It’s snowing. In New York City. Right now.
“Look Daddy! It’s snowing!” Em said this morning.
There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child. (This is less a criticism of us and more a statement of fact to illustrate a larger point.)
“Em, do you know who the president of the United States is?”
“Yes,” she spelled out.
“What is our president’s name?” I asked.
“Barak Obama,” she spelled.
“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.
“Yes,” she spelled again.
“What is the name of our vice president?” I asked.
“Biden,” she wrote matter-of-factly.
“Communication is the most essential use to which spelling should be devoted. It should not be used as a test or an exhibition piece. Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas. If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication. Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out
This is what we are striving toward. Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of. I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them. I write about how important it is to treat all people as equal. I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged. And yet I underestimate my child’s ability constantly and without meaning to.
On a daily basis she writes something that blows my mind. EVERY DAY. Read that again. Every. Single. Day. It’s like living in an alternate universe. Every day I feel excited to know what the day will bring. Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude. Every day I think, will I ever stop being surprised? How long will it take? I don’t know. But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in all that is my daughter. I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so. Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.
Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”
Emma spelled out, “Lets say leaf blower.”
My smile was like the Cheshire Cat’s, from ear to ear. Leaf blower? I LOVE that! And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.
“Until I could prove that they were intelligent nobody would come and assess them. Guilty until proved innocent. The children were profoundly and hopelessly retarded until they could prove they were intelligent.” ~ Rosemary Crossley from Annie’s Coming Out
“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…” ~ Rosemary Crossley from Annie’s Coming Out
My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is. We are at the very beginning with all of this. There are others who are far ahead of us, those who have published their thoughts, with more being published all the time. Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.
“This was one of our standard problems: people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them. It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them. How do you talk to someone who tells you that they are convinced that you cannot talk? What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out
We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics. We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of. My daughter is but one of a great many. As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in the insulting position of having to prove their vast intelligence, and themselves, to anyone.
Rosemary Crossley and Anne McDonald
This was during the 8o’s when magazines like Elle gave editors like me a car and driver. Remember this is New York City where having a car and driver at your disposal is something people only dream of. It was at a time when CBGB’s reigned and Studio 54 was a place many of us had danced in. The meatpacking district was still used to slaughter meat and transvestites and transexuals hung out just west of it on the edges of the Hudson River. Times Square was considered squalid by most and Nell’s Nightclub was in full swing.
Emma's Hope Book 