Brain surgery is not for me

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Let me tell you about Joe, who I met in a shop in France.  He said something to me, which I didn’t understand, and my friend Jenine explained to him that I’m Deaf. No worries. Conversation with Jenine goes on. He asked her how we were enjoying the music festival.

She explained that actually we weren’t attending the music festival.  “But why not? It’s free. You should go to the concert tonight.”

“Well, Asphyxia can’t hear it.”

This hit Joe hard. Hand to his heart, sorrow on his face. He turned to me. “You can’t hear MUSIC?! But what is life without music?” (Or something.. the facial expression said it all – I didn’t catch his words.)

I shrugged. “It’s ok. I’m happy as it is.”

Then Joe has a deep idea. “You know, you could get a bionic ear. Have you thought about that? Then you could hear music.”

Let’s just pause here for a moment. Does Joe really believe I’ve gone my entire life, without it occurring to me until now, that the bionic ear (or a cochlear implant) is a possibility? Does he really think that now he’s suggested it, I’m going to go home and look into the idea?  And, for that matter, does he think he’s the first to come up with such wisdom?

In fact, this is something I find intensely irritating, the need to discuss, regularly, with perfect strangers, the intimate details of what operations I might choose to have.  I have, in the past, explained to people like Joe, that actually, a cochlear implant or bionic ear would do nothing for me since my ears work fine. It’s the nerves connecting my ears to my brain that don’t work. Which means I’d need a nerve implant in my brain. Forget it – I ain’t letting any surgeon poke around in there. But I’m sick and tired of explaining my medical situation to strangers.

My friend Anna came up with a marvellous response:

[FORMAT THIS LARGE, BOLD, CENTRED]”Have you thought about having botox? I feel it would really help your situation.”

But sadly I can’t bring myself to use it. Joe meant well. He just hadn’t thought about Deafness before and I had the great joy of participating while he had his first, elementary encounter with the concept.

Yeah, so that’s Joe, in France. There’s Joes all over Australia too. If I had a dollar for every person who has suggested I get a cochlear implant (or a ‘bionic ear’) I would be rich indeed.

This is a little abstract painting I did in protest. I’m protesting constant need that complete strangers feel to discuss my medical condition with me and make recommendations to me. It’s patronising, intruisive and insulting.

Feel free to share this post to raise awareness of this tricky issue.

(And this painting is for sale – you can buy it online here.)

 

Learn Auslan – Level 1 – Colloquialisms

These are common Auslan signs which don’t relate specifically to a single English word. Note that many of them have their own lip patterns too.

• Strange/weird
• Finally, at long last
• Too late
• Hopeless
• Oh, now I get it!
• Come on
• What luck this situation occurred!
• Take me home
• How dare you!
• Sprung! / Ah ha! Caught you! (In the video, just before this sign, I start to sign something else – please disregard that!)
• Please yourself
• Relief / phew

Happy unChristmas cards

This is a card for those of us who don’t really do Christmas but don’t want to give a total slap in the face to those around us that do, by ignoring it entirely. If, like me, you’re an un-Christmaser, maybe you’d like a pack of these? They sold out quickly last year so grab them while they are available if they take your fancy.

They’re in my shop here.

Antlers and Tulle Christmas cards

If you’re looking for Christmas cards, you might like this one. This is a sweet little doll with antlers I made from an old Norwegian book while I was in France last year. She wears a knitted green jumper and a tulle skirt to match the one I made for myself. It’s plain inside, read for you to write your own greeting for family and friends.

You’ll find packs of 5 in my shop here.

A review of BOY by Phil Cummings

Have you read ‘BOY’ by Phil Cummings, illustrated by Shane Devries? It’s a picture book targeted at preschoolers. I was recently asked to sign it. But once I’d had a read, I declined. It’s about a young Deaf boy. I have never met Phil Cummings and I don’t know whether he is Deaf or has experience with the Deaf community, but his website doesn’t mention either. I suspect he may not have knowledge nor experience of our community, and yet has written a book about Deafness anyway.

