Call for papers: disability and illness in children's lit

Interesting find; thank you for posting this! I'm burned out enough on academic-style papers after having just recently graduated that I won't be submitting anything, but I love that they're calling for pieces on this subject.

Thinking back to all the YA books I've read, I've seen quite a few centered on mental illness (my own manuscript is largely centered on it), but much less about physical illness or disability. I can think of a handful like The Fault In Our Stars, but it's almost always physical illness, usually being played for dramatic effect, rather than representing physically disabled characters.

I recently read a really good YA novel called Say What You Will where the main character is a girl confined to a wheelchair due to cerebral palsy. She's unable to speak, can't even feed herself, and is relegated to communicating with the world by typing into her text-to-speech device with her one good hand. Author did a great job of sharing the character's thoughts and frustrations. How she looked like a drooling vegetable on the outside, but had such a rich and super-funny personality if only people would take the time to know her. Highly recommended.

I cannot think of a single book, YA or otherwise, that deals with chronic illness indirectly or directly. I have lupus and fibromyalgia and it's been kind of slowly messing up my life despite my best attempts for it to not do so and seeing a character experiencing chronic pain, fatigue, or whatever would be great. Mental illness is more represented but I usually find it rather unbelievable.

I have one story idea that the character, in the end of the story, ends up having chronic pain due a sacrifice she had to make and I have a big fanfic series that deals extensively with trauma but otherwise I admit that I haven't touched on it much in my own writing.

zoedragon said:

I recently read a really good YA novel called Say What You Will where the main character is a girl is confined to a wheelchair due to cerebral palsy.

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Added to my To Read list.

rynthewin said:

I cannot think of a single book, YA or otherwise, that deals with chronic illness indirectly or directly. I have lupus and fibromyalgia and it's been kind of slowly messing up my life despite my best attempts for it to not do so and seeing a character experiencing chronic pain, fatigue, or whatever would be great. Mental illness is more represented but I usually find it rather unbelievable.
I have one story idea that the character, in the end of the story, ends up having chronic pain due a sacrifice she had to make and I have a big fanfic series that deals extensively with trauma but otherwise I admit that I haven't touched on it much in my own writing.

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The YA Novel I’m (attempting) to write right now involves a character with a disability. The book is definitely not about the disability though—the character just happens to have it.

I was diagnosed with a chronic illness myself when I was a child, so I’ve always loved learning about medical things and researching them. I thought it would be fun and interesting to write about someone with medical problems. Not sure if that makes me weird or what.

Feel I should point you towards a blog which basically delves into disability and how it's treated in children's, middle-grade, and YA lit:

http://disabilityinkidlit.com/

rynthewin said:

I cannot think of a single book, YA or otherwise, that deals with chronic illness indirectly or directly. I have lupus and fibromyalgia and it's been kind of slowly messing up my life despite my best attempts for it to not do so and seeing a character experiencing chronic pain, fatigue, or whatever would be great.

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I have a 2008 YA book on my Kindle called Forever Changes, by Brendan Halpin, which is about a girl living with cystic fibrosis. I haven't read it yet (it's in the queue!) but it has good reviews.

I think "The Secret Garden" would be an interesting example to cover.

I use both "The Secret Garden" and "A Little Princess" as examples how you can love a book, while still acknowledging its problematic aspects. I will always have a special place in my heart for "A Little Princess" but I freely admit that Sara Crewe skirts dangerously close to Mary Sue territory and of course, the biggest problem is that Sara is rescued, rather than, y'know, saving herself. Some good messages in "A Little Princess" but I can understand why that last point rubs people the wrong way.

"The Secret Garden" is much better in that its female protagonist, Mary Lennox, isn't as perfect as Sara, but even that book has its problematic aspects. Mary disappears towards the end of the story and it becomes all about Colin, and I totally understand why so many disability advocates would have issues with "The Secret Garden." One, we're only given very generalized aspects as to what afflictions Colin suffers from and of course, the magical cure through positive thinking. Given that most people with disabilities will never be magically cured, yeah, you totally understand why stories with those would rub them the wrong way.

rynthewin said:

I cannot think of a single book, YA or otherwise, that deals with chronic illness indirectly or directly. I have lupus and fibromyalgia and it's been kind of slowly messing up my life despite my best attempts for it to not do so and seeing a character experiencing chronic pain, fatigue, or whatever would be great. Mental illness is more represented but I usually find it rather unbelievable.

I have one story idea that the character, in the end of the story, ends up having chronic pain due a sacrifice she had to make and I have a big fanfic series that deals extensively with trauma but otherwise I admit that I haven't touched on it much in my own writing.

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Ava Jae just did a blog post about this, actually, listing the few books that she could find on the subject, if anyone is interested: http://avajae.blogspot.co.uk/2015/09/on-lack-of-chronic-illness-rep-in-ya.html

Just wrote a paper my prof said I should send to conferences on this very topic I wrote about an MG though, The Real Boy (whose mc is on the autism spectrum). Nice round up here.

Emermouse said:

"The Secret Garden" is much better in that its female protagonist, Mary Lennox, isn't as perfect as Sara, but even that book has its problematic aspects. Mary disappears towards the end of the story and it becomes all about Colin, and I totally understand why so many disability advocates would have issues with "The Secret Garden." One, we're only given very generalized aspects as to what afflictions Colin suffers from and of course, the magical cure through positive thinking. Given that most people with disabilities will never be magically cured, yeah, you totally understand why stories with those would rub them the wrong way.

