Monday, October 17, 2016

Why I can't be 'for' the 'SickKids vs' ad

By Louise Kinross

Disability is personal. It’s part of identity. When your child has significant disabilities, it becomes part of your identity too.

Perhaps this is why the Hospital for Sick Children's latest campaign video SickKids vs—which positions the hospital and its patients against cancer, kidney failure and autism, and includes this image of a girl standing defiantly atop a huge pile of discarded wheelchairs—feels like a betrayal. It’s trending now on YouTube with close to 200,000 views.

“We’re on the front line every day. And we are winning,” says the copy on the foundation page. Indeed, in the video, patients join a simulated battle line with armed 'Fort York' soldiers, hop in a boxing ring to fight cancer and smash apart a kidney dialysis machine with a bat.

I get why it’s so appealing. Viewers are encouraged to choose a fight and donate. Who doesn’t want to be a “winner?” 
From a fundraising perspective, I'm sure this ad has hit the ball out of the park.

But what about the messages it sends to kids and families who aren’t on the winning side?

When you define things in simple terms, you also imply that those who don’t beat their illness or disability are “losers.” Were they not as tough as the kids wearing the super hero costumes in the video? SickKids vs. plays to the song Undeniable by Toronto rapper Richie Sosa. The chorus goes We undeniable.

Are the kids who live with permanent disabilities or chronic illnesses, or who die from their condition, not “undeniable” enough? The word “defeat” flashes during the video. Does that mean some kids “surrender?” Do we really want to believe that children have that much control over their medical conditions? And at some point, doesn’t the concept of fighting just miss the point when we're talking about health and healing?

In her 2015 book Malignant Metaphor: Confronting Cancer Myths, science writer Alanna Mitchell writes about why the battle metaphor isn’t helpful to cancer patients and their families (she also writes about why it's not a great analogy for the latest clinical treatments). “A main concern is that when someone dies of cancer, the message that remains is that that person just hasn’t fought hard enough, was not a brave enough soldier against the ultimate foe, did not really want to win,” she writes.

Many children with congenital disabilities or complex medical problems are patients at SickKids. Their conditions and disabilities are not ones that can be defeated. Did they, or their parents, not try hard enough?

And is it really so easy to define “the enemy?”

The inclusion of autism in the video as something to be battled against is surprising given our current understanding. Autistic adults tell us that accepting and valuing their differences is the way to go. To them, eradicating autism isn’t possible without eradicating who they are as people. Most people in the disability field don’t believe autism can be “cured,” any more than sexual orientation can be changed. Even Autism Speaks just removed cure as an objective from its mission. The focus now is on helping people live good lives that they value.

I honour and respect the families who participated in the video. I understand why viewing their kids as warriors is empowering. I certainly think of my son, and our family, as warriors, but as fragile ones.

From a health organization, I expect a more complex, nuanced depiction—one that includes all kids, whether their disease is cured or not. One that shows that there are many rich ways of living, and dying. In the video, all of the triumphant patients stand on two feet. I’d like to see one rocking a wheelchair, because that’s how she’ll get around for the rest of her life. And I’d like to see more images of kids who look different, like my son, due to their genetic conditions or disabilities. These kids are SickKids patients as well. I’d like to see a video that expands our conception of human value, beauty and diversity. 

We are fierce, but we are also afraid. As parents, we often feel inadequate to the enormity of our child's illness or disability. And that's okay. My dad, who served for almost six years in World War II, told me: You learned to live with fear. 

We don't need to buck ourselves up with flashing neon lights that say: 
Sick isn't weak. For one, who ever said that patients and families were weak? And for two, what is wrong with weak? Weak just means vulnerable. It's who we humans are. 

As someone whose child has had close to 20 surgeries at SickKids, I would say the humanity, the compassion, of the doctors and nurses, is what's made all the difference in our care. 

I asked Alanna Mitchell what she thought of the ad.

“Yeesh!” she wrote back. “Imagine if they had those patients dancing, instead of fighting.

