Live From The ICI Conference In Syracuse!

IbYesterday began with Ibby, as any proper day should.  Ib, assistant professor, blogger, activist, advocate and all around amazing human being, gave the keynote opening day address at the Institute on Communication and Inclusion here in Syracuse.  The room was packed.  Everywhere you looked people milled about from all over the country, ranging in age from under ten years to over seventy.  Some sat in wheelchairs, others moved their bodies back and forth, from side to side, some quickly in staccato gestures, others more slowly and rhythmically. Verbal utterances were not cause for stares or frowns, this was not a “quiet room” but a room filled with the sound of human beings in all their vibrant diversity, being themselves without censorship, without admonishment.  You can’t go to a conference like this and not get swept up in the beauty of unedited human beings being.

Ib & SteveJust prior to Ibby’s address I met the wonderfully talented, Stephen Kuusisto of the blog Planet of the Blind. Steve is a poet, author, professor, disability advocate and Fulbright Scholar.  Douglas Biklen, Dean of the School of Education at Syracuse University introduced us. This is Doug’s final conference as acting Dean and so I am particularly grateful to be here before he leaves.

This photo of Ibby and Steve Kuusisto was taken during Amy Sequenzia, Ibby and my presentation, “Blogging to Communicate.”

RosieAfter the keynote, we went to our “Hands-On Skill Building Workshop” with Rosemary Crossley.  Rosie is the one who developed facilitated typing more than 30 years ago in Australia, so I was very eager to meet her, finally.  Rosie went around the room and asked people to introduce themselves.  When she came to Emma, Em sat up and said loudly, “I don’t want to type!  My name is Emma.” To which Rosie said, “Oh! Hello Emma, how old are you?”  Em responded with, “I’m nine.” (Em is actually eleven, but tells people she’s nine, when asked.)  “Have you ever been to Australia?” Rosie asked.  “Yes!” Em answered. This time, however Rosie had a small machine that she held with a “yes” and “no” button on it and a laminated square with the words “yes” and “no”.  “Have you been to Australia?” she asked again.  This time Em, without hesitation pressed the “no” button.  A little later Rosie came and sat next to Emma and asked, “What’s your favorite color?”  While supporting Emma’s elbow, lightly with one hand, Em typed, “Pink.  What’s yours?” Then Em astonished me by continuing to type, “I hate yellow.”  Hate?  Seriously?  I hate yellow too, but really, I had no idea my daughter hated anything, much less a color!  Presume competence.  I’m going to reread that post I wrote…

RalphLater in the day Ralph Savarese and Steve Kuusisto presented on “Autism, the Brain and Poetic Creativity”  where they led participants in a poetry writing workshop.  After which Emma typed to Pascal, “really am telling my sameness self that its good to find different ways to that things and watching Ralph is fun.”  So there you go, Ralph.  A solid endorsement from Em.

Amy Sequenzia gave a personal and moving presentation about blogging and why she blogs, followed by me and then Ib who also spoke about why blogging is such a terrific platform, not least of all because it is interactive and immediate.  Ib then opened our presentation up for questions and comments and then…

Ib, Amy & Ariane

well, and then Em indicated that she’d like to say a few words, so Ib introduced her and Em took over, beginning with – “Ladies and Gentleman…” and ending with a list of all the various doctors, therapists, and people we once took her to see, followed by a list of all the people who now help us.  “Now we have Pascal and Harvey and Ibby and Ibbia (because Ibby has been given her own country, apparently) and Soma…”   Take it away Em!

It's the Em show

*I have to interrupt this post as I have to get to Anne Donnellan’s keynote starting in 30 minutes.  Peyton and Dianne Goddard sent me a copy of Anne’s book two weeks ago and I’ve been carrying it with me ever since.  So when I ran into Anne yesterday I pulled it out and showed it to her.  She is lovely and I cannot wait to hear her.  More to come!

One last photo though before I leave you…

Me with Amy and Ib – you guys rock!

Me, Amy & Ib


14 responses to “Live From The ICI Conference In Syracuse!

  1. Ohhh this is so exciting, so lovely and I wish I were there. Be well all of you andddd Listen to Emma.

  2. I think we all need to occasionally remind ourselves to presume competence. “Ibbia” is so funny. Everyone deserves their own country, I guess. Thanks also for the reminder that what comes out of our kiddo’s mouths is not necessarily accurate (Australia?). I was just talking about this with my mom yesterday about Nathan. He tends to say things that don’t really make sense, especially when he gets upset. The other day he was “complaining” (verbally but without words). I asked him “What do you want?” (this sometimes gets him to focus enough to use some words to tell me what he needs). He said, “I want popcorn”. He didn’t. I checked.
    Anyway, looks like an awesome conference. I’m glad that Em got to go and to participate!

  3. this was great! I am getting to see your workshop after all now!

  4. I would love for the world and not just this conference to be a place that embraces people’s differences.

  5. Emma hates yellow? Well I’ll be darned. I soooooo wish I was there with you all. I’m missing out on so much wonderful stuff!

  6. Going to a conference like this show how special these kids are

  7. Thanks so much. I feel as if I am right there with all of you – and it feels wonderful!!!

  8. Thank you for sharing this. Please promose to let me know the next time one of these conferences happens. I would love to be there – I would love for the kids to see the many different ways people communicate!! xx

  9. Warm fuzzies!!! 🙂

  10. carissamatsushima


    Carissa here, I’m on awesome boy Nick Renino’s awesome team and we sat together at Emma and Nick’s breakfast conversation at Rachel’s. I’ve been reading your posts about the conference and I am so grateful that you’ve put words to such an inspiring and overwhelming experience. Being so new to the community of (mostly) non-speaking communicators, I have so many thoughts and so few words. Thank you for your insight, and your post about Nick’s blog was so heart-warming. Until next time! All my best!

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