not her words

No, I haven’t read that new autism book yet. No, I didn’t watch that special on autism last night. No, I don’t have an opinion on that article that you sent me three days ago. Why? Because I don’t have the bandwidth for it right now.

I just don’t. I can’t. It’s too much.

My dear friend, M, and I have been talking a lot about a new book that he read recently on the history of autism. About the fact that he felt that the authors of the book have a bias that they don’t acknowledge therein. That it seemed that there was an assumption that readers would automatically agree that pretty much any and all autistic traits are just sort of, well, wrong and that conquering / changing / hiding / eradicating them is therefore always right.

In our conversation yesterday, I said, “Im guessing they don’t acknowledge the bias because they don’t have the slightest idea that they have it.”

Ableism, the notion that being non-disabled is better than being disabled, that a normative life experience is somehow more fulfilling than a divergent one, is so deeply embedded in everything we do that we tend not to challenge our own ideas based upon those assumptions. We just operate on the premise that that no one could possibly want to be disabled.

(Note: I haven’t yet read the book because, well, see above. If you are so inclined you can read M’s review of it along with an interesting conversation in the comments here.)

Last night, I had a really odd dream.

Luau, Brooke and I were walking through a hotel and we stumbled upon a fundraiser for an autism charity. We stayed by the door to listen for a moment, and I got sucked in to what they were saying.

They were talking about how they were focusing their work on the autistic individual. They didn’t say that, though. They never seem to be willing to say that. Heaven forbid they respect the use of identity-first language as a proud statement of identity and community and culture.  As an acknowledgement that autism colors every conceivable part of these people’s lives. That it is an intrinsic, intractable part of who they are, the filter through which they experience and interact with the world. That while it can indeed be disabling, it can also be beautiful.

“People with autism,” they say instead, because the idea that being non-disabled is simply better than being disabled, that a normative life experience is somehow more fulfilling than a divergent one is so deeply embedded that we tend not to challenge our own ideas based upon those assumptions. We just operate on the premise that that no one could possibly want to be disabled.

I realized that I’d been listening so intently that I’d lost Brooke. I panicked momentarily, and then exhaled when I saw her on the other side of the room. A woman was talking to her. She was nodding her head as she took in her words.

“But wait,” I said to the speaker at the front of the room (surprising myself in the process), “There was a man named Jan who …” (apparently there was an allusion to Jan Werner in my dream. At least Sean Penn didn’t show up to interview anyone.)

The woman at the front of the room cut me off mid-sentence, apparently too excited to let me finish. “That’s right!,” she shouted as if I’d just agreed to order a one year supply of Mary Kay and she was well on her way to driving that iconic pink Cadillac. “Aaaaaaand, I’m so glad you said that because … HERE! HE! IS!”

The man, this Jan, was apparently a hero in this crowd. They were thrilled that he was there. He stepped to the front of the room and took the microphone. And then he said, “Why let me do the talking? Let’s hear from this beautiful young lady, shall we?”

I watched Brooke take the stage, looking back at the woman with whom she’d been speaking. She prompted her forward.

Brooke began to speak. She was wearing a white, billowy dress. I remember buying that dress. It doesn’t fit her anymore. It’s far too small. She’s grown so much since the time when it fit.

“I have autism,” she said. In just three words, I knew that what Brooke was about to say was not her own. Those aren’t words that Brooke uses. “I am autistic,” is what she would have said if she were speaking for herself.

“I am broken because I’m different and different is wrong,” she said.

My heart raced and my throat was suddenly hot and dry. I watched Brooke look over at the woman. She smiled at her encouragingly. “You’re doing great!” she whispered.

“But I’m learning how to be ….”

I ran as fast as my legs would take me and reached my girl before she could be fed or parrot another word. I scooped her off of her feet and into the air. She extended her arms in front of her and squealed that delicious, happy, stimmy squeal that is as much a part of her as her long, brown hair and breathtaking golden-brown eyes. I flew her like Superman around the room as I yelled, “… exactly who you are! Perfect and unique and beautiful and YOUUUUUUU!”

I dipped her and she laughed. Oh, that laugh.

“And autistic!” she yelled.

“And autistic!” I echoed as I flew my girl right out of the room.

No, I haven’t read that new autism book yet. No, I didn’t watch that special on autism last night. No, I don’t have an opinion on that article that you sent me three days ago. Why? Because I don’t have the bandwidth for it right now.

I just don’t. I can’t. It’s too much. 

6 thoughts on “not her words

  1. This was heartbreaking until you rescued Brooke from the woman in your dream. I know the woman is basically a metaphor but, in reality, it’s scarier than hell.

    Love you,
    Mom

  2. thank you. my 17 year old son is dealing with some depression. i read your post this morning and it changed how i prayed for/with him before he left for school. instead of asking that he not feel sad or depressed or angry, i asked that when he does that he feels God very present in him and that he feels how much i love him.

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