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Welcome to the Oonaverse…

all you need is glove

Greetings, earthlings. This is Oona’s mom Sara, writing dispatches from the Oonaverse. Oona is a 7-year-old DeafBlind child with CHARGE syndrome. I hope that sharing our journey with the world will be helpful to other families, and also build community. I write about a broad range of topics that affect Oona’s opportunities and quality of life here in the Oonaverse, including education policy, sign language, health services, disability justice, etc. I hope you enjoy the blog. Please comment and write me a note in the “contact” section!

More than just a seat at the table

How can we apply Pro-Tactile philosophy to social mealtimes with our DeafBlind kids?

Two 7-year-old girls sit on adjacent but different sides of a rectangular table, about 2.5 feet away from each other, eating mini ice cream cones. Kamirah (Deaf-sighted) is on the right and she is looking at the camera and smiling and flashing a cool kid v sign. Oona (DeafBlind) is on the left of the frame, she is eating her ice cream and looking straight ahead of her, unaware that the photo is being taken.
Oona and Kamirah sit on adjacent sides of a rectangular table, eating mini ice cream cones.

This month I am taking an online course on Pro-Tactile philosophy with DeafBlind poet and community leader John Lee Clark. If you read my earlier post introducing Pro-Tactile American Sign Language, then you may recall that I enthusiastically recommended his autobiographical work Where I Stand: On the Signing Community and my DeafBlind Experience (Handtype Press, 2014) as an introduction to DeafBlind culture. Check out this glowing review by deaf sci-fi author Kristen Ringman.

Back to the topic at hand: how do we convene at the dinner table, or any seated conversational space, with our DeafBlind kids? So often, the physical dimensions and layout of conventional sitting furniture make it difficult for DeafBlind people to maintain tactile contact even with the person sitting right next to them – let alone being able to touch everyone gathered around the table! This is just one of the many lessons I learned from our first reading in John Lee Clark’s Pro-tactile philosophy class: his essay entitled “My Dream House.”

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Ideal communication vs possible communication

Martelle interprets during story time by signing hand under hand with Oona. Martelle is seated on the left. He is a muscular dark skinned man with short hair, wearing a black shirt and jeans. One of his arms is raised in the sign for tree and the other hand is across his body touching the tree. Oona is wearing a yellow dress and white sweater. She is sitting across from Martelle with one hand feeling the tree sign and the other hand tracking his arm that is indicating towards the tree. This is a blurry still from a phone video.
Martelle interprets during story time by signing hand under hand with Oona. Sorry for the blurry quality – it’s a still taken from a phone video.

I want to start this post with a caveat that I’m not a linguist, I’m not Deaf or DeafBlind myself, and I’ve barely scratched the surface of the incredible array of vlogs, blogs, and social media where Deaf and DeafBlind advocates share their knowledge. This is to say: I want to pay homage to others who have undoubtedly written on this topic from a far more authoritative personal and/or academic perspective. I hope to discover and learn from your work. My small contribution here derives from my observation of my child, and perhaps my motivation to explain things to other hearing people given how recently I came to understand so much of this myself. I hope that sharing my thoughts on this topic is helpful to other hearing caregivers of Deaf and DeafBlind children.

So, “ideal communication” and “possible communication” are not textbook terms. They are just two terms that I made up, although other people likely use them in different communication-related contexts or perhaps even the same sign language context that I’m going to apply them to. Here are my definitions: “possible communication” takes place when either the language itself or a given modality (visual, auditory, tactile) CAN be understood and managed by a given person in a given space, but it presents various limitations for them. “Ideal communication” happens when the language and/or its modality is enabling someone to access maximum information and human connection in a given space.

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Children who don’t sign back

To put it simply: We keep signing with Oona because it makes her happy.

Image description: two DeafBlind children between the ages of 6 and 8 hold hands and walk together, sharing a moment of tactile bonding. Their arms are locked and they are turned towards each other a bit with their whole upper arms touching. They are both wearing orange shirts and glasses. The child on the right is holding the hand of his babysitter who is walking a little bit in front of them and smiling looking back at them.

The other day I was with Oona at a playground next to the woods of Sligo Creek. It was dusk and no one else was out… just us, the snow on the ground from Friday, and the creek gurgling in the background. For some reason I suddenly had very clear thoughts on why I sign with my kid – and why I insist that she be in a sign language education environment – even when she doesn’t sign back.

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Pro-Tactile ASL

How do people with combined vision and hearing loss communicate with each other? Through touch!

What is Pro-Tactile American Sign Language?

Pro-Tactile ASL is now considered a distinct language from ASL, which DeafBlind activists started referring to as “Visual ASL” or VASL, in order emphasize the different modalities of the languages. The Pro-Tactile movement is not just a language movement but also a holistic philosophy of DeafBlind autonomy and community-building. The Pro-Tactile movement believes that DeafBlind people are empowered through community with other DeafBind people, and the natural language most easily shared by the community is tactile sign language.

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On DeafBlind Intervenors

This year Oona has an intervenor (educational aide, with a skillset specific to the child’s needs) who identifies herself as DeafBlind. She is a graduate of Gallaudet who is Deaf with close vision, as a result of Usher’s Syndrome, a condition that involves progressive vision loss. In the DeafBlind community people avoid emphasizing medical diagnoses and focus instead on collective language rights, but I just wanted to explain more for the benefit of a general audience.

The intervenor herself has to be accommodated in the classroom, such as by tapping her to get her attention or making sure to sign in her range of vision, so the entire classroom space has become more competent towards low-vision ASL accessibility. I have observed that, in the short 2 months that she has been working with Oona, Oona started to sign much more.

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