fight on his own dime, just to corner me, and my sweetie and my son came up with me too, and I felt like I would let all three of them down if I lost. I was beside myself with anxiety and self-doubt.

Making weight was easier than usual for me this time, as I had recently done a powerlifting competition and I was pretty good about not letting my weight bounce back up after the weigh-in for that. So a few days of low-sodium, high-fiber eating and a day of semi-dehydration let me weigh in safely at 101.2 pounds. My opponent weighed in at 100.6, so we were a perfect match. Getting into the ring was also a helpful mood-booster, as the crowd always enjoys seeing the tiny little women fight, so we were greeted with big cheers. (My sense is the tiny fighters and the giant fighters are the biggest crowd pleasers.)

As soon as the fight started, my anxiety let up quite a bit. I realized that unlike during the first fight, I could actually hear and focus on what my coach was telling me to do from the corner. The first time, the noise just overwhelmed me and I was too caught up trying to stay in the fight to have a lot of control over my strategy, but this time his orders translated almost immediately into my bodily responses. I could also tell quickly that I was doing a good job of ‘controlling the ring’ – that is, I was able to move my opponent where I wanted her in the ring, rather than chasing her around or running away from her. I could also tell that I was much better conditioned this time and the rounds were not going to tire me out (unlike last time when I almost passed out and threw up once I was done).

About half way through the first round I managed to get my opponent on the ropes and keep her there until the referee broke us up. I had tried to do that probably fifty times during sparring, and I never could manage it. I would always back off too soon, or my opponent would slip away from me. Once I had her on the ropes, somehow the last of my anxiety and under-confidence vanished. The rest of the fight was fun and I managed to stay aggressive right to the very end. My opponent and I were really well-matched and I think the fight was exciting the whole way through. (Oddly, it helped that I adore her. Counterintuitive as it may sound, I am much better at punching people who I like and care about outside the ring.)

To be honest, when they announced that I had won, I burst into tears of relief. Please understand that I really, truly don’t think that something like boxing should be all about winning, especially not when it’s just a hobby on top of a full life. But on this occasion, a win was something I needed. My sweet wonderful partner has told me several times that he would have been equally proud of me whether I had won or lost, because of all the hard work and the courage it took to get into that ring in the first place. I believe him and I see his point. But I felt like the universe had been harshing on me pretty hard, and a win was just what I needed.


Me with my coaching team  


Me and my opponent post fight

Me and my opponent post fight


Watch all three rounds here!



Rebecca Kukla is Professor of Philosophy at Georgetown University. She does research on the making of medical knowledge, health and risk communication, body diversity and inclusion, the culture of eating, and other issues relevant to this blog. She is also an amateur competitive powerlifter and boxer, a loyal and enthusiastic bike commuter and pleasure rider, and a certified sommelier. She sometimes runs races with other FFI folks and is training for the Key West Half Marathon in January. She lives in the middle of Washington, DC, with multiple human and non-human animal kin.


Pain free and loving it (Guest post)

by MarthaFitat55

Last month, with a week to go before departing on a long planned holiday, I felt my left knee bail on me. When I went in to the gym for my regular Monday training, the knee was still cranky. Some moves were great, and others were not.

My trainer and I tried different exercises, and at the end of the session, I limped to my car seething with frustration, worried about my upcoming mini break which would require a lot of walking, and feeling less than impressed with myself and my knee.

When the alarm sounded its wakeup call the next morning, I was tentative, fearful, and to be frank, img_4031scared. I stood up and took that first step, and then another.

Readers, I felt no pain. The knee worked perfectly. I did a couple of practice squats, and I stood up each time with wonder. The marvelous feeling continued through the day.

I could walk steadily, without feeling a hitch in my hip or my knee. I could lace up my shoes, be it sitting, bent over, or leaning. I got up from chairs — straight ones, soft and sinky ones, short ones, armless ones – and I didn’t need to hold onto anything. I even sat on my steps and got up from those without pain and without help.

Not only was my knee functioning, everything else was too. I was full of questions: Would this marvelous sense of wellbeing and functionality disappear? Should I stop doing all the things I had been doing in case I put a foot wrong and shifted everything out of whack? So what if I was fine now, what about when I was in a foreign country away from all my supports, and the pain returned?

I wrote my trainer, both elated and panicked. We reviewed the session, and also debated the possibilities arising from my ditching the old sneakers and wearing new ones with proper support, the addition of three to four servings of fish to my meals each week, to my getting more sleep.

In the end, we had no idea of what was the one thing that changed all for the better, but we had lots of thoughts on all the pieces that could have helped. The days passed pain free and I was mobile in ways I had not been for more than a year. I went on holiday and clocked almost 85 kilometres on my Fitbit, surpassing my 10K step goal each day to reach 15K to 25K. I negotiated stairs and sidewalks of all types. My body rescue pack, containing Voltaren, Aleve, lacrosse ball, and stretch band, lay unused in the suitcase.

When I started training back in the late fall of 2013, I expected stiffness and muscle soreness as part of the deal. When my hip joint, my shoulder, and my knee went rogue though, I did not expect to deal with pain long term.

As the joke goes, “what’s best about beating your head against a brick wall is how good you feel when you stop.” Though I had been mobile in recovery and after, I did not realize how pain had become a new constant in my life, low grade as it was, until it stopped.

