For those of you who have not viewed the interview of Carly Fleishman, you should: Autistic Teen Finds Inner Voice. (There is a 15 second ad that you must cope with, but the interview is well worth the annoyance of the ad.)
The clip is an amazing example of a severely autistic non-verbal teenager who finds a way to “speak” by typing on her computer. What occurs as a result is profound with far-reaching implications for all of us.
A follower of EmmasHopeBook, an English teacher of 7th graders, and I have been engaged in a “cyber conversation” regarding disabilities, “tolerance”, how we view intelligence etc. She wrote me this morning regarding her english class: “We’ve also been discussing the semantics of disability (and earlier in the year, racism and homophobia). The word “tolerance” has come up in class, and the kids actually hypothesized and agreed that it’s just not strong enough for the world they want to live in. There were some strong voices saying that they feel it is actually negative! One girl said that, to her, to “tolerate” someone or something means “OK, I’ll put up with this if I have to, not because I want to,” and then they universally decided that the ultimate goal they should be pursuing and activating for is something like equality, or, as the same girl put it “It’s something like ’embrace-ness-ness.’ ”
I love this. We live in a world, populated by people whom we often judge. We tend to come up with ideas about other people and the lives they live. The unknown can be uncomfortable and so we draw conclusions and then behave as though these conclusions were facts. Someone cannot speak and we conclude they’re intelligence is lower than those who can. A person is disabled and we conclude their intelligence is disabled as well. How can we embrace what we do not know or understand? It can be a frightening prospect and yet it is the key to a better understanding.
When my father finally succumbed to a wheel chair, having had a debilitating accident in his 40’s he was treated differently. People condescended to him, they felt sorry for him. He was a proud man, who at one time was extremely athletic. Being in a wheel chair changed him. He became despondent, he hated how he perceived people were viewing him – with pity.
When we are out with Emma, people at first believe her to be a “normal” little girl. But once they speak to her or are with her for an extended period of time, they begin to realize she is different. Usually they have no idea what is “wrong”, but the way they behave changes ever so slightly. Sometimes they’ll raise their voice or their tone will change. They clip their sentences, they speak as one might to an animal. (I have been guilty of many of these things, by the way.) It is confusing to be confronted with a child who looks neuro-typical, but who clearly is not.
I wish I could inhabit Emma for a day so I could feel and know what it is to be her. Would I treat her differently if I knew what it was like to be her? I hold onto the idea that if I continue working with her on her reading and writing, one day she’ll be able to tell me.
Last night as I lay beside Emma reading to her, she began laughing. I put the book I was reading down and said, “What’s so funny, Em?”
“Crash into foof!” she said, breaking into hysterical giggles.
“Did you do that at school?”
“That sounds like fun,” I said. Emma was silent. “Do you want me to keep reading?”
After I finished reading about our moon landing in 1969, I said, “One day Em, you’re going to be able to read and write. I can’t wait to read and hear what you’ll say.”
“Go to the computer with Mommy and Daddy,” Emma said.
“Is it easier to communicate on the computer?” I asked.
“Yes. Computer with Mommy and Daddy,” she said.
“Okay. We’re going to work on that,” I said.
“Mommy sing song?”
“Right. I’ll sing you a lullabye.” After I sang her a few songs I hugged her. “I love you Em.”
“So much,” she said.
For more on Emma’s journey through a childhood of autism go to: EmmasHopeBook
Your father once said to me that one of the hardest things about being in a wheelchair was that any sort of party or gathering, strangers would avoid speaking to him, and he surmised that it was because they didn’t know what to say to someone who, to them, was not “normal”.
When I first saw Amanda Boxtel in her wheelchair at a large party, I immediately gravitated to her remembering what Victor had told me. She is one of the “angels” in my life, in that I look at the world differently because of her.
And of course your father was the earlier “angel” because he started me on the lengthy path of trying to see the world through someoneelse’s eyes.
Tolerance is indeed a very faulty word. I have tried to think and act in terms of understanding instead, but I think I’ll switch now to embrace-ness-ness.
Do you know the story of the India guru who asked his two disciples “when does the dawn begin?” and the first, who came from the snowy mountains said that it was when the sun started to sparkle on the snowflakes; and the second, who came from the south, said it was when the drops of dew reflected a myriad colors of the rainbow. But the guru answered: “No, it is when people come together from opposite ends of the world, and call each other brother and sister, and they embrace. That is when the dawn begins”.
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