Blog Bonus: IndependenceChick and the Quest for the Perfect Book

Yeah, I know that sounds like a cheap and potentially horrible Harry Potter knockoff, but I hope you also thought it was funny.

I got the idea for this post after I discovered a new disability-driven website, courtesy of my good friend A, who I’ve known since our Sunday school years. I’m talking cradle room, here. A is an intelligent, beautiful, and courageous woman with more vim and verve in her little toes than I have in my entire body. She works regularly with children who have autism and other disabilities–she used to be a nanny for a family with a child who has Angelman’s Syndrome. On Facebook, she posted a link to an article from entitled, “Who Gets to Stay Autistic?”

As you can see from the article, author Alissa Hillary raises a great question when it comes to the representation of characters with autism in middle grade (MG) and young adult (YA) literature. Who gets to stay autistic, and who gets to stay around? As in, who gets to go through his or her book without being magically cured of autism, or changed so much that the autism doesn’t become an integral part of his or her identity? And, who gets to go through the entire book without being sent to an institution or other environment outside the story because of autism? If a character with autism does not pass those two litmus tests, it is my opinion that the book has a serious problem.

This article was so good and thought-provoking, I started lurking around the site and reading other content. It’s there that I ran across the question that titles this post, because the site is crammed with reviews of MG and YA books about characters with autism and other disabilities. The reviews are basically based on how well the disability is represented, whether stereotypes exist, and whether the character with a disability (CWD) is allowed to learn and grow without being cured. (This is as opposed to a temporarily able-bodied main character growing as a result of knowing the CWD, who functions as an object lesson).

Some of the reviews reflect good books that talk honestly about the disability experience and deal with realistic characters. Some of the books reviewed have significant issues, though. Some of them, I have even recommended on this blog, just because they are unique or place CWDs in situations you don’t normally see them (i.e., romantic relationships). A quick word: please understand that I in no way meant to recommend any reading that stereotypes anyone or gives rise to negative feelings regarding disability.

However, sometimes, reading a book that gives rise to negative feelings about disability can be good. For example, if the negative feeling you get is, “Wow, how could anyone treat someone, even a fictional character, this way”–well, that’s good. If your thought is, “Wow, we need better-researched books than this,” that’s good, too. I will also say this: I doubt there is or will ever be a “perfect book” with a main character who has a disability.

For example, one reviewer says of Katherine Erskine’s Mockingbird that main character Caitlin “is told she has no empathy…it’s something she [is told she must] ‘work on.’ It’s as if empathy and autism are mutually exclusive.” And certainly, the last thing PWDs need is another source, even a fictional one, telling them they must be “worked on.” What are we here, cars? Jigsaw puzzles?

Another reviewer of Cammie McGovern’s Say What You Will points out that even though Amy and Matthew, both with disabilities, are in a romantic relationship, their disabilities are not fairly represented. Matthew’s OCD is discussed “in a ‘look at the freak’ way”–from the author and other characters. Amy’s cerebral palsy is discussed through the lens of inability; for example, she has explicitly told her mom she would rather use a wheelchair than a walker because walking is painful. But because Mom is determined that Amy walk, she will not listen. Keep in mind Amy is a senior in high school. That’s as in, legal adult who should be making that decision for herself.

The reviewer of Francisco X. Stork’s Marcelo In the Real World points out many good things about this book, most notably that “instead of being told what autism is and how autistic people think, readers are living it.” Yet the reviewer also makes the valid point that most MG and YA books about kids with autism focus on high-functioning individuals who want to imitate neurotypical behavior on some level. Rarely do you see a lower-functioning person with autism in fiction, and if you do, they’re a satellite character. The focus is often on how freakish and awful it is that they don’t speak, stim, and so forth.

So as you can imagine, I was a little bemused after reading all this stuff. I thought, will there ever be a perfect book on this subject? I can ask that with some personal authority because I’ve also written a YA book with a protagonist who has cerebral palsy, and it’s been published. I can only come to the conclusion that as with the other stuff in this world, there are no perfect books. Yet I can offer these tips to writers, including myself:

1. Do. Your. Research. Notice the emphasizing punctuation? It’s there for a reason. Now, I’m not saying you have to have Down Syndrome to write a character who does. That’s like saying no white person can ever write a black protagonist. You can. But, just as you wouldn’t have all your black characters speak in Ebonics or eat soul food 24-7, don’t rely on the only representation of disability you’ve ever encountered, which may be a stereotype. Don’t rely only on diagnosis definitions and clinical research, either. Rely on real-life accounts, face-to-face if you can get them, and look for discussions of differential elements.

2. Give your character a personality and interests that do not have anything to do with the disability. Remember too, that a CWD need not be gifted. It’s okay if he or she is, but that could cross over into “compensation” territory. You know: “Why are you upset about your blindness, Zoe? You speak Spanish so well!” If you’re writing twice-exceptionality, see #1.

3. Allow characters to learn lessons that aren’t disability-related. In other words, stay away from, “Look at all the great things I can do” or “I won’t let my disability stop me.” We’ve seen it a million times. Combine disability with some other contemporary issue. Play the what-if game. Ask questions like, what would happen if my CWD:
-Went on a search for the absentee parent who left 10 years ago?
-Stumbled across a classmate’s deadly plan to shoot up school–starting with the classroom of the teacher who has bullied the student with the disability mercilessly for 4 years?
-Was a teen and got pregnant or got an STD?
-Came out as gay?
-Came out as conservative–but he’s a member of the most liberal-leaning family in SoHo?
-Found out she was a wizard/witch (had to throw it in). πŸ™‚
-Was accused of a crime, then had to solve it? (This one’s been done a couple of times, but that doesn’t make the idea trite–yet)

The possibilities are endless, so use them, already. You may not craft the perfect book, but contributions that follow tips like these could get us much closer.



  1. Found you through the pingbacks on my article πŸ˜€
    This is a great post, and great tips. Especially the part about learning lessons that aren’t directly about disability or might not even be related.
    As much as it might sometimes feel like it (being a disability studies person and all) my life is not actually all about disability. I’m a math teacher, among other things.

  2. Hey! I’m not sure if you’re a big fan of the action genre, and I admit that I haven’t watched the movie myself, but I stumbled across this article about the Mad Max: Fury Road movie. Since you’ve spoken a lot about how PWDs are represented in media and society, I was curious if you had any thoughts on the matter. Feel free to ignore if it’s not of interest to you. πŸ™‚

  3. I haven’t seen this movie but I did read the article and find it quite thought-provoking. I’m especially intrigued that there is no explanation for Furiosa’s missing limb. Why? Because she is allowed to “just be.” It occurs to me: why can’t that be the case across the board?

    Well, hold up a minute. Obviously if you’re going to write a book about a disability or a character who has one, you’ll probably want some kind of explanation because the reader may not know what that disability is–same with movies. Yet that still raises the question of the kind of explanations we give and how much time we spend on them. How much is enough? At what point do we cross the line and keep characters with disabilities from simply “being?” After all, we don’t waste a lot of time explaining why black characters are black or why Latino ones are Latino. If you wanted or needed to get scientific, you *could* discuss the production of melanin, but really, do you need to? No. Sooooo….

    I smell a post idea….

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s