Women often suck it up when it comes to pain and illness. Those of us who have borne children learn techniques to deal with pain. We soldier on through illness to cook, clean, parent, manage the appointments, meet that deadline, finish that project, etc. Even in positive gym environments, there can be messages about pushing through the pain being a sign of your growing strength.

I think we have to stop that message train in its tracks. Pain is your body’s signal saying something is wrong, and if you get used to it, you may not pay attention in time to prevent further or greater injury. You may over rely on medications to deal with the pain, and unknowingly cause other issues. For example, I had no idea taking certain pain relievers like ibuprofen and naproxen caused spikes in blood pressure.  And if you are incubating an ulcer due to a high stress lifestyle, those same meds can also be a problem.

This new knowledge about what recovery means for my body has fueled my desire to keep going on my fitness path. Yes, I still get tired, and I still get muscle soreness after learning a new exercise or moving to a new volume level, but not having any pain is the best feeling. But I believe the work I have put in on strengthening my core and on relearning how to sleep and rest effectively has made a difference, not just physically but mentally too.

Martha is a writer and columnist in St. John’s. Her body rescue pack is enjoying a well-earned retirement.

Self-care: a luxury and privilege that lots of people still don’t get enough of

autumn_forest_1920x1200The rhetoric of “self-care” comes up a lot these days, with so many harried people rushing hither thither, stretched to the point of exhaustion, calendars crammed from morning to night with no breathing space unless it too is written in.

I sort of cringe when people ask me about self-care, which people do these days because I’m one of the harried masses. I cringe because I understand too that the rhetoric of self-care is steeped in class privilege. That’s not to say that the sense of being over-stretched every day respects class boundaries.

But the concept of self-care as these days has a luxurious quality about it that is frequently accessible only to those of means. I came across a great article about self-care and justice by Toronto writer Nashwa Kahn where she talks about just this. She provides a feminist analysis of self-care as a neo-liberal idea not sufficiently subject to critical commentary.

All too often, we equate it with spa days, shopping getaways with our friends, sipping on pricey lattes, attending classes in swishy yoga studios.  Even cheaper or free versions of self-care require time, if not money. And if someone is in survival mode, time is as scarce as money. Khan writes:

…we forget that a few key components in these fleeting moments of self-care are other expenses like time, individualized space and caregiving. There are generational differences in immigrant understandings of self-care, as well as differences in the accessibility of self-care. I would argue that this is linked to self-care as a Western commodified worldview – one where community needs and power dynamics can be erased in a new wave of self-care capitalism.

Despite its being mired in this type of world view, geared mostly at privileged white women, she cautions against a new, “progressive” movement where suddenly the commodities of self-care are abandoned before women of colour, who also “can and should be able to have nice things,” her to enjoy them. 

What she does call for is a more critical discourse around all aspects of the self-care “package,” so that it’s not just cordoned off into “feel-good moments”:

Now, a girls’ day out shopping, mani pedis and bougie brunch can be named self-care. People do not have to think about those who service them or the processes that enable some people to sit in a gentrifying cafe, wear clothes made in a sweatshop and dispossess other people in the name of care. People no longer have to ponder the woman they tipped a few bucks. She, like the person who made the clothes or the person who was displaced to make room for the cafe are rendered invisible, while those indulging in self-care are positioned as healing themselves in ways that cannot be critically examined.

So with all that as preface, Khan has expressed much more eloquently than I ever have one complex set of reasons why the language of self-care makes me uncomfortable.

But I think too that there’s another reason why it makes me uncomfortable, and that’s because I frankly don’t do enough of it. I’m not saying I don’t get enough manicures, pedicures, or massages. These are not regular parts of my life and I confess that, speaking to Anita the other day about possible rewards that we could take at various points in our upcoming half marathon training I was thinking more in terms of breakfast at the diner than cute new outfits or spa days. Not free, but not an outrageous luxury either.

I’m on a Facebook sabbatical this week, and to me, that’s self-care. Besides feeling as if it’s a time suck, stealing time that I don’t have right now, I’m also almost unable to bear the random and uncontrolled stream of incoming commentary and news about the US election (and I’m not even an American, not even living in the US).

I’m writing this instead of watching the third Presidential debate tonight. That’s self-care.

I plan to walk to and from campus tomorrow, 50 minutes each way, much of it on the pathway through the park and beside the river. The trees are in a perfect state of autumn transition right now. And October has been so generous weather-wise, with warm days and hardly any rain. My walking commute is a form of self-care that gives me a buffer at the beginning and end of each day. I’m fortunate to live in a city where I have a safe and beautiful route available to me, minutes from my front door.

And yes, my self-care includes running (which, despite what so many of us have said over the years, is not simply a matter of throwing on your shoes), meeting friends for dinner, soaking in a hot bath with Himalayan salt (I haven’t a clue if it’s any better than regular epsom salt, and I am equally ignorant of whether epsom salt baths are any better than plain old water), knitting, colouring (yes, I did it, I bought an adult colouring book and some pencils–I like it).

But it equally includes going to bed early, spending an afternoon cooking (I realize this only counts as self-care to those who do not have to do it every day), waking up early enough to meditate, and, alternatively, staying in bed for an extra half an hour, or hour, or longer.

I like Nashwa Khan’s critical take on self-care as a social justice issue with class and race dimensions that are all too infrequently pushed to the side. At the same time, I think there is a valid notion of caring for ourselves in kind and compassionate ways, not driving ourselves into the ground, with the only reprieves being found in pedicures and fancy brunches.

What does self-care mean to you and have you ever thought of it as a social justice issue?

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.