I showed it to a few other Deaf people, without letting them know my thoughts, and asked them to give me their perspective on the book, and they each raised the same concerns that I have.

The key problem we have is that the book describes exclusion, something we Deaf people face in abundance every day, and feel intense frustration about, and yet the character in the book is unbothered by it. He is described as being ‘happy’ despite the villagers not bothering to take the time to understand him, and ‘not needing to know’. But Deaf people DO need to know and we don’t feel happy when we are excluded from communication. The book never once considers his feelings about this situation, and the implication is that it is okay to treat Deaf people like this, when it is not.

It bothered us that the author uses the euphemism ‘dancing hands’ when he means ‘sign language’. This is a bit like describing hearing people as ‘singing’ rather than speaking. Signing ‘thank you’ is not dancing hands – it is a simple gesture. We feel the author is romanticising our language inappropriately instead of recognising it as a tool for communication, just as speech is an equivalent tool. This is the same kind of attitude that we deal with every day when hearing people tell us to stop signing because it bothers them, or doesn’t want an interpreter in the room because it’s too distracting, or talk over us because spoken communication is considered more important that signed communication and so on. Sign language needs to be valued for what it is: language.

The Deaf boy in the book is excluded by the villagers, until he inadvertantly resolves a conflict between the king and the dragon. After that the villagers suddenly know how to sign and make the effort to communicate with him. The message here seems to be that as a small boy, he is not worth communicating with, until he has done some heroic act, and then he is worthy of being given access. Access is a basic human right which should be promoted as essential regardless of what acts a person has performed.

There are some inaccuracies too. A Deaf child who is able to read the fear in his parents’ eyes knows he is living in a dangerous place, a place of war. We find it hard to believe that such a child would obliviously run into a battlefield. The child might not hear the sounds of battle but battles are visual too – this is simply unrealistic.

Also, a child who attempts to communicate with the villagers using drawings would be unlikely to continue to do so if his message is not getting across. Suddenly in the book it becomes clear that he knows English, because he writes in the sand, ‘Why are you fighting?’ Most Deaf signing children of that age do not have sound English skills, unless they have been raised orally (which clearly he hasn’t), and so their English would be incorrect. Supposing he knew how to write English, he would probably write, ‘You fight, why?’ The correct English he uses is highly unrealistic. If he could use English at that level, why does he not use it to communicate with the villagers?! He is presented as stupid, as well as Deaf.

I feel the book does not promote Deaf interests but is actively damaging, by encouraging hearing people to see Deaf people as objects (‘Boy’ does not even have a name!) who lack realistic feelings, and whom it is okay to treat in an exclusionary manner. It teaches inappropriate terms to use about Deaf people and our language.

I hope that by writing about this issue, I can encourage you to be aware and sensitive if you are writing about disability or cultural groups other than your own. Best to get someone who has lived that experience to check over your work before it goes out to the world. This goes for any kind of media, films, presentations, talks and so on.

If you’d like to do your bit to help raise awareness, feel free to share this post. Thanks!

Antlers and Stripes Christmas Cards

These are my most popular Christmas cards. I’ve ordered several packs for this year, but they always sell out so if you’d like some, get in quickly. The card features a papier mache antler doll I made myself, who wears a sweet little striped suit knitted by my fabulous friend, Torhild Trydal. On the front are the words “Merry Christmas” which I wrote with my own handwriting. It’s plain inside, read for you to write your own greeting for family and friends.

You’ll find packs of 5 in my shop here.

Learn Auslan – Level 1 – Lip patterns

In Auslan, the convention is to not mouth or speak the English words and sentences as you are signing, although some Deaf people do this to an extent anyway. For practise, try keeping your mouth closed as you sign. Avoid signing Auslan and verbally speaking English at the same time, as the English will confuse your Auslan grammar, facial expressions, depicting signs etc.

Auslan does, however, have its own lip patterns. These are the mouth shapes Deaf people make when they sign particular words. See the video for the lip patterns for these common words and phrases:

Vocab:

• Finish
• Never seen it / never heard of it
• Strange/weird