At the end of her book, she asks readers if dance, rather than battle, might be a more apt metaphor for cancer. I think it’s a useful one for any disability or difference. Indeed, for any life. “Not a win or a loss,” she writes, “but a pirouette.”


I couldn't agree with you more about this, Louise. And it's a coincidence (or maybe not) that a patient advocate for cancer patients used a dance metaphor. Here's a snippet of a keynote I gave recently to the American Academy of CP and Developmental Medicine (I think the 'them and us' conception of health care professionals and patient/families plays into this battle language around disease and disability - fundamentally it is about winners and losers):

Our personal histories influence the way we approach the questions “should I fix my child or should I accept him as he is? What is my moral belief about the human worth and innate goodness of my child as he is?” And these are fundamental questions for CP and developmental clinicians too. Honest answers to those questions shared and agreed between family and professionals should form the foundation for a therapeutic approach. And the periodic check-up questions for families should be “Is this approach helping our child to do what he wants to do? Is the approach helping our family live the kind of life that we value, given the givens? If not, how we can we change our approach?”

George Bernard Shaw said, “The single biggest problem in communication is the illusion that it has taken place.” Simple, fundamental questions need to be asked and answers shared so that real communication can take place between families and clinicians.
All of us reach our goals with the help of others, as a team. It’s no different between families and members of our professional treatment team. But to be a strong team, we have to come together as equals and we have to speak honestly, with kindness and with respect. And if we dance, let it be the tango where hearts are cracked wide open and the lead passes back and forth between the two partners. In the tango, there’s no faking feelings or intentions. Steps are complicated, so there’s a near certainty of missteps. But no one minds because each partner is committed to completing the dance.

The photo at the top of your post is deeply objectionable.

This is certainly a complex issue and I my opinion on it isn't cut and dried, to be sure. I work for an organization that has as one of its goals, the eradication of the conditions that affect the lives of the people we serve. As a matter of fact, I live with one of the conditions myself.

For a very long time, I could not come to terms with feeling like eradicating the condition might mean eradicating me. But, I was wrong. I live with this condition every day of my life and the experiences I have had because of it have shaped who I am. And I like most of me. However, here is my epiphany if you will in a nutshell: I live my life, but I would not wish the pain, suffering, isolation, fear and everything else on my worst enemy - not even that guy running for President of the United States.

My problem with the current Sick Kids campaign is that it should have focused on those illnesses that the vast majority of us wants to cure and left chronic illnesses and disabilities out. From my perspective, the fight metaphor does have a place in becoming healthy again or at least trying to achieve that goal. But there certainly does need to be balance in life. The fight to survive needs to balance with enjoying whatever there is to savour in every life full of experiences and people and love. So, I continue to support people as they live with conditions and a society that disables them and puts hefty challenges in the way of finding balance. While at the same time keeping the hope in my heart that a day will come where no mother has to hear that her and her new little baby will face more than they could ever have imagined.

Louise - you have so eloquently summarized our shared concerns. As someone whose clinical work focuses mainly on autism, you've perfectly described that issue. Let's get onto the harder work of making a society that supports each other's abilities, disabilities, and most important, vulnerabilities.

I share the same thoughts. My son has life-long (& life-impacting) disabilities that (probably) will not be "cured" in his life-time. Holland Bloorview has taught my Family how to accept life on life's terms and to make the most of a bad situation. One of the messages I receive from the new Sick Kids campaign is that if you get rid of the wheelchair, you are strong. Does that make my son weak because he needs a wheelchair? All illnesses and disabilities can leave people weak & vulnerable & I wouldn't deny any child the chance of living illness/disability free. The reality (I feel) is that this latest campaign did little to consult with families of children with life-long/life-altering/life-limiting conditions. My other concern is that Sick Kids and Holland Bloorview are partners in Healthcare, yet they are currently sending different messages with this latest Sick Kids campaign.

My grandson is in this new campaign and in this commercial. He fights his battle with intestinal failure to stay alive every day and will for the rest of his life. He is my super hero. I love this campaign and do not believe it implies that if someone does not win their battle they are a looser. What is the alternative to fighting the fight - give up?

