Balancing act: addressing illness and disability in literature and media

a selection of McDaniels' books.
a selection of McDaniels’ books.

Remember Lurlene McDaniel? When I was in elementary and middle school, I couldn’t get enough of her books. For those who missed this 90s pre-teen phenomenon, McDaniel specialized in what the Daily Mail has recently dubbed  “sick lit,” books about terminally ill kids and teenagers, or those whose friends or family members experienced cancer, diabetes, suicide, HIV-positive status, the list goes on.

Although the Mail gets its back up about more recent popular releases, including The Fault in Our Stars (which, I admit, I have not read), the phenomenon of kids reading books about other kids’ hardships is not new. McDaniel was writing books like Too Young to Die; Don’t Die, My Love; The Girl Death Left Behind; She Died Too Young and some 60+ others, as early as the late 1980s. I gobbled them up, until my mom found out what I was reading and banned them for being “too morbid.” She thought my fixation on illness and death was damaging to my young psyche, and because they were verboten, I read them all the more fervently.

But what was my mother saying, by trying to protect me from these stories? I’ve been thinking a lot about this lately, after I read the Mail article linked above and several reactions, including this one by s.e. smith, which is fantastically articulate and very much aligned with my own. Those responses ranged from pearl-clutching horror to scoffing at the supposed “phenomenon” as just another feature in YA that has been as much a part of the genre as, say, vampires, werewolves and femme fatale crime busters. (Nancy Drew and the entire Babysitters Club, represent).

When I read about teens with life challenges that were greater than my own, it appealed to two sides of my still-forming brain. On one hand, it made my own problems feel less lonely. It lent perspective to my own experience, in a forum that I had chosen and was therefore more receptive to than, say, my parents telling me to count my blessings. As a shy kid, my childhood was a lonely, introspective time. Given my propensity for reading and scribbling poetry in my notebooks instead of gossiping with the other girls during recess, I was already prone to self-pitying ennui. Reading, say, Goodbye Doesn’t Mean Forever showed me that “Hey, Sylvia Plath. Maybe the other girls give you a hard time about your clothes, your hair and your propensity for rhyming couplets [guilty], but you’re not dying of leukemia. Turn off the oven, kid.” Reading about other kids whose lives weren’t all frolicking through fields of dandelions made me realize, hey! Maybe perfection isn’t the norm, after all.

But part of me also enjoyed the voyeurism and yes, education that came of reading these stories. Human beings are naturally curious creatures. We want to know what it is to live inside someone else’s skin; to feel what their bones feel like from the other side of their faces. McDaniel’s books let me live those lives that were so radically different from mine, in an environment that was safe for all parties involved. That taught me that those experiences, of cancer, terminal illness, suicide, self-harm and other life challenges, did not make those undergoing them any less human, any less worthy of love or any less than anyone else. And that’s a lesson many adults could use, too.

When I was a kid, I attended a very small, Catholic grade school. We wore uniforms every day, religion class was in more regular rotation than recess and all of my classmates came from pretty much the same background as I did. We were all milk-white, corn-fed Midwestern kids. Almost all of us had two parents, a minivan and a white picket fence at home.  Everyone knew that one girl was from a Broken Home because she didn’t make a card on father’s day, like the rest of us. The teacher made sure to ask why, in front of everyone else.

Diversity central, this was not. But reading McDaniel’s books under my desk during Math class (sorry, Sister Anthony) allowed me a peek into a world outside our insular bubble.

I’d argue that exposing kids to others’ suffering and hardships in literary form provides a safe environment for exploration. I’d like to think my experience of illness and disability in these early literary journeys prevented me from committing the social gaffes that my ignorance may otherwise have bred, once these (normal, natural and for most of us, eventual) challenges entered my framework, later in life.

Shielding children from the realities “sick lit” presents is more damaging to those who exist outside the idealistic view we have of childhood than it is to the kids who read them. The world is as much comprised of those who suffer as it is of those who don’t. More so, even. We’re doing no one any favors by ignoring them and I would argue that it’s subjugating to push their experiences under the social carpet.

