I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels. I am only on page 51, but wow(!) what a book! Barb is Autistic. She also happens to be non-speaking and needs support doing almost everything including communicating. Barb uses facilitated communication to type. In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand. The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing. This infuriates me…”
For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back. In October of last year I went to a presentation given by Barb and Lois. It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not. Barb wears thick glasses and uses an oversized keyboard to type. She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones; this book is a joy to read. She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.
Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different. Barb writes, “Let me be brutally honest. Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” Breathe. Read that again. “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” “You.” Take a breath and let that in. “Children who grew up to be you.”
Confession: I am in second grade. There is a little girl named Louise who wants to be my friend. She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not. I am the new kid. I am well aware of the unspoken rules of the playground. You do not hold Louise’s hand. You do not allow yourself to be seen with Louise. You distance yourself. You play alone if need be. To be seen with Louise is to be like Louise. Flawed, with warts for all to see. Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak. I lie about my family, I lie and say we lived in a field with a house made of straw. I told these lies because I thought they made me seem exotic and fascinating. I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.
Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them. At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.” This book (and again I am only on page 51) made me stop and reflect on my own behavior. Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe? Do I make assumptions? Do I hold beliefs about others because of the way they appear? What are my hidden prejudices? Am I able to admit to them? Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?
“Am I so different from any of you?” Barb asks.