I wrote a response to this on my blog:

I was and still am angry, upset, sad, and in disbelief. It occurred later to me the day what about the children who lost their lives?
I personally feel they missed out on so many things and messed up on so many levels. I excepted more from Sick Kids and this ad failed to support my son.

I wrote my concerns in an email to some people up above at the hospital and they want to address my concerns.
Will it actually happen? I don't know but one can only hope.

I loved your response Louise and Donna! I agree with you both completely. Thank you Louise for writing such an incredible piece.

Donna, I love the dance metaphor, and Louise I like how you have challenged this ad campaign and inspired discussion.

I do identify with the battle metaphor and also wanted to offer an alternate reading of the image above. I saw the girl on a mountain, bolstered, we could say, by the equipment below her. It is a post apocalyptic scene and, to me, fits with the battle metaphor. It was notable to me that the ad included a boy who uses prosthetics and also alluded to death and other 'poor outcomes' that 'miracles' campaigns overlooked.
I also read that this is a multi part campaign, so maybe we will see some dancing! I hope so.

I love this commercial. Not necessarily because of the smaller parts of it that we over think and wonder about as people close to the community of disability (and not having a disability myself). But, because of the fight it shows so well. Yes, those fights aren't always won, but it doesn't mean anyone is a failure. And if the patient feels that way, then I am sorry and would have to say, it does suck that we have made someone feel so bad.

I have friends who are adults and support young children and adults who have disabilities. I have often heard or witnessed their fight. To get through the day, understand a problem, deal with the complexities of a consequence or even put their own shoe on. It has taught me to have compassion and not complain or get upset about what they may be dealing with, because I am not in their body. That is my own personal feelings as their friend and sometimes care giver.

Sometimes when we are too close to things, we can't take a step back and see how someone who is not close to it would see it. I am not a parent and don't make the fight that some of you talk about daily, after the doors are closed, in the middle of the night and every morning you wake up. I watched my mom take care of my brother and deal with things that she was not prepared for as a mother when she first had him. My brother has been dead for seventeen years and I know (for a fact) my mother doesn't feel like she lost a fight. He initially started his years of sickness and disability due to Sick kids, but we also used their life saving, fighting ways for years after.

I see what you are all saying. I wanted to share a different side of it. I don't think the ad saying you're a loser if you can't overcome your sickness. As humans, we all somehow go there though. Plus, there is always something out there that not everyone is going to agree with, because it serves us differently and we see it differently.

I hope people see this ad positively and that people who have disabilities and are part of the community or disability can see the different sides of this ad. Because not everyone survives, but the fight is personal to them.

Hmm, Louise Kinross, I'm very disappointed in this article. You found fault where there shouldn't be. Sick children are scared enough as is. What they are experiencing is out of their control. Not sure you understood the message, aside of this being an excellent fundraising ad...which was the entire point. Fundraising for the children. Above that? They empowered children. Sick children. They do send the message that it is difficult for all children to make it through their personal life challenges. Also, it personalizes the emotion within these families.

I didn't look for one negative message in this video, and maybe that's why I didn't find any.

All the best,


This comment has been removed by a blog administrator.

I disagree with some of your comments.
My child is in this video.
She is a live long patient at Sick Kids and Bloorview and fight a fierce battle with her chronic illness every day.
Winning and Defeat are not words I would use to describe her battle in our world at this time.
Warrior yes... fighting on the front line.
It appears you have judged those in the video and do not know any of their stories.
Shame really!
This is fundraising video. Raising money to help kids just like mine hopefully find a cure one day but that day in NOT a reality at this time

I have to be honest - I like the ad.

I have two children with autism, and I do agree with Dr. Penner that we need to work together as a society to embrace neurodiversity. BUT - every day I watch my children fight a battle. I watch my older son fight anxiety, panic, sensory issues, self-doubt and ticks. I watch my little one battle through panic, tummy problems, communication barriers, sensory dysfunction and self-injury. I love and accept them the way they are. I want society to love and accept them the way they are.