Illness, disability and tragedy are isolating. It’s hard enough to be a sick kid without having to endure the other children’s questions (at best) and fearful rejection of what they haven’t been exposed to and don’t understand. Sheltered children often turn into ignorant adults, and I think that, by advocating we hide our children from the hardships their peers can and do undergo, we’re perpetuating a culture in which everything that isn’t bright, shiny and happy is other, wrong and to be looked at sideways, if at all.

But, as like most coins, there’s another side to this one. What I think the books I loved did well and, from what I’ve heard, the books the Mail maligns also succeed in doing, was providing empathy and education without crossing the invisible line into inspiration porn. They didn’t portray their subjects as freaks of nature or suffering saints whose courage in the face of adversity was something to aspire to. That’s where much of the depiction of “the other” in books, movies, television and other media gets it wrong. The kids in McDaniel’s books got angry. They lost friends. They didn’t get better. A lot of them died. In other words, they were people who were living their lives, with all the joys and challenges they presented. She didn’t, to my recollection, mine her subjects for inspiration or dramatic effect so much as she showed the reality of their circumstances, warts and all. They weren’t heroically sick kids. They were just kids who happened to be sick. That, I think, is an essential difference.

There’s been a lot of buzz about Silver Linings Playbook lately and how it depicted its mentally ill characters. This, from WebMD, is one such article, and I think it does a good job of breaking down why the movie (although excellent for entertainment value) is problematic at best. The old “love conquers all” trope sells well at the box office, but it doesn’t do the mental health community any favors. It’s an inspiring story, sure. But that’s exactly the problem.

How about the portrayal of disability in the popular teen drama, Glee? From the cringe-inducing wheelchair dance, to faking asperger’s, to the sentimentalization of downs syndrome and the blatant subjugation of a deaf choir, it’s virtually unwatchable to the socially conscious viewer. And yet, it receives critical acclaim for being so “inspirational,” to the static consumer who doesn’t stop to think about how these portrayals exploit the communities these characters are supposed to represent. This scholarly article does an excellent job of breaking down why Glee fails so spectacularly, and is much more articulate than my wordless blood-boiling on the subject.

Unlike the mainstreaming of “sick lit,” Glee takes active steps to make sure the viewer knows how hard life is for its characters, how much they have to overcome, and how solidly they will always exist outside of “normal” society. Rather than making a case for acceptance and education, Glee works hard to keep its characters immersed in disadvantage, and doesn’t do any of its young watchers anu favors, regardless of their life circumstances.

I was going to wrap up this blog by discussing the depiction of both physical and mental disability on the cult drama Friday Night Lights, a show that has received much praise for the way it handles the injury and subsequent rehabilitation of the former football star, Jason Street. Full disclosure: I’m really, really late to this game and am only now slogging through the first season. I say “slogging” because, so far, I’m waffling between being impressed with the show’s attempted accuracy and angry at its many, many shortfalls where it could do so much good. I don’t like when characters who fall outside the Western concept of “normal” are mined for dramatic effect, and that includes the “heartwarming” tale of the football star who bounced back and is now regaling his small town with his tale of triumph. I will say, though, that FNL is trying harder than any show I’ve seen in a long time, even if it falls far short of what it could do.

That, I think, is my main point in this discussion. We need to recognize that there are many ways of experiencing this world. While they are not all created equal, they should also not exist on a hierarchy that is as starkly delineated as it is, today. If exposing kids to “sick lit” makes them realize that the world is not a perfect place and those who do not experience it as such are not less human because of it, then I say bring on the reading lists. If, however, the media chooses to hold up sick, disabled, mentally ill, gay, etc. characters as pinnacles of both human frailty and heroism, then that’s something we need to address. It’s a difficult balance to strike, no doubt about that. But I look forward to the day when these issues aren’t issues, anymore. When we all just recognize each other as people with individual lives, and move on with our own, accordingly.


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