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.”

41 comments:

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: https://disabilityequityanddiscourse.wordpress.com/2016/10/17/the-hospital-for-sick-children-warriors-ad-campaign-and-the-impact-it-has-on-disability-discourse/

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,

Josée

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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

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’Ăªtre 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

Peter,

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
www.canchild.ca

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.

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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.

you didn't see the whole ad campaign. even children who die are not done fighting. their bone marrow and blood and cancer goes to labs to further the development for cures.

I have the same problem with Princes Margaret Hospital for its campaign slogan, 'Conquer Caner in Our Lifetime.' I am grateful for the recent book, 'Malignant Metaphor . . . ,' and I recommend to everyone, including hospital campaign directors, Susan Sontag, 'Illness and its Metaphors,' and, George Lakoff and Mark Johnson,'Metaphors We Live By' (1980, and 2003. Stephen H. Ford

It's a complex campaign that is doing exactly what it's supposed to do: raise money and bring in new donors. I like it because it gives those who do identify as fighters something to feel validated by. Other ads aren't going to feature the fight/warrior theme. In the end, I think it's important to be able to choose how you identify. I can see how this ad doesn't sit well with some people and those concerns are completely valid. At the same time, it's facilitating discussion about disability in a major way, something that Bloorview's recent campaign didn't do as well. That's something to think about!

What bothers me about this blog post is that BLOOM is a mouthpiece for Bloorview and there are many Bloorveiw clients in this ad. What if they identify as warriors? What if they want to learn to walk? Their perspective is just as valid as the other side. Are they going to feel less welcome at Bloorview now?

Hi Anonymous -- thanks for your message. This is Louise Kinross.

I agree that I think the SickKids' campaign has generated a lot of discussion, which I think is great!

I'd like to clarify that BLOOM is not a "mouthpiece" for Holland Bloorview. It's a forum for parents of kids with disabilities and clinicians/researchers/students to share their expertise and opinions. We have a disclaimer on the blog that says "views expressed do not signify endorsement by Holland Bloorview."

The headline of this piece is "Why I can't be for the SickKids vs ad" -- and my name is on the byline. It is an opinion piece, written by me, not a hospital position.

In the piece I say specifically that I "honour and respect the families who participated in this ad." I hope that honouring and respecting are consistent with welcoming -- because I would never personally not welcome families to Holland Bloorview. My piece was about the choice of a hospital to use the battle metaphor -- and the language of winning, which is in the copy that goes with the ad -- not the choice of individual families as to how they understand and think about their journey. I hope if there was confusion over that, this will help to make it clear.

Thank you for taking the time to write and share your opinion!

As someone since the age of 25 been fighting chronic illness and am wheelchair bound i have to disagree with you. I love this add and i feel empowered by it and stronger to keep fighting. In no way do i think this add implies that if you are not beating your illness, disability, limitation ect that you are a failure. Because ever. day. with any limitation is fight just to wake up, to breath, try not to have a heart attack, to spend hours and days hooked to tubes and machines, breathing in meds, doing hours of any type of therapy ever single day and doing everything you can to keep yourself alive and strong for that one day to hopefully be able to do it again the next is the biggest fight. So many sacrifices need to be made sometimes. The kids that live the medical lifestyle day in and out are forced to grow up and mature faster then most kids.When just trying to every single breath you take throughout one whole day can be the most exhausting fight. Every day is a fight and when the day comes that is your last whenever that might be, you still won your round because u gave it your all every day. I know at the end of the day for myself i feel victorious because i at least made it that far. On days where all i managed to do that day was change my shirt because that took all the energy i had for the whole day, i still won that battle for that day. Days I'm hooked up to feeding tubes, my arms ache from pushing the wheelchair, i have to stay conscious that im still breathing. Days I need to watch a clock so i can empty my bladder because i dont feel the need to ever pee, and i cant lift my head off the pillow because i'm so drained from therapy or throwing up all day, never once do i feel like a failure. Whatever battle, however long it lasted i've faught my fight and i've won MY fight. whatever it may have been.

Thank you for responding Louise. I don't think many people read disclaimers (in fact, most research shows that they don't!) and as long as I've been coming to Bloorview BLOOM has been front and centre on signage when you walk in the building. It's hosted on the Bloorview site. Even if it's not an "official" mouthpiece for Bloorview, it is by default.

I know I feel uncomfortable about this post. I'm also uncomfortable with the anti-SickKids mentality I find at Bloorview a lot... can't the two hospitals support each other or at least not denigrate the other? So many kids are seen at both. And when they get old enough, they will be reading these blog posts. And also, some kids embrace their disability as part of their identity and others see it as something to fight. Either way inclusion is important!
Your opinion is yours and you have every right to it but maybe a personal blog or a website that's NOT affiliated with Bloorview would be a better place for pieces that specifically target another organization, especially one that also treats most of our kids.

Hi Anonymous – thanks for your message.

The intent of my piece was to shine light on how an ad included images and words that devalue children who use wheelchairs and who have autism – not to denigrate the work of SickKids.

Holland Bloorview and SickKids have a deep, longstanding and productive partnership and always will.

