Friday, September 02, 2016

Hypocritical Education About Disabilities

I've recently been trying to get some good disability-related children's books, because I'm reading children's books to practice AAC and I want my future child to have good books showing diverse people. Unfortunately, two of the books I've found so far (both with rave reviews) show a troubling disconnect between the intended message and what the author seems to believe.

The clearest example is The Autism Acceptance Book by Ellen SabinThis book is aimed at NT kids who know autistic kids - the subtitle is "being a friend to someone with autism". Overall, most of the book's message is pretty good, all about trying to take the perspective of someone on the autism spectrum, and kid-friendly explanations of autistic traits, with discussion of strengths and not too much pity.

I've noticed two problems, though. First, several times it suggests raising money for autism research as a nice thing you can do for your autistic friend, completely ignoring the ethical issues many autistic people have with a lot of autism research being funded by nonprofits. The inclusion of that suggestion is also strange given the overall positive portrayal of autism - would Ellen Sabin have suggested donations to research as a way to support a friend from a minority ethnic group, or a friend who was LGTB or something? While researching diversity is certainly interesting, framing it as something to do to benefit a minority group member implies that they need scientific help, such as a cure. This is incompatible with the "it's okay to be different" message that the book is generally conveying.

The hypocrisy is revealed in full detail by her "note to adults", which stands in jarring contrast to the acceptance message her book tries to teach children. It opens with this sentence:

Autism is a growing problem that afflicts thousands of children every year. 
Right. So now we see how Ellen Sabin truly sees us. Not as people who are different, with our own strengths and difficulties, and worthy of acceptance as the unique people we are. No, we're a "growing problem", "afflicted" by our autism. (Note: this book is aimed at elementary school kids, not preschoolers. I can assure you that if you give a bunch of elementary school kids a book with a note for adults, at least some of them will read it.)

The other book's hypocrisy is more subtle to an adult reader, but it's more integral to the book. This book is How Katie Got a Voice (And a Cool New Nickname) by Patricia L Mervin.

Whereas the first book is a nonfiction book, the second is a fiction book designed to be educational. The story is set in a school where everyone is given quirky nicknames based on what makes them unique. But the new student, Katie, is a girl with a physical disability and complex communication needs, and the perspective character - the one who assigns nicknames - has no idea what to nickname her. The implication is that he wants to nickname her based on her personality, not her disability, but her disability makes it hard for her to communicate her personality.

But good news! Katie is getting an AAC device! The perspective character reports that he didn't know this at the time, but Katie and her speech-language pathologist were working on a switch access system in her therapy sessions. Then comes the big unveiling, and the big disappointment for anyone hoping Katie might actually get some characterization.

Katie doesn't really do anything unique with her AAC device, just mimics everyone else's "thing". Still, she could at least have gotten the nickname CopyKate, or something. Instead, when she asks for her nickname, what does she get? CommuniKate! They may as well have nicknamed her Wheelchair, if they were going to base her nickname on her assistive equipment!

The book ends with a bunch of tips for how to relate to a disabled person, including the suggestion to "see the person, not the disability". Personally, I think you should see the person and the disability, myself, but this book does neither of those. Katie's characterization and even her nickname are entirely related to her disability, with no hint of anything to differentiate her from any other switch-AAC user.

Not like Melody from Out of my Mind, who is a linguistically gifted kid with a competitive streak. (And also uses a direct-access AAC device.) Or Brynn from Dancing Daisies, who from the tiny bit I've seen so far is clearly a distinct person of her own. (I can't imagine Melody putting up with people speaking for her as much as Brynn does in the starting bit, even if she was a switch-access user.) Granted, it's easier to characterize someone in a chapter book than a kid's picture book, but this honestly smacks of not even trying. (CommuniKate? Seriously? I'm still flabbergasted that she thought this was a cool nickname for an AAC user!)

I think this is reflective of a larger issue. In the parent survey I did a long time ago, part of the results lost with my old website was a pair of qualitative questions asking the parents "how do you view autism?" and "how do you want your child to view autism?" The most striking result was that most parents, especially those with more negative views of autism, wanted their child to view autism more positively than they themselves did.

The problem is that it doesn't work that way. I also asked parents "how do you think your child actually sees autism?" With the exception of the parents who had no idea or didn't think their child knew they were autistic, most parents felt their child's view of autism was closer to their view of autism than to the view they wanted their child to have. Which is consistent with children's socialization in general - kids mostly mimic what we practice, not what we preach.

So if you want disabled kids and their non-disabled peers to see disability positively, then you have to start with yourself. You need to practice what you preach. Otherwise you're just a hypocrite, and sooner or later, the kids will realize you don't mean what you're saying. A racist can't teach tolerance of ethnic diversity to children, and an ableist can't teach tolerance of disability.


Blogger Adelaide Dupont said...


There's a language system called CommuniKate. It's by Joe Reddington and I discovered it nearly 2 years ago.

The author of CommuniKate seems to use a lot of humour to promote her profession of speech therapy/teaching. It comes through in her other children's books like There was a speech teacher who swallowed some dice.

Accepting books are hard to find!

3:01 AM  
Blogger Adelaide Dupont said...

And Sabin and the philanthropy connection:

She has written other books like the Giving Book and the Hero Book and the Nickels Dimes and Dollars book.

There is also the Healing Heroes book - I wonder how veterans and family feel about this one?

What do you think of Pat Thomas's I SEE THINGS DIFFERENTLY and A FRIEND LIKE SIMON?

And there's ALL MY STRIPES.

3:13 AM  
Blogger Ettina said...

I haven't read those books, but I'll check them out!

6:58 PM  
Blogger Ettina said...

Turns out it took five years for me to get around to checking out those book suggestions!

I See Things Differently has a lot of problems, and generally comes across as a very condescending, "let's be nice to these poor inferior people because they're too stupid to know the way we do things is better" kind of book.

A Friend Like Simon is better, but I don't like the way they use the character of horrible Hattie. Especially since a bunch of the things she does could actually be something a neurodivergent kid (ADHD and/or more of the "active but odd" flavor of autistic) might do without understanding that it's bothering anyone, like butting in line. I actually find it really difficult to tell who's waiting in line a lot of the time, and had to learn to be extra careful about checking.

All My Stripes is the best of the three, but it bugs me that they list several commonly autistic strengths, like honesty, as character traits that aren't connected at all to his autism. In general I don't think it makes sense to frame autism as "one stripe" in relation to the other stripes they list, because it's not a single character trait like being honest or having a good sense of direction, it's a bunch of intercorrelated traits. I also have concerns about the fact that despite that nice talking-to his mother gave him, no mention is made of any efforts to improve his situation at school. Several of the things he mentioned should be the subject of serious parent-teacher conversations, especially the fire alarm issue - they *need* to find a way for him to escape the building during a fire alarm instead of hiding under the desk. Not only does hiding in the noisy environment result in more overload than escaping that environment, but he could literally die if he reacts that way in a real fire. It may have been beyond the scope of the story to get into what needs to be changed in his life, but I'd have liked at least a mention that they intend to change things. Definitely a topic worth discussing if you're reading that book to a child or children.

10:51 AM  

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