A Little Personal History

The first time I officially recognized my illness as a disability was in 2006 when I registered with Student Disability Services at Barnard College, which I attended at the time before transferring to Penn. I was initiated into the world of Reasonable Accommodations and Documentation. I was encouraged to frame my “invisible disability” illness to professors in terms of “flare-ups.”

I was encouraged to disclose my illness but also “not let it define me.” Was my illness a crutch? Or was sitting some classes and assignments out crucial to maintaining my already fragile health?

And so began a cycle of shame and pride, secrecy and disclosure.

For someone like me, who was frighteningly ambitious and set her sights on the top, not to mention negotiating an intensely competitive academic environment, accepting what I could and could not handle was a process that took the better part of 8 years.

Saying “I think I can, I think I can” didn’t apply anymore when it was my mind that was affected. The “thinking” was the root of the issue.

At Penn first as a student and later as an employee, I navigated my abilities and disabilities as I accepted that I was now differently abled and would be for the rest of my life.

Some Recent History of Disability in YA

Stories of disability and illness seems more present in young adult literature than adult fiction, at least from what I can tell. And  I don’t think this is a bad thing. Of course, I think we can divide young adult literature into Before and After John Green’s 2012 novel, The Fault in Our Stars. After the publication of Green’s novel, stories of illness and disability seemed to be everywhere and there was definitely a fair share of cancer novels, particularly those that dealt with relationships romantic and platonic. The Daily Mail wrung its hands wondering if “sick-lit” was detrimental to the wellbeing of young adults.

Shocking–teens who have illnesses and diseases might not take everything so gravely and might actually want to have sex or a romantic relationship just like “abled” kids!! This Daily Mail article sparked many heated responses, including from The Guardian and John Green, who destroyed The Daily Mail in a collaboration on a parody song you can see here.

Anyway, other notable recent works of young adult and children’s literature that feature disability and illness include Wonder (2012) by R. J. Palacio, which was selected by the district where my brother teaches as the summer reading novel for the middle school and addresses deformity and illness. Another novel that I fell in love with was Cammie McGovern’s contemporary romance novel, Say What You Will (2014). In a recent article in Horn Book Magazine McGovern explored the history and future of disabled characters in children’s literature. McGovern celebrated the hero of Wonder and the disabled character of her own novel for their intelligence and witty voice. However, she noted the danger that comes from portraying disabled kids as exceptionally abled when it glosses over the challenges they face. “It’s almost as if we’re ensuring acceptance of disabled characters by making them extra smart and appealing,” McGovern writes (p. 37).

“It’s not a crime, because many kids with disabilities do have normal intelligence, and their experience living as an “outsider” has made many of them wise and thoughtful beyond their years, but I want to make a plea to myself and others. Let’s all remember, as readers and writers, that the best stories—and the most lasting—are the ones that sound the grace note of truth,” McGovern concludes (p. 37).

McGovern makes an effective point. Sometimes writers seem to be overcompensating, thinking that a disabled main character will be more interesting to non-disabled readers when the disabled character is hyper-intelligent. Yet I believe we need to see characters struggle, to see them overcome challenges not through a sophisticated, stylized voice but through acceptance of the limitations and opportunities reality presents.

I’ve said it before and I’ll say it again, I am a huge fan of the #WeNeedDiverseBooks movement, which has been highly visible in the media, lists on their mission statement that they include disability to be included in the definition of diverse. The organization lists “people with disabilities” with an asterisk, explaining in a note that, “*We subscribe to a broad definition of disability, which includes but is not limited to physical, sensory, cognitive, intellectual, or developmental disabilities, chronic conditions, and mental illnesses (this may also include addiction). Furthermore, we subscribe to a social model of disability, which presents disability as created by barriers in the social environment, due to lack of equal access, stereotyping, and other forms of marginalization.” One can hope that the We Need Diverse Books movement, with its diversity festival, grants, awards, internships, and more, will be able to stimulate the publishing industry to devote more space in the catalogs to diverse literature that includes disability in literature.

2015 YA Novels of Disability and Illness

Well, spoiler alert: I think it’s going to be an awesome year for disability and illness in young adult literature. The next few months herald a harvest of novels that address these issues. Let’s go through a timeline of the next few months…

June

June 2

Because You’ll Never Meet Me by Leah Thomas is about an impossible friendship. Ollie is literally allergic to electricity and has frequent seizures. He lives in a cabin with his mother and pines for the girl next door and writes long letters confessing his secret hopes, anxieties, and struggles with his friend and pen pal, Moritz. Moritz himself has a weak heart that is kept pumping through an electric pacemaker. The two boys grow close but live far away and besides, how could they ever meet up or even talk on the phone? I love this premise because these two boys’ worlds that once seemed closed and contained are about to expand. I also love epistolary novels and novels that have to do with letters. It’s no surprise Thomas’ novel got its own email promotion from Publisher’s Weekly. Thanks to the publisher for providing me an ARC through Netgalley.

