Disability is personal. It’s part of one’s identity. When your child has significant disabilities, it becomes part of your identity, too. Perhaps that’s why the Hospital for Sick Children’s new ad SickKids vs—which depicts doctors and patients fighting heroic battles against cancer and autism, and includes an image of a girl standing defiantly atop a smouldering heap of wheelchairs—feels like a betrayal.
Our journey with SickKids began twenty-two years ago when my son Ben was diagnosed with a rare genetic disorder. He’s had close to twenty surgeries since. A number were to remove bone tumors, including one that knocked his hip right out of the socket. When the pain is bad we’ve pushed him in a wheelchair or carried him on our backs. He uses sign language and is the size of a seven-year-old. In the last year his spine began to bend. It’s agonizing to watch, and to be told surgery to correct it is too risky. He’s also remarkably happy. Years ago, when asked if he could be anyone in the world, he signed the letter ‘B’ to his chest—his sign name for Ben.
“We’re on the front line every day,” reads the copy on the SickKids foundation page. “And we’re winning.” 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 appealing. Viewers are encouraged to choose a “fight” online 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. It’s trending now on YouTube with more than 300,000 views.
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? The ad begins with the line, “Sick doesn’t mean weak.” In the video, the word “defeat” flashes. Does that mean some kids “surrender?” Do we really want to suggest that children have that much control over their medical conditions? And at some point, don’t images of boxing and blowing things up conflict with ideas 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,” she writes, “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.”
Many children, like my son, have congenital disabilities or complex medical problems that can’t be defeated. Did they, or their parents, not try hard enough?
A recent study found that parents of 263 Canadian children with disabilities didn’t differ from those raising nondisabled kids in how positive and consistent they are in their interactions with their child. Yet, “they experience themselves as more ineffective,” according to co-principal investigator Lucy Lach, an associate professor in the school of social work at McGill University. They feel chronically inadequate.
The way disability is viewed in our culture—as a deficit, failure, or something to be “overcome”—sets parents up to never feel good enough. When my son was only days old, a clinician told me: “You have every chance of having a ‘perfect’ baby—next time.”
In the genetics field, babies are categorized as “perfect” or “abnormal”—there is no grey area. This dichotomy—like the idea of winning or losing against disease—is simplistic and destructive. We need a much more creative and flexible way of thinking about things. When your child has a disability, you start out trying to “fix it” through intensive therapy. Over time, you push back. You learn that “fighting” is not a good model for living. Instead of making the child change to fit the world, you want the world to change to fit your child—to accept your child as a full human being.
And is it really so easy to define “the enemy?” The inclusion of autism in the SickKids video as something to be battled against is surprising given our current understanding of the condition. Autistic adults tell us that accepting and valuing their differences is the better option. 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 can value.
An ad that feeds into the idea that autism is “bad” and needs to be conquered will also likely influence how other children perceive those with disabilities. Numerous studies show that kids with autism—and other disabilities—are bullied at higher rates than typical kids. Last week a ten-year-old boy in Texas doused another boy, who had hearing loss and “spoke funny,” in gasoline, then set him on fire. Some news outlets said the victim was suspected of having autism, but hadn’t been formally diagnosed. He’s now on life support. As a hospital, raising money can’t come at the expense of marginalizing a group of children you serve.
I honour and respect the families who participated in the SickKids 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, however, I expect a more complex, nuanced depiction—one that includes all kids, whether their condition is cured or not. One that shows that there are many rich, meaningful 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. A device that frees children to move should not be placed in a post-apocalyptic scene where a child survivor triumphs over it. The wheelchair is a universal symbol of disability. Kids who use one need to feel pride and agency, not failure. And it’s dangerous to blend images of life-threatening illness with livable disability, suggesting both should be wiped out.
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 blows our minds open and 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. 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 humans are. My dad served for almost six years in World War II. “You never knew when a bomb might land at your feet,” he told me. I always imagined that he somehow inured himself to the fear of death, moved pass it, switched it off. Then just before he died he recalled going out at night to fix communication lines on Pegasus Bridge in Normandy. During the D-day invasion, the allies needed to hold this bridge to get their equipment over the canal. The Germans were shelling it day and night, he said. One time Dad got back to his jeep and the engine had been blown out. Another time, one of his men was hit and died on the drive back. “You learned to live with fear,” he said. And I got it. Courage isn’t the absence of fear. It’s much messier than that, and much more beautiful.
A year ago, Ben needed a surgery and we couldn’t find an orthopedic surgeon in the adult system to do it. That’s what happens to youth with disabilities when they move into the adult world of health care (our kids don’t “grow out” of their conditions).
So I asked our SickKids’ surgeon for help. He advocated for special permission to do the operation at SickKids. Then, he came to see us just before Ben went into the OR, to make sure Ben got a sedative that would knock him out (this isn’t protocol, but I’d e-mailed him to explain about Ben’s traumatic experiences being put under). After the surgery, he came to tell us that things went well. Just before 8 p.m. he walked into Ben’s hospital room upstairs. He’d spent the day in back-to-back surgeries. His face was pale, his scrubs dishevelled and his shoulders slumped. He sat down on the side of my son’s bed, and he spoke to him, ever so gently. He made our son, and by extension, us, feel important, valued.
Recently, I e-mailed that surgeon, now retired, when I was told surgery to fix my son’s spine wasn’t appropriate. Did I need a second opinion? I asked. He didn’t mince words. “Paralysis is a huge risk with Ben’s problem, as is even postoperative death. [The doctor] is being appropriately cautious.” As a parent, I needed honesty and wisdom, not war paint and bravado.
SickKids’ creative team has been quoted saying they are trying to move the hospital from a charity brand to a performance brand in the likes of a Nike or Under Armour. But kids aren’t products. They aren’t soldiers. Their lives are priceless—no matter how they perform. I asked Alanna Mitchell, author of Malignant Metaphor, what she thought of the SickKids ad. “Yeesh!” she wrote back. “Imagine if they had those patients dancing, instead of fighting.”
The idea is that metaphor is the lens through which we see things. It plays a powerful role in shaping how we see ourselves and how others see us. At the end of her book, she asks readers if dance, rather than battle, might be a more apt metaphor for cancer. “If cancer is described as a battle then it is one, with a winner and loser,” she wrote me in an e-mail. “If it is described as a dance, then it becomes that, with all the individual artistic expression and process that implies.”
“Not a win or a loss,” she writes, “but a pirouette.”
Adapted from an article published October 17 on Bloom.
