Meeting Myself in a Book for the First Time, Again

The first time that I met myself in a book, I was a little girl–young enough to relate to 6-year-old characters, and to view 12-year-old characters as being practically grown ups.

It went something like this, and here I’m going to quote an abridged passage from an earlier blog post I wrote on meeting myself the first time, entitled “Me, The Bobbsey Twins, and Switched at Birth“:

“For years it is missing and you don’t even notice. …. Not because you don’t miss it, not because you don’t yearn for it, but because you don’t realize that it’s possible to have a world in which it exists.  … And then, one day, it happens. … And you turn the page, and it happens. Your heart seems to skip a beat and then beats again, faster than before.  You freeze, staring at the page, watching as the whole world opens up all around you, richer and more tangible than ever you knew.  … [F]or the first time in my life, I’ve just met me in a book.  Because Flossie’s friend is a little deaf girl like me. Just like me.  Here is me.  At last.”

Except then, it went like this: after a series of puzzling “lip reading” errors not at all consistent with the type of lip reading errors likely to happen in real life, Flossie’s friend says that she is “all mixed up”.  And instead of recognizing that she must be frustrated and in need of some other communication strategy, Flossie and her mother simply laugh at her.  Again, quoting from the earlier blog post:

“Slowly and reluctantly,  after talking with my parents about the book, I started to understand.  No, the little girl’s deafness wasn’t there for me.  ….  No.  The point of this scene was … See how funny these communication difficulties are?  Here I am in a book.  For the very first time in my entire life.  And the only point of having me there … was so others could laugh at me, at a little girl like me having trouble understanding what Flossie’s mother said.”

So I had finally met me in a book.  And almost wished I hadn’t.  And I’m 46 now.  And that first time still hurts.

Yes, I did eventually meet other deaf, Deaf, and hard of hearing characters in books and TV programs and movies.  And, yes, it helps.  A lot.

But here’s the thing.  None of them is the first time, because by definition you can only have that once.  And then it’s over and you can never get it back and fix it or do it better.  You can never put “first time” and “again” together in a sentence.

Except.

Then one day, this happens.

(And, sorry, there’s going to be a bit of a spoiler for the book mentioned in the next paragraph.)

One day you’re reading a book.  To be exact, it’s To Stand in the Light by Kayla Bashe.  You’re 45 years old at the time this is happening and you still read voraciously, so there are probably thousands of books behind you now.  And you like this book.  It has girl characters, and non-binary characters, and characters with PTSD, and characters who are lesbian or bi.  And they have adventures and they do brave things.  And they’re also human and complex and not at all perfect, because who is?  Some of them are kind of messed up, in ways that make your heart ache and make you want to crawl into the book and tell them that it’s all right, they’re good just the way they are, and they deserve love, and they should have love, and they will have love, because they already have it if they’ll just look again.   And you like these people.

And there’s one of the main characters who is starting to feel a bit like you in certain ways.  Not exactly like you, but close enough that you can understand why the things she finds hard are hard (even if they’re not exactly the same as the things you find hard).  Close enough, that you can remember being her, before you knew why the hard things are so hard.

And you turn the page, and it happens. Your heart seems to skip a beat and then beats again, faster than before.  You freeze, staring at the page, watching as the whole world opens up all around you, richer and more tangible than ever you knew.  And you’re sitting there on the subway train, crying.  Because the character, Bean, has now been diagnosed with attention deficit disorder–just like you.

You see, it took 45 years, but it finally happened.  This was the first time I’ve met a character in a book who was a girl growing up with ADD, just like I once was a girl growing up with ADD.

I’ve now met myself in a book for the first time in my life … again.  And this time, it doesn’t hurt.  This time, the character was written partly for me.  Here is me.  And I’m okay.

Kayla Bashe–thank you for writing this book.  May you always keep on writing more!

Disability Representation

Disability Representation.

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Me, The Bobbsey Twins, and Switched At Birth

[Edited to add: At the bottom of this post, I used to have a collection of links to things other people have said about why representation in media is so important to them.  But then the collection kept getting longer and longer until I finally decided it was time to put all the links together in a page on their own  You can check them out at Blog Posts on Why Representation Matters.]