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*********SPOILER ALERT!!!******

I would interpret it that Colin was never disabled but that the doctor was trying to kill him in order to inherit Misselthwaite Manor.

Colin was born a little prematurely due to the accident that killed his mother, i.e. she went into premature labour then died (probably only 1 month premature, i.e. had a chance of surviving without medical intervention). He was born small and sickly and not expected to survive. I forget the exact relationship between the doctor and Colin's father Mr Craven, but it's mentioned in the book that the doctor was going to inherit Mr Craven's estate if Mr Craven had no heir. His wife died and the baby was probably not going to survive very long, therefore the doctor was all set to inherit it. But then Colin didn't die as expected. The doctor convinced Mr Craven that Colin was going to grow up to be sickly and a hunchback like his father and was unlikely to survive childhood. Colin spends his babyhood and childhood in weird contraptions that are supposed to keep his legs and back straight - but this was due to the doctor saying that Colin was going to be disabled, not in response to any actual disability that he had.

When Mary first finds Colin, she can't see anything wrong with him - yep, she's not a doctor, but if the kid really did have a twisted spine or was growing up to be a hunchback, that would be noticeable. Mary specifically tells Colin that his back is perfectly straight. If he had problems with his legs that necessitated the doctor putting leg braces on him - there was no sign of that either. The whole thing about Colin having an unspecified medical problem - that suggests the whole thing was invented by the doctor.

Of course, when Colin finally does get out of bed, he can't walk. No-one who's been forced to spend their entire life in bed is able to walk. Through the help of Dickon, Mary, Ben Weatherstaff and the magic of nature, Colin learns to walk and becomes strong in spite of the doctor's attempts to make him into a permanent invalid and die young (essentially, a very slow murder) - it's not positive thinking that does this, it's because he was never disabled beyond the inevitable muscle wasting due to having spent so long in bed in contraptions that stopped him moving. The kids do all this in secret as they all believe that Colin can't get well while the doctor is around, and the doctor is very dubious about the idea of Colin going out to play, saying that he'll catch a cold and probably die. Colin gets his way because he's still the master's son and the doctor is an employee, but it's very clear the doctor doesn't approve and tries to discourage Colin from going out.

When Mr Craven finally comes home to find that Colin can walk just as well as any other kid his age, this is also the first time the doctor sees him being healthy and active, and rather than being delighted as one would expect from a doctor who has his patient's best interests at heart, the doctor is horrified and gets ready to leave. The doctor knows Colin's got a very good chance of living to be heir to Misselthwaite Manor and the doctor probably doesn't want to be asked too many questions about Colin's "illness" and miraculous recovery.

Maybe I just have a knack for interpreting books in really dark ways....?

That Secret Garden book is pretty dark in that aspect. While I did enjoy it, there were a couple of minor troublesome aspects of it that stopped me from fully enjoying it.

This one was a biggie, for me: There was a conversation that the kids near the end of the book where they said that a woman deserved to get hit/smacked or whatever by her drunken husband because she said negative things about him. (It wasn't the husband's fault; it was "bad magic" by the wife saying negative stuff, and she got back what she deserved.)

Yeah, that part left a bad taste in my mouth.

Sorry for the random de-rail. ^_^;;

For novels with chronic illness: I recently read "Two Girls Staring at a Ceiling," which is a YA novel in verse about two girls with Crohn's disease. I liked it a lot (full disclosure: I don't have Crohn's , though for a few months I thought maybe I did So I'm not qualified to speak on the accuracy.). And it's on the Disability in Kidlit recommended list, which says a lot.

Neandermagnon, just clapping my hands and bowing my head, because your head canon is awesome. Sorry I don't have anything more substantial to contribute.

Emermouse said:

Neandermagnon, just clapping my hands and bowing my head, because your head canon is awesome. Sorry I don't have anything more substantial to contribute.

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To be honest, it wasn't until I read stuff that other people had written about it that I realised other people didn't interpret it the same way.

Regarding stories about long term illness, Marianne Dreams by Catherine Storr has two main characters with long term illnesses. The book doesn't specify what illness Marianne has, but it starts with a fever then she's bedridden for months. It sounds a bit like ME/CFS but I don't think it was supposed to be any specific illness, just that she was inflicted by a long term illness of a type that the writer had probably learned about through observation, rather than medical knowledge. The other main character is a boy who's paralysed due to polio.

Talking of paralysis due to polio, wasn't there a character in Heidi who was wheelchair bound because of polio?

SarahRoss said:

For novels with chronic illness: I recently read "Two Girls Staring at a Ceiling," which is a YA novel in verse about two girls with Crohn's disease. I liked it a lot (full disclosure: I don't have Crohn's , though for a few months I thought maybe I did So I'm not qualified to speak on the accuracy.). And it's on the Disability in Kidlit recommended list, which says a lot.

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I was diagnosed with Crohn's earlier this year. It was... a little bit discouraging seeing that the only YA that included it had both its protags in the hospital.

I wanna read -- and so probably have to write -- a story where the protag is active, heroic, and has a chronic illness, but it's... really hard to imagine while I'm struggling just to get through the day.