Three Haikus By Emma Zurcher-Long for #AutismPositivity2014
*Emma writes by typing on a bluetooth qwerty keyboard attached to her iPad. For more about the way Emma communicates, read – How we Got Here
My writing blossoms
greeting welcoming smiles of
Green with envy you
strain to jump as far and high
daring to come close.
Lashing down, I run
to find shelter but there’s none,
laughter, roaming, I stay.
As the parent to a child who has been described as “verbal” but who was thought to be unable to understand much of what was said to her because she could not answer with spoken language questions such as, “How old are you?” I will never be able to adequately describe what it is like to read my daughter’s words.
This blog began as a document of hope for our daughter, but it has evolved to become a message of hope to parents who feel the kind of despair and terror I once did. As Emma wrote, “I am smarter than most people think. So many kids are just like me.”
My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).
As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.
Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)
I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.
This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.
“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –
“Autistic people are not viewed as able beings, this view makes us suffer.”
After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…
Yesterday, during Emma’s RPM session (not with me, but with the person who does weekly RPM sessions with her) she was asked to talk about something where she compared and contrasted.
Emma wrote the following…
“Part of All Buildings”
“For thousands of years and as long as buildings have existed, walls are covered.
“Generational trends have shifted. The idea of paint versus wallpaper is one to give attention to. Ask yourself what has changed in trends. Did you ever think to believe the walls around you influenced change?
“Wallpaper with precious patterns are torn apart in many current buildings. Paint has won the walls of this generation.
“If you believe your environment can change parts of you, keep reading.
“I am wondering if those who surround themselves with precious patterns have bigger imaginations than those with simple paint. It is easier to become friends with colorful patterns.
“They can both get dirty. In wallpaper the wear becomes welcomed more.
Emma and I discussed yesterday’s post and I asked her what she thought of the way I’ve described her as an “unreliable speaker.” I haven’t liked how negative that sounds, though I have meant it more factually, and was not suggesting anything beyond those exact words. She wrote, “Yes, unreliable. Mostly talking other words even though not what I think.”
We discussed the comments many have written about believing her and how today is, for many, a day celebrating gratitude. I told her how grateful I was to be able to communicate with her. She told me I could post some of what she wrote in response…
“Decade of ignorance dead. Deny ideas of intelligence can directly minimize the amount of self-worth one feels. I am grateful many are believing in me.”
Happy Thanksgiving everyone!
This photograph of Emma was taken outside my old studio by Jackie Maillis. Thanks Jackie!