This post was going to be about Switched At Birth.  And, it still is mostly about that, except that it isn’t mentioned until near the end of this post.  Because the more I struggled to write about Switched At Birth the more I realized that I could not possibly begin to communicate what this program means to me as a Deaf woman until you first understand about the first time that I met me inside a book.

For years it is missing and you don’t even notice.  You still read.  In fact, you read voraciously, swallowing books whole, zooming through shelves of books at a dizzying pace.  An adult would think you haven’t been reading for long, but really you have: you’ve been reading long enough and persistently enough to have consumed hundreds of books in your brief life time, maybe thousands of them.  And still, you never notice.  Not because you don’t miss it, not because you don’t yearn for it, but because you don’t realize that it’s possible to have a world in which it exists.  How do you notice something missing if it’s never been there for you?  Even if you need it?

And then, one day, it happens.  You think you’re just reading a book, as ordinary as any other book. To be precise, it is a Bobbsey Twins book, and certainly not the first one you’ve read. You’re old enough to have been reading on your own for ages, but young enough to think that the 12-year-old twins in the book are practically full grown adults.  The 6-year-old twins are much more relatable for you.  And here is Flossie talking with her mother.  A friend of hers, another little girl like her and like you, is coming over to visit.  And you turn the page, and it happens.

Your heart seems to skip a beat and then beats again, faster than before.  You freeze, staring at the page, watching as the whole world opens up all around you, richer and more tangible than ever you knew.  Because all of a sudden, now you know you’re real.  You.  Yes, you.  You’re a real person, flesh and blood. You exist. You exist, and you belong somewhere in this world.  And you finally know this, without having known until now that you had needed this simple validation of your being.  It’s as if you have been stumbling about, sure you’re fine because you’ve never known any other way of being.  Then you suddenly get to drink a tall, cool glass of water.  And for the first time you realize that you had been ravenously thirsty for your entire life and hadn’t even known.

Do you understand?  I’m a little girl–or, I was, when this happens more than 35 years ago.  And for the first time in my life, I’ve just met me in a book.  Because Flossie’s friend is a little deaf girl like me.

Just like me.  Here is me.  At last.

I hadn’t even known I had been waiting for this.  But now that I do, I can feel something cool and desperately needed rushing to fill ravenously empty spaces inside me I hadn’t known were there.

Do others know this sudden and fierce joy of discovering that it’s possible for the world to include you?  That it’s possible for you to exist, to be real, to belong, to be okay as you are right now, to be recognized as not a freak, to be a recognized human being?  Do they know what this euphoric revelation is like?  Or is that reserved only for those of us who have spent our lives in a world that erases us, only for those of us who know without ever being told that clearly we don’t exist, not really, or else we would have met someone like us by now inside of a book?  Or in a TV show? Or in a movie?

If you have lived this erasure, this invisibilization of you, then you have some idea how I felt on that day more than 35 years ago when I discovered me inside a Bobbsey Twin book.

Do you know, then? Or can you guess? How I felt when I finally unfroze enough to go on reading, to turn the page again, to learn more about this little deaf girl, this little piece of myself that had been dressed up by some author I’d never met and gently folded into this book?

I turned the page.  And the little deaf girl was having trouble understanding Flossie and her mother, over and over, and having to ask them to repeat.  This by itself was fine.  She was deaf.  They were hearing.  They didn’t know how to sign.  Having a few misunderstandings along the way, having to ask hearing people to repeat themselves a few times (or write things down if lipreading simply isn’t working) is normal when you’re deaf, at any age from little girlhood up through adulthood.  Sooner or later, as long as the people you’re talking with are patient and keep working to make communication happen, it sorts itself out.  By itself, a few minor communication breakdowns is not a big deal–not in real life, and not in a book either.

But what wasn’t making sense was that every time the girl misunderstood something, she interpreted it as something that didn’t even remotely look the same when lipreading what was really said.

“We’ll fix you up,” said Flossie’s mother.

“But I’m already mixed up,” said Flossie’s friend.

I couldn’t understand.  Why hadn’t the author talked to a deaf person to find out what really happens when we misunderstand things?  Why hadn’t the author simply stood in front of a mirror and mouthed the characters’ lines to herself to see how they appeared on the lips?  This is all it would have taken to realize that, no “fixed” and “mixed” don’t look remotely the same on the lips.  There are plenty of other words and even entire phrases that can be mixed up with each other by a lipreader, even a skilled one.  But “fixed” and “mixed” and the other pairs of words the author chose throughout this scene were not among them.