But it goes beyond society. It is a struggle that comes from within. It is a battle with their very neurological make-up that makes them feel uncomfortable in their own skins.

Maybe the battle depicted in the ad is a battle of acceptance? A battle to leave stereotypes behind and create a world of acceptance. Maybe it's not a battle for a cure at all. Maybe it's a battle for quality of life. We fight that battle every day and we always will. It's just the truth. We own it.

I have to say my son who has a life long condition and will continue to need a wheelchair for mobility was offended by the girl standing on top of all the wheelchairs. He too fights every day, but he doesn't want to feel like he is losing the battle because he needs his wheelchair. I get the ad and why it is important to fight diseases and raise money to help find cures, but there is a whole community out there of children who live with life long disabilities and they are still heroes and fight every day! Perhaps some of the imagery could have been portrayed differently and would still get the message across without offending people who use mobility aids and will continue to do so for their entire lives.
Jan Magee

I don't really like the ad and the fighting concept. As someone who was a SickKids patient throughout my childhood until my early 20s for congenital heart disease, I never think of myself as a "fighter" or a "warrior". I just think of my heart problem as one part of who I am (and honestly I'm more of a lover than a fighter!) The "war" words and imagery are over the top, even though at time I have literally fought for my life. To me the ad is very macho and loud, and I had to stop watching. But I hope it brings in lots of donations because I think the work they do is awesome.

I love this ad. I am a pediatric nurse and see the 'battle' every day. I agree with the thought that this ad is negative only if you're choosing to see it that way. I also have a daughter with numerous life-long, life-impacting medical conditions. I see her battle and bravely face her health concerns in a way that challenges my own perception of what a warrior looks like. The world of disability is full of enough negativity; this shouldn't be fodder for more.
Kris Mahura

I appreciate your take on this

Very thoughtful article, Louise!

I write to thank Louise Kinross for her articulate and insightful observations about the recent SickKids’ advertisement. As a developmental paediatrician working with children and youth with developmental impairments, and their families, I think the ‘fight’ metaphor is simply wrong, as others have articulated. Life is about Being, Belonging and Becoming – and in the context of our journey with families of children with health challenges of any kind, surely we should be talking about DEVELOPMENT (of child and family) as our primary focus. Addressing the health issues is obviously essential – but to put all our eggs in the basket of ‘fighting and winning’ (or not, for many people) seems too narrow and aggressive a focus. In the context of so many chronic childhood conditions, cure remains elusive – leading to the question: Does ‘not winning’ represent ‘failure’ – and whose failure?

Our research group has formulated a series of ‘F-words’ – Function, Family, Fun, Friendships and Fitness, in the context of Future – that seem to us, and to many families, to provide a positive and hopeful focus for their daily lives. Therapies and treatments are obviously part of this mantra, but we see the F-words as providing a raison d’être for what we (and especially families and young people with developmental challenges) are doing and why we are doing these things.

‘Fighting’ and ‘Fixing’ are two F-words many of us find challenging and not very helpful.

Peter Rosenbaum


How can we connect with your research group to engage in the journey of development ?

As a mom to a 7 week old born with severe and complex heart abnormalities, I respectfully take a different view. I posted a picture recently showing his zipper incision and the one comment I couldn't tolerate was "Poor baby." He doesn't need anyone's pity - he deserves their admiration, and he certainly has mine. He survived nine hours of open heart surgery when he was two days old. You bet he's a warrior, and I love picturing him kicking butt on the battlefield when I think of everything he's gone through. What this ad illustrates to me is that patients at children's hospitals shouldn't be underestimated.

Louise, thanks for posting this on your blog - I appreciate the space to discuss this and although you have heard my thoughts that follow, I do want to be able to share them here with others as well.

