Tuesday night I received a message from Jess of the blog – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN. She asked me if I’d be able to step in if she still felt awful Wednesday morning. I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.
Fade to the following day.
Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans. So we wait to hear from him and I go about my day, trying as best I can to not think about it.
Three hours before the event I was able to check my email and see that I’d been given the green light. I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea. Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?” An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.
We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn. After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance. Emma wrote, “I am aware of many things, and so are you. Acceptance takes more dedication.” I paused and then turned to Emma and said, “Do you have anything else you’d like to add?” I held her stencil board and gave her a pencil. Emma wrote, saying each letter as it was pointed to, “Yes. Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”
I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded. And because we thought the whole thing was being recorded we didn’t bother taking any still shots either. So other than a few photographs of Ari, we got nothing. (Insert sad emoticon.)
Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t. And if I’m right then it was worth every second.
PS Jess, I’m hoping you’re feeling better.