I hope kids and youth who see the ad and read my post will use them as a starting point for discussion.

I believe that this piece was written in a balanced way. I talk about how the humanity and compassion our son has received at SickKids is what’s made all the difference in his care.

I hope you keep reading and commenting.

The notion that fight or battle as associated with quality of life is disturbing. My husband lived with MS for over 25 yrs. while there were many strategies and adjustments to living to accommodate his body , we did not spend our lives in battle. There never was any chance of defeating MS. That is not a option for many living with chronic health issues or variant degrees of ability . It goes to the notion that only those with bodies deemed "normal" are winners and every effort should be made to aspire to be perfect body . Wheelchairs are legs to those who need them . Seeing wheelchairs displayed as rubbish of war is disrespectful to someone who values the chair as much as someone values their legs. If you sit in your car to get around it is acceptable but if you sit in a wheelchair to get around it is considered less than .
if someone is not able to live in a perfectly functioning body or mind should they have to spend their lives in battle and feel diminished and inferior.
A saying I like is " it is not about weathering the storm , it is about dancing in the rain"

Louise,

I came across your post after my sister, who is an MD, told me that there were people against the current SKH ad campaign because they felt it marginalized children unable to "fight" or improve from a medical standpoint. I have to admit that at first I was enraged and couldn't believe that anyone would be against any measure taken to bring millions of dollars and new donors into the fold. Reading your post, I tried to rationalize the arguments but couldn't help get around what only felt naturally logical: great ads = more funding. However, just before writing my response, I decided to look you up first. When I discovered your personal experience being the mother of a child with mental and physical disabilities I immediately had a change of heart. It's was not my place to tell you or any other parent in your situation how to feel about something that I myself don't live with and can't even begin to imagine. If the ads hurt you in any way or made you or your child feel lesser, invalid or unrepresented, then I am truly sorry and don't like that they had that effect at all.

I would just like to touch on one extra thought I had though. In the 80s and 90s, some people argued that the fanfare surrounding Terry Fox and the Marathon of Hope was in fact, detrimental to other persons with disabilities; especially those with more extreme circumstances than his. They felt that the publicity of his run across the country led to an environment where they where all disabled people were made to feel as if they had to achieve something extraordinary, or were expected become "Supercrips" in order to be validated. In the same way that many children cannot partake in the "battle" metaphor proposed by the new SKH ads, many people couldn't achieve the grandiose task taken on by Terry Fox. Though even he ended up "losing" his battle against cancer, since that time, awareness has increased ten-fold, and over $700 million dollars has been raised as a direct result of his legacy. Because of that, many cancer treatments that didn't exist in 1981 do today and the survival rate from Osteosarcoma, the type Fox had in particular, has increased to over 80% without amputation. That is huge.

Nobody wants their child or loved one to be a martyr or the "loser" of a battle, but they also don't want others, including everyone in the future to experience the same disabilities and illnesses either. The campaign may not have shed light on every circumstance or individual battle that every child with a major illness or disability faces, but the funds, awareness and new donors that it does bring in will no doubt help win the overall war against these all of these issues in the long run. Just like The Terry Fox Run did.


I agree and thank you Louise. My son was finally discharged from Sickkids after a grueling 2 month battle for his life. Every time I saw those posters, I was reminded my son would not be leaving the hospital better off than when he went in. He has no control over his illness/condition, but the Doctors do. I would like to see posters with the Doctor replacing the patient..as the fighter. I think it may make them more accountable and responsible to find cures and never give up.
Thank you
Marilou

Hey Benjamin. Many people with disabilities and families of people with disabilities don't see their disability as something needing eradication or curing. I know many people with disabilities who actually enjoy their lives, participate in their communities etc. I would rather we focus on challenging society's ( and the medical model of disability) perceptions so that all are welcomed. Of course people who are ill and suffering want relief from that and a cure and/or treatment is understandably desired. But let's stop assuming that all disabilities equal suffering. My kid is perfectly happy as she is.

@Kathy Deller

I certainly hope that my comment didn't offend you or hurt your feelings in any way. I am also glad that your kid is happy and I have no doubt that you, being her parent, like with all kids, are the primary reason for that.

Yes, people with certain disabilities should not spend their lives hoping for some kind of magical cure for themselves that is never going to happen. Not only would it be futile in many cases, but it could also lead to many people experiencing severe emotional letdown and major disappointment in the future. I also believe that society should adopt as many measures as possible to include people born with disabilities. In school, in the workplace and so on.

But the point I was trying to make is that even though people, parents and kids should be able to accept their unalterable conditions as fact, and should not have to feel bad about it either, that doesn't mean that Sick-Kids should refrain from working to prevent others from having, getting, becoming or being born with the same issues in the future. This is why research and funding is imperative. And this is why creative advertising is necessary. It may not showcase everyone, but if it generates the donations, it's doing the right thing in my view.

Again, I am not in your position so I don't have the right to tell you how to feel, but I can't imagine that you would want to stand in the way of preventing others from being born with mental or physical disabilities an illnesses in the future either. When Sick Kids announces their donor revenue at the end of this year, we should all be happy for all the kids that will ever need to go there.