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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!

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 Interveners

This year Oona has an intervener (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/accessibility rights, but I just wanted to explain more for the benefit of a general audience.

The intervener 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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