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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!

Monthly Roundup: October

Three awesome disabled people and their art.

Sometimes I have too many tabs open on my internet browser because I can’t bring myself to close out the uplifting stories I enjoyed reading so much. So I decided to start doing this periodic roundup of articles on disabled people doing cool stuff… I will dedicate a post to celebrating those open tabs lingering in my heart, mind, and desktop at the end of each month. The articles are not necessarily published recently – I just happened to read or revisit them at this time. This roundup features DeafBlind dance instructor Kerry Thompson, Blind skateboarder Dan Mancina, and a doll-maker with vitiligo named João Stanganelli. Each person uses their art and performance to empower themselves and others. Keep scrolling to get to the featured articles!

João Stanganelli sits on a couch, smiling at the camera and displaying 4 of the dolls he made by hand. He is an older man in his 60s, with a gray beard, gray hair, and reading glasses propped on his head. He has olive skin with pink vitiligo patches on his face. The dolls are children with a range of skin tones and hair colors, each with link vitiligo patches on their faces and bodies.

When he had to stop working due to a heart problem, grandfather João Stanganelli decided to learn how to crochet. Initially, he wanted to do something special for his granddaughter by making her a doll. He made her one with vitiligo like himself. He got so much positive feedback from the Brazilian press and public that he is now expanding into creating dolls with other disabilities! I saw photos of a doll with a white cane, and another with a wheel chair. Check out the full article here on the Bright Side website.

Dan Mancina slides backwards on his skateboard along a concrete ledge with his front wheels hanging over the side (backside lipslide), holding his white cane directly out behind him at a 90 degree angle to his body. Dan is a white man with brown facial hair and a black cap on. He’s wearing blue jeans, a black t-shirt with a yellow logo, and black skate shoes. He’s at an indoor skatepark with some murals on the walls and banners hanging in the background.

The next story is about Blind skateboarder Dan Mancina. He already skated before he identified as Blind. He retaught himself to skate with a white cane after his vision loss progressed, and now he does all kinds of trainings and workshops for Blind kids. I already enjoyed watching his videos on instagram, so I was super excited when skate company Deluxe published this in-depth interview with Dan on their website.

And, last but not least, I’m sharing this article written by Kerry Thompson on her journey learning Braille: “Dot by Dot, Step by Step.” If you know about DeafBlind celebrity Haben Girma, then you may recall her frequently referring to a Blind dance teacher who opened up the world of dance to her at a youth summer camp program. Kerry Thompson is famous in her own right, with many Boston-area media outlets highlighting her disability-inclusive dance instruction at the Blackstone Community Center. Kerry got her MA from Harvard in human development and psychology. By day, she is the information and program coordinator for the Disability Rights Fund.

Kerry Thompson is a DeafBlind white woman with shoulder-length brown hair. In this close-up photo, she is turned to the side as she signs with another person or audience outside the frame of the photo.

Out of the many articles and videos on Kerry’s dance instruction, I chose to feature the piece on Braille for a couple of reasons. First of all, the entire article is written by Kerry herself in her first-person voice. It’s so important to read commentary in the words of disabled people because, no matter the good intentions of us hearing-sighted abled allies, we can never articulate the experience quite like our loved ones who live those disabilities on the daily. Plus, sometimes preferred terminology and framings shift within disability community spaces, so we allies need to be constantly updating our knowledge even if we think we have it all down.

Second of all, Kerry just started identifying as DeafBlind within the past few years. This article about learning Braille narrates her coming to terms with that identity and changing her communication and information technology systems. Although she was already identifying as Blind many years ago when she taught dance to Haben Girma, her residual vision enabled her to continue reading lips and signing. Now, with the help of her affinity for dance, she is moving more and more into the tactile realm of communication. Her journey illustrates the power of ProTactile philosophy and practice, and the ways in which DeafBlind people naturally cultivate the tactile even when larger society constantly privileges vision and hearing.

I hope you enjoyed the articles. Since I name-dropped her twice in this post, I think my next post has to be a review of Haben Girma’s new book, Haben: The DeafBlind Woman who Conquered Harvard Law.

Great article on teaching cane strategy

This photo was taken in Seattle in August 2017, during our one-week training with Tactile Communications. Oona is sitting on a rock next to a tree, holding her cane and smiling.

Greetings, all! It’s been a while and I have so many topics stored up in my head that I’m having trouble deciding where to start. Here’s a short but sweet post notifying you about this fabulous article on teaching cane strategy. It’s entitled “Using the teaching cane strategy with children who are DeafBlind.” It was published in 2009 by Marry Tellefson (MA, MS, TVI, COMS) of the Wisconsin Center for the Blind & Visually Impaired. I first read this article a couple years ago and it was so good that I find myself going back to reread it every few months. I love this article so much because it delves into all the complex layers of the white cane’s role in developing the DeafBlind child’s sense of autonomy and self-awareness: it is not just a navigation tool, it is a source of social-emotional belonging and confidence.

As hearing-sighted parents, we end up fielding a lot of questions on the white cane from friends, family, and random bystanders. I know our experience is common because I see other parents of DeafBlind kids complaining about it on social media. Like us, they get the typical inquiries… “Why does she need a cane if she wears glasses? Obviously she can see!” and, “Look, she can see this! She can see that!” Sometimes people ask us exactly how much she can see, like we can magically read her mind as parents and describe the unique nuances of her vision loss. Honestly, sometimes I even get these questions from fellow parents of DeafBlind kids: parents who have not come to terms with their child’s blindness because their vision is more usable than their hearing. It takes us sooo long to let go of our own sensory norm and put ourselves in our child’s shoes… or rather, to hold a white cane alongside them, as this article advocates!

I think the widespread ignorance about the white cane illustrates SO CLEARLY why we as families with DeafBlind kids need mentorship and training from DeafBlind service providers – they are the only ones that will effortlessly and comprehensively center our kids’ sensory existence and force us to do the same.

Here’s an excerpt from the beginning of the article that lays out the four major developmental areas that the white cane supports:

(1) access to sensory information; (2) communication and movement; (3) incidental learning, including concept development and mental imagery; and (4) emotional development, including sense of self, motivation, perception of safety, and isolation. The cane is a tool that addresses these areas of development by increasing the availability of sensory information to a child through auditory, tactile, kinesthetic, and vibratory feedback. Cane use promotes active movement, contact with the world, opportunities for exploration, and a sense of safety.

I hope check out the full article and put some of it into practice! And, as always, I am keen to think more about how these themes of empowerment through kinesthetic learning apply to typical kids just as much as disabled kids.

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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