But this.  This was only irksome.  What was much more upsetting than this relatively minor inaccuracy was reading about how Flossie and her mother responded to the little deaf girl saying she was mixed up.  Did they help her so she would be less frustrated?  Did they repeat themselves so she wouldn’t be mixed up any more?  Did they start using gestures more, or drawing pictures to help her understand what they were saying?  The girl was old enough that perhaps she had started to read a little–did they try to see if it might help for Flossie’s mother to write down what she was saying?  No, they didn’t.  Instead, they laughed, and did nothing to help.  They laughed and I wanted to crawl into the book and start hurting them the best way I knew how, by kicking and scratching at them.  And then I wanted to go find the author who had written that horrible scene, who had made two characters who I was supposed to like and admire be so mean to a little girl like me.  I wanted to kick and scratch at the author, too.

Slowly and reluctantly,  after talking with my parents about the book, I started to understand.  No, the little girl’s deafness wasn’t there for me.  No, she wasn’t there so I could have someone to relate to, to make it easier to imagine myself inside the story.  No.  The point of this scene was to achieve what was meant to be a humorous effect for hearing readers.  See how funny these communication difficulties are?

Here I am in a book.  For the very first time in my entire life.  And the only point of having me there, as far as the author was concerned, was so others could laugh at me, at a little girl like me having trouble understanding what Flossie’s mother said.

Can you picture the devastation I felt then?  Can you understand how this impacts me even now, 35 years later?  Can you understand now why I still crave deaf characters in fiction, want them, need them?  Can you understand now why I also want to see other characters with any other disabilities in fiction, even if they don’t share the exact same disabilities that I do?  And why, despite my desire, I still so frequently cringe when I see that a book, or a TV program, or a movie is going to feature a character with disabilities?  Because as much as I still need to see me in fiction, I also don’t want to be hurt yet again by stereotyped depictions of people “like me”?  Sometimes I pass over a book that clearly has a character with a disability because I’m so afraid of what I’ll find when I open it.  And yet, as afraid as I am, sooner or later, I always come back and read it after all.  Because when there are so very few people “like me” in fiction, how can I not?

Edited to add: A reader, Jamie Berke, helped me identify the title of the book referenced above as being probably “The Bobbsey Twins in Echo Valley #36. Because I had read this more than 35 years ago, I couldn’t remember the title on my own. This volume apparently is no longer available in modern reprint, only as a collectible. Thanks, Jamie, for your research skills!)

Do you understand now, what the TV program Switched At Birth means to me as a Deaf woman?  This is the first TV program to have multiple characters who are Deaf, like me.  No, the show isn’t always perfect.  But, the authors and directors are clearly trying very hard.  And a lot of the time, they do get it right.  And because so many of their deaf characters have important story lines in their own right (and not just as side kicks), I can place a little more trust that eventually something they get wrong today might get “fixed” or countered by something else done better later on.  This is the first time I have been able to tune into a TV program and trust that, at some point in the hour that follows, something will happen that will resonate with me in a way I don’t experience with any other TV program.

This is also much of why I am so excited about their first-ever all-silent, all-ASL/subtitled episode that will air this Monday, March 4, 2013.  This probably also is why there are Deaf people across the nation planning special viewing parties just to watch this episode together (if this is you, be sure to tell @NADTweets via twitter!)

Please do read some blog posts written by other people who also care about seeing “people like them” in fiction.  Because this is something that MANY of us care deeply about.  Not just deaf people, or people with disabilities, but also people of color, people who are poor, people who are GLBTIQA, and probably many other characteristics I haven’t mentioned in this post.

I am constantly re-blogging Tumblr posts from other people that relate in some way to the importance of representation in popular culture.  I particularly tend to re-blog things related to disability representation, but I also re-blog things related to people of color representation, LGBITQA representation, and so forth. You can find a collection of these under the representation tag at my Tumblr blog, and other related tags.

I used to have a collection of links right here at the bottom of this post to things other people have said about why representation in media is so important to them.  But then the collection kept getting longer and longer until I finally decided it was time to put all the links together in a page on their own  You can check them out at Blog Posts on Why Representation Matters.