Looking through his 2011 emails to my old school, Dad found an email I’d like to address. Dad wrote:
“On 2-22 he talked about the seizures he has been having. That day, he also conceived that he might have a voice independent of the facilitator’s. Until then, he thought that without a facilitator he had no voice…that the facilitator was a necessary part of his communication. He’s now open that that might not be true, and the last words underlined he typed without any support. He’s excited about learning about computers. And Laura’s fading is connected with his growing understanding of freedom and a unique voice.”
The “he” Dad is talking about is me, John Smyth. At this point I had been typing since December 10, 2010 for 2 or 3 times per week. It was an exciting time. Here are my reflections of that time to Dad:
A Response to Dad
Really when early in typing, serious questions existed for me about how easily I might wake to a world where my voice was gone again. In many ways, it was too good to be true after all those years and after so much hopelessness. It was hard for me to hope again. Starting with school and the work and cost of getting at the typing, I wasn’t sure it would be supported to continue. So many different people had come and gone from my life, and so many things tried, that I wasn’t sure you believed Poorman’s ability enough to give me a chance to grow and prove myself. I knew it was real and I could have my voice. I didn’t know about the politics, cost, support or work you were willing to invest. To me, it was my life, but didn’t necessarily have the highest priority. I was out of control. I needed to show you and I was torn.
There is a real comfort to being noncommunicative. No one really knows your world. There is complete privacy. But the isolation and power of communication can quickly overcome the benefits of that privacy. I learned that power in time. My experience of being prodded and encouraged to type comforted me. It was important to be welcomed rather than considered incompetent from the beginning. It’s hard to stand for your own competence when you’re also giving up your privacy and some of the games you can play. I liked the choice of life. Poorman and you made me welcome.
An Encouragement to Parents
I pretend I would still be ok, but the truth is that I would be dead and buried alive without supported typing, and I know there are many kids just like me who just need a chance. How would it be for you if someone else called you incompetent and no one would stand up to give you a chance? Forget the naysayers and be a parent. Give this a chance and open a window of hope.