The rhetoric on this ad claims to be ‘empowering’ and ‘fierce’. I would say that if you look at some of the images – for example, the one of the child who is showing his muscles with all of his bandages, the child who is dressed as a princess and holding on to her IV stand, etc… those images by themselves are indeed powerful because these kids are being themselves and are also strong kids. I think there’s one of a girl dressed in scrubs with her arms folded – like ‘I’m in charge of my health, I’m the expert here’. Those images, yes, standalone, can be empowering. But the ad has pit those images against a part of their identities, and in front of a large neon ‘VS.’ sign, or on top of a mountain of wheelchairs. It turns into something where the rhetoric actually villainizes the disability and makes it something unacceptable, bad, evil, etc. – something again, to fix or conquer. Then, how ‘empowering’ is that, where the field of health care tells you that part of your identity is something that should be fought and conquered? Where we tell kids you’re only strong if you ‘beat’ it? Who are we to be telling kids what they can’t be if they have a wheelchair, IV, invisible disability or a cast?

My view is not to minimize what Sick Kids does on a regular basis, not to minimize the kids in the ad or say that these kids aren't strong at all. In fact, its moreso to say that all kids should be viewed this way whether or not they have a wheelchair, a UV, bandages, tubes, or a diagnosis.

My stance on this is that disability is an identity much like gender or race. If someone told me that I had to battle against being a woman or battle against being Asian, I wouldn’t accept it and it would be incredibly offensive. I really had hoped that Sick Kids had created an ad that showed, yes, our kids have diseases, medical conditions and/or disabilities, *and* they are strong kids – not *but*. I would have thought that a hospital and creative marketing agency could spread a message that shows this - in fact, I think we have the responsibility to share messages that are truly empowering for our clients and families. Because, the things that they have to truly battle against on a daily basis are the world’s structural, institutional, and systemic barriers, harmful discourse against specific identities, and inaccessibility and discrimination.

A commenter asked how to be in touch with Peter Rosenbaum. Here is his contact info:

Peter Rosenbaum, MD, FRCP(C)
Professor of Paediatrics, McMaster University
Canada Research Chair in Childhood Disability 2001-14
Co-Founder, CanChild Centre for Childhood Disability Research
Editorial Board, Mac Keith Press
IAHS Building, Room 408
1400 Main Street West
Hamilton ON L8S 1C7
Tel: 905-525-9140, ext 27834
Fax: 905-524-0069

As a young woman with a disability, that I know is not going away, I am deeply saddened by this ad. Not because of the entire “fight rhetoric” a whole is somehow incorrect, rather I am upset by the inclusion of disabilities. Before someone comments "I work with children with disabilities" or some other notion saying that they fight every day...Have you ever thought to ask them what they are fighting? I would make a bet that the fight is for inclusion, accessibility, and understanding rather than their "impairment." We've accepted our differences, why can't you?

Beyond this, it perpetuates the stereotype that those who are left with a scar from their condition have somehow "lost". For those who are already branded as "less than" by society for using an assistive device, it reminds the world that we "lost" our "fight".

As a young adult coming to university I was constantly asked "what's wrong with your leg?" or "when do you think you'll get better?", this add scares me. When all my friends, medical students and pre-med hopefuls, are praising SickKids for a wonderful job done, I am scared. Does the future of medicine, does the next generation truly believe that you have only one if you come out at the end of a battle standing, unaided, atop a pile of wheelchairs? Is my opportunity to walk unaided the greatest opportunity I will have in my life?

And fundamentally is empowering a kid to stand atop wheelchairs more important than empowering a kid to stand on top of the podium?

Thanks for sharing this perspective, Louise. It sounds like you would likely agree with the sentiments expressed by retired cancer researcher Dr. Michael Wosnick, who observed in his "Healthy Debate" essay:

“For those patients who ultimately die, the idea that they have ‘lost’ a battle implies to me that if they had just done SOMETHING else differently, then maybe they might have ‘won’. The use of the word ‘lose’ is like a zero-sum game to me: if someone or something ‘loses’, then that means that someone or something else ‘wins’. You can’t have a loser if you don’t have a winner.

“Why do so many patient deaths get reported as ‘after a long struggle/battle, so-and-so lost his/her battle with cancer’? It’s not quite blaming the victim, but it does have the ring of placing the ultimate responsibility for having died in the hands of the deceased.”