June 16

Every Last Word by Tamara Ireland Stone features an illness that I see represented in young adult literature far more than any other: obsessive compulsive disorder. Heroine Samantha McAllister suffers from Purely-Obsessional OCD, meaning her mind seizes on dark and inappropriate thoughts and recycle them over and over again. I have experienced this and it is awful. It’s like your mind is a broken record and cannot get past the skip in the track. Sam is introduced to a group of misfits who call themselves the “Poet’s Corner” and starts to open up a little more while at the same time embracing the crazy. Most depictions of OCD that I’ve seen in young adult literature are light-hearted and humorous. It should be interesting to see if Stone’s novel takes that approach or instead strikes a more somber note. Either way, this is an Amazon pre-order for me. Cannot wait for June 16!

Get ready for the page break…

July

July 7

Since I adopted a deaf cat last year, deafness has been much more present in my life. I’m looking forward to finishing up Cece Bell’s El Deafo, a graphic novel about growing up deaf amongst those who hear and those who don’t and what it’s like to go back and forth between those worlds. So when I stumbled across the listing for Laura Lee Anderson’s Song of Summer I promptly freaked out and sent in a request (and pre-ordered on Amazon just to be sure). Anderson’s novel is a contemporary romance that stars a music-obsessed young woman and a closed-off deaf young man. I have high hopes for this novel because I think it’s going to be rom-com territory while also juggling the tricky theme of differently abled-abled relationships. Okay, and if all else fails it might lend me some insight into the world of Jon Snow, my cat. 

September

September 1

Everything, Everything by Nicola Yoon is going to rock my world, I can just tell. It has gushing reviews on Goodreads from some of the choosiest super-reviewers. Protagonist Madeleine Whittier is allergic to the outside world so much so that she cannot go outside and has not gone outside in all of her 17 years. But then she gets a new neighbor, the handsome Olly. Madeleine promises that their love is doomed and is almost certainly a disaster. You all know I’m a sucker for Crazy, Beautiful Love, so I say, bring it on. (Okay, and also thanks to the publisher and Netgalley for letting me snag a review copy of one of my most anticipated books of the year.)

September 16

September 16th is a date I have circled on my calendar because it promises to be freaking awesome. Two of my most anticipated novels are coming out that day, so let’s kick it off with A Madness So Discreet by Mindy McGinnis. Yes, I know madness, so this fierce premise gripped me in the heart and didn’t let go. In 19th century America, Grace Mae is tormented by mental illness and locked away in a horrific lunatic asylum until a visiting doctor who studies criminal psychology plucks her from despair and spirits Grace Mae away to a more ethical asylum so she can help him with his forensic psychiatry studies.

What’s that you say? We have Sherlock Holmes, the “Consulting Detective” and Moriarty, the “Consulting Criminal,” so does this mean we now have a “Consulting Crazy”?

Yeah, that’s what I mean about a “fierce premise.” Huge thank you to the publisher for giving me an ARC through Edelweiss.

Also coming out on September 16th is A Step Toward Falling Cammie McGovern (quoted and reference above). McGovern’s second novel focuses on two teens, Emily and Lucas, who are reluctantly roped into helping out at a local community center for disabled people. Emily and Lucas are forced to reconcile their community service efforts with the mistakes they made by not preventing the assault on their developmentally challenged peer, Belinda. I love this set-up because McGovern asks us to think about how we interact with disabled peers. I remember being a teen and being confused about the differences between abled and differently abled peers. Emily and Lucas experience an honest and uncomfortable feeling. I plan on being there with them on their journey towards tolerance and compassion. Thanks to the publisher for giving me an ARC through Edelweiss.

December

December 1

Not If I See You First by Eric Lindstrom is going to rock my world and tear me apart this December even though sadly my review copy request was denied. Sad face. Lindstrom’s novel features a blind teen who is deep in grief after her father’s death. Normally bursting with life, Parker feels lost and depressed. Then a boy who once wronged her comes to her school and she is asked to confront questions of loss, atonement, and forgiveness…and maybe even love. I’m ready to be ruined, so bring it on.

Final Thoughts

Fortunately I’ve been lucky enough to snag advanced review copies of some of these novels thanks to Netgalley and Edelweiss, and other novels I’ve just purchased or pre-ordered outright. In any case, by the end of this year we will have more representations of illness and disability in young adult literature. Will these be positive and contribute to a productive dialogue? That depends on how you define progress. For me, asking people to think about a differently abled world in any form encourages us to look at our abilities and restructure our perception of others. Almost every time I read a novel that addresses bipolar disorder I feel empowered that there are other people like me. Measuring myself against others puts things in perspective. So I say, let’s get ready for a banner year of representation of illness and disability in young adult literature. We need disabled lit indeed.

References 

McGovern, C. (2014). Beyond the Magically (Dis)abled. Horn Book Magazine, 90(6), 35-37.

We Need Diverse Books. Mission statement.