“People do not believe me” was what Emma wrote on our last day in Texas last week. Prior to that sentence she wrote a message to Richard and me that left me in tears because it expressed her gratitude for believing in her and for fighting for her right to be thought competent and intelligent.
One day my daughter will be able to write what she feels and believes independently, of this I have absolutely no doubt. When that day occurs, she can choose what and when she wants to write such things, but for now, I will keep this post to my own views and opinions.
As many of you know, it was not so very long ago that I was one of those people Emma was referring to. I have a great many feelings as I write that sentence, but as I trace back what was going on and why I didn’t or couldn’t or wouldn’t believe in all, that it turns out, she is capable of, it wasn’t that I didn’t want to, it wasn’t that I didn’t hope, it was that everything I saw, heard and thought was muddied by what I read and was told and was confirmed by what I thought I was seeing.
When I met people face to face (as opposed to reading their words or hearing of them) like Barb Rentenbach, Tracy Thresher, Larry Bissonnette, Amy Sequenzia, young Nick, Joey, Jamie, Jenn, Mark, Tito, Sarah and countless others who do not speak, or whose spoken utterances are not in keeping with what they write, I began to question what I once believed. It was during a presentation Barb Rentenbach and Lois Prislovsky gave at the Autcom Conference in the fall of 2012 that I thought, okay, maybe, just maybe, my daughter is not saying what she intends to say. At that same conference I went to another presentation with Larry Bissonnette, Tracy Thresher, Pascal Cheng, Harvey Lavoy where a young boy, younger than Emma, typed on his iPad extremely insightful comments pertaining to the topic and again I thought, maybe, just maybe my daughter is like that boy and I just have to find a way to help her communicate.
It was the first time I’d really considered the disconnect between speech and intent. It was the first time I began to wonder whether all this energy being placed on output of spoken language was the best way to help her communicate. You see, up until then I bought into the idea that if we could just get her to talk, we would be giving her the tools she needed to say what she thought, that the words that came out of her mouth were indicative of what was going on in her mind. We even would give her spoken prompts, say a sentence and have her repeat it, as though if she could just repeat the words, even though they were dictated and not her words, they would make sense and the connections would be made. And when they didn’t seem to build to a critical mass, instead of questioning the push for spoken output, I questioned what was going on in her brain.
This was a huge mistake, it turns out. Huge. But I didn’t understand. I didn’t see the error in this thinking. I could not believe. Not yet.
And then I met these wonderfully resilient, creative, intelligent people who did not communicate through spoken words, but instead wrote beautifully, poetic words that put together made equally gorgeous sentences that spoke of insights and wisdom and hope and strength and courage and compassion and I was blown away. At first I thought each person was an anomaly. I told myself they couldn’t possibly be representative of many, they had to be one in a million… and then I met more and more and eventually, even I could no longer doubt what I was seeing and witnessing, this critical mass… this unleashing of hundreds of voices, each unique and yet all…. all were communicating what was in their minds and many spoke of that disconnect that occurred between a thought and what then came out of their mouths.
“my mouth constantly talks different from what I think…” Emma wrote.
“People do not believe me.”
“Yes,” I told her, “but that is changing… that will change.”
It is my promise to my daughter. I will not stop writing until it is no longer necessary to say these things.
Lois Prislovsky, Barb Rentenbach and Emma
Emma's Hope Book 