Transcript of Untitled - A Video by Estee Klar

Narrated by Estee Klar

A rhythmic breathing noise repeats.

I think that’s where it started. He was always engaging, just not in the ways that the therapist said nah-ah!, sit down, look me here in the eye, do this, say book, say B, then you can have this book.

A young child squeals.

Narrator: But because now I’m looking at those videos and I’m seeing them stopping every bit of flow that he has and that he can muster. Every word that he has to muster has a huge labour to it. For their satisfaction. There’s just so much going on that he’s able to do. But they disable him.

Rhythmic breathing.

Narrator: When I’m supporting Adam, I feel that I have to drain myself. And just focus like a metronome, a human metronome, and just focus on the rhythm. There’s also many other rhythms going on in the room that I’m very aware of simultaneously. But in order for him to be able to do that labour of just… getting out text to prove his competence, which I find so problematic. His movements always need to be translated, and that’s problematic too. So, how do I… how do I manage, and, and, all of that… stuff.

The rhythmic breathing stops.

Narrator: It’s a bit, anxious.

The rhythmic breathing begins again.

Narrator: I think we’re also living in a system that doesn’t support me, in what I do. It blames me. I think about that all the time, there’s just so much time managing, be it, you know, schools and their paperwork and their IEPs, and you know, and has he reached these goals? And all of these linear timelines and nothing happens like that in real life for our situation. It happens up here, down here, it’s never this straight line. It’s, it’s like the stare, it’s being stared at all the time. You’re always in the public eye in one way shape or form. And that’s – you feel that eye, and that’s such a pressure. It’s a pressure to resist, and manage that. And it takes a lot of time.

The rhythmic breathing stops and then starts again.

Narrator: And yet Adam says, that thinking, he can think when he moves. Thinking is a feeling in a body that is always moving. And he’s told to sit still. And that’s the only way that he’s permitted to think. It’s still engaging with. Maybe. And that’s why people think it’s unrelational, non-relational, because it’s moving around, and it’s moving through, and it’s not necessarily making this eye contact and all of these expectations that if we’re doing the same thing… then we’re relating. But he’s doing it around you, and around the room… and with all the other people in the room.

Adam (typing): Social change is the key.

Adam speaking repetitively. The words are indistinct.