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.