Helen Keller Deaf-Blind Awareness Week [en]

As the founding editor of Phonak’s community blog “Open Ears” (now part of “Hearing Like Me“) I contributed a series of articles on hearing loss between 2014 and 2015. Here they are.

Tomorrow marks the 135th anniversary of Helen Keller‘s birth. I remember being fascinated by Helen’s story as a young child, full of wonder at how she managed to learn to communicate although she was deaf and blind. (Thought she was born deaf and blind? Check out the myths.)

More recently, whilst exploring the d/Deaf/HoH world online, both out of interest as a hearing aid user and as “blogger-in-chief” of Open Ears, I came upon postings about Usher Syndrome, a rare progressive disease that affects both sight and hearing. They gave me a touch of the fear one could have about losing sight in addition to hearing, particularly if one uses sign language.

In 1984, President Reagan proclaimed the last week of June “Helen Keller Deaf-Blind Awareness Week” — an occasion to raise awareness about deafblindness and highlight the contributions of those who have this disability. It has since spread to some other anglophone countries.

As my contribution to this awareness week, I’d like to share two videos about young deafblind women with you.

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The first is a documentary produced by and about Brittany, who has been deaf and blind since she was two. She walks us through her life at school and shares her feelings about her disability and relationships with others.

The second is from Molly, who has Usher Syndrome. She has actually set up a charity, the Molly Watt Trust, to advocate and raise awareness about the condition. In her video she tells us about the consequences of being both deaf and blind on her everyday life.

Both are well worth watching and show different faces of deafblindness. There are many others of course, not forgetting those who in old age see their senses fade away to the point where they can no longer make use of them.

Invisibilia: A Podcast About the Hidden Forces That Shape our Behaviour [en]

[fr] Un super podcast à découvrir: Invisibilia. Ça parle des forces invisibles qui conditionnent le comportement humain. Et c'est super bien fait. Quelques histoires pour démarrer: l'homme aveugle (sans yeux) qui voit par écholocalisation et fait du vélo, la femme qui ressent physiquement ce qui arrive à ceux autour d'elle (un cas extrême de "synesthésie miroir"), le rapport entre nos pensées et qui nous sommes (sommes-nous nos pensées? quelle importance leur accorder?), et j'en passe.

I thought I’d written a post somewhere introducing the podcasts I listen to regularly. I don’t watch TV, but I do listen to a bunch of podcasts religiously: Radiolab, On The Media, The Savage Lovecast, and The Moth. Serial was great, too.

Through Radiolab, I recently discovered the new show Invisibilia. It’s actually co-hosted by one of Radiolab’s former producers, and there is clearly in the choice of subject matter a kinship with what drew me to Radiolab in the first place all these years ago.

Invisibilia is about the stuff that we can’t see and which shapes human behaviour. In the pilot season, you’ll find stories about a blind man who can actually see by using echolocation, a woman who cannot feel fear, and Paige, tragically flipping through gender categories. And that’s just the beginning. Subscribe to the podcast and start listening.

Here’s a bunch of random takeaways for me after listening to the first episodes:

  • the three “stages” in the history of our thoughts: 1) all thoughts are meaningful (Freud), 2) some thoughts are BS and we can think ourselves out of them (CBT), 3) our thoughts don’t deserve that much attention (mindfulness)
  • how important categories are in helping us make sense of the world (I kind of knew that); reminded me of India again and the utter confusion of the first weeks where all my European categories broke down, and I didn’t have any Indian ones yet to work with
  • how gently facing one’s fears works much better in getting rid of them than obsessing about them and trying to avoid their object
  • how important our expectations of what people can do are in determining what they actually are going to be capable of doing (“blind people can’t do that“)
  • venting when angry, whilst therapeutic in the moment, actually makes us more angry and aggressive in the long run

Sound interesting? Check out the list of the previous episodes. If you start listening, let me know!