Metaphors like this that are so commonly used in medicine can unintentionally objectify and dehumanize patients.

I am the parent of two children with different rare genetic diseases. We've been patients at our local children's hospital for 17 years.
It is hard enough for us to walk into our local children's hospital for the last 17 years to see annual fundraisers that have glorified the "popular" diseases with this win metaphor. Now THIS. Presenting wheelchairs and prosthetics - parts of handicapped children's identity - as props to be destroyed? Violence instead of learning to live with your disease in the healthiest way possible? Hatred instead of mental health?
An endless parade of those who get cured as "winners" and those who stay sick as losers. Only the child who survives the cardiac event gets triumphant music?

Now the hospital officially advertises the stance that they think the kids who stay sick are losers.
Thanks, Sick Kids.

This stance came straight from ad executives who copied what worked for cancer fund-raising, period. That's obvious. This is the cancer philosophy of looking at disease fund-raising as either you either "win" and survive, or you're a loser and die.
That's the detesteble attitude that the NFB documentary Pink Ribbons Inc covered. And it was hated when cancer organizations did it, but I guess Sick Kids ignored that part of the discussion.

Cancer families often have the same story, they come from "normal" lives, got sick for a short period of time, either didn't make it or "won" their battle and went back to their lives and now the parents are "crusaders". The cancer industry is saturated with the warrior/hero/fighter/winner metaphors.

Bleeding this over into general medicine is entirely inappropriate. Our families ARE NOT THE SAME AS CANCER FAMILIES! 80% of us (according to Sick Kids themselves) will not ride off into the sunset like cancer families will - for many of US the cure rate is ZERO.

Stop asking those families to represent US. Stop asking ad execs to pretend to think like a parent of a handicapped child - "gee if I had a 'crippled' kid I would want them out of the chair". WRONG. That's bigotry - ableism. You don't know how we think. Stop pretending you do and making ads pretending you think like we do or like our children do. You'really embarrassing yourselves.

We can actually be PROUD of our children in wheelchairs. We can actually LOVE our child with a limb difference. We can actually be IMPRESSED by a child with crutches. We can DELIGHT in a child who is Deaf. Those differences are not just negative. We don't need to DESTROY their equipment in a fury. Sometimes we cherish their equipment.

Of COURSE families who starred in the ad are all for the ad. I'm sure they think it's a great piece in their kids portfolio. I know plenty of parents who leveraged their kids sickness into a modelling contract. That doesn't make the campaign message any better for tens of thousands of chronically ill children in Canada who were just told that because THEIR disease or disability has no cure Sick Kids thinks they are losers.

We are the forgotten majority. You threw in "Cystic Fibrosis" and "Kidney Disease" in your advertising for the first time in years as a pathetic attempt to pretend you've noticed genetic and chronic diseases? Too little too late. We KNOW who you constantly pay attention to, your ads make it obvious.

Perhaps your ad population should be based on ACTUAL PATIENT POPULATION NUMBERS. We would see a lot more chronically ill children represented, and a lot less pandering to "certain" wealthy donor groups.

There is clearly an IV pole sticking out if the pile the girl is standing on.
People clearly have strong feelings, and I tend to agree with Josie, see what they want to see.
May these conversations continue to push us all forward.
As others have said, I love this ad. In terms of inclusion, it is the best yet I have seen from sick kids.

Congrats on the walrus piece, Louise.

Sarah, I'm an adult version of your heart baby. I've had 3 open hearts, including two 9 hours long. All of us have been through a lot (and are still going through a lot, because it never ends), and most have died far too young. Sure we're warriors if you want to call us that, but mostly we're just regular people who happen to have a health issue. I wasn't particularly brave as a kid like everyone told me I was (I cried A LOT), and I'm not winning any battle or waging war. I'm just living my life and the less people focus on my problems the better it is for me. I don't want any pity, and yeah I want to kick butt when it comes to surviving, but as I'll likely die prematurely, in this scenario I'll be a loser. No thanks.