Insanity

Albert Einstein once said that making the same mistake over and over again and expecting a different result is the definition of insanity. Yet somehow we humans manage it. Especially in the area of deafness where the same old arguments, the same old philosophies and the same old mistakes are made over and over again.

I sometimes just wish that I had never lost my hearing. That I had become a cabinet-maker or a chef. I would love to finish my work, go home and just chill. I sometimes would love to live an existence where I am not made angry by the human race repeatedly discriminating. I sometimes wish it meant nothing to me, that it was something that existed for those others. Alas, this is not the life that I lead.

So once again I got angry. Once again Village Cinemas, this time at Sunshine, treated Deaf and hard of hearing people like garbage. Forty Deaf and hard of hearing patrons turned up last Sunday ( 28 April) to watch the new Avengers movie.

So the 40 excited Deaf and hard of hearing people sat down to watch a movie that had been advertised as open captioned. You can imagine the titles coming up. It being a Marvel movie you can imagine that there were some spectacular special effects just to warm up the audience. KABOOOOOOM, whiz bang … weeeeeeeeeee, ZOOOOOOOOM.

And then the dialogue starts. No captions. FUCK! Let’s wait a little longer and see if it comes on .. NOPE! You can imagine as one 40 patrons leaving the cinema to confront the manager. Confront the manager they did and I am told they got a meek apology and that was it. No offer of rescheduling, no offer of free tickets – NOTHING.

That’s 40 people. You can imagine a fair few kids among them. Disappointed and their afternoon, indeed their whole weekend, ruined. All because some clown couldn’t be bothered, didnt know how or simply did not want to turn on the captions.

I wasn’t there. Maybe I should just turn a blind eye. Maybe I should just laugh it off as just another idyosycrancy of those daft hearing people. No! It pisses me off. I feel the anger of those that attended as if I was there myself. Well done Village Road Show… Not only do you make people suffer Craptiview but the one chance you get to do it right with open captions you screw it up.

And then their was this. – “Your baby’s brain needs sound right away in order to be activated.”  – ” followed by this – ” Good hearing – a clear pathway through the ears to the brain – is important for speech, language, and reading development. You don’t want your baby to miss out on the sounds and spoken language that surround them. Hearing is your baby’s connection to the everyday sounds of talking, singing, and reading. These are the building blocks for learning to listen and talk and doing well in school. ” (Taken from: CLICK HERE )

But worse was to follow: – ” If a child has an undiagnosed hearing loss during the first few months of life, they miss this window of opportunity to naturally be hearing and learning the sounds of speech, even though they’re not saying any of those sounds back.
Dr. Patti Martin

Let me say this now. Hearing is good. It’s a useful tool. For a start it means when you grow up the arseholes from Village Cinema wont screw up your afternoon at the cinema. You wont have to worry about no interpreters or ever being discriminated against. It is all good.

But does it activate your brain? NO! Well it does, but is it the only thing to activate your brain, NO! Will not hearing your mummy or daddy sing or talk turn you into this soulless thing with an inactive brain? NO! I just wish these people who put out this ridiculous and inaccurate information would stop it. They do more harm than good.

When professionals distribute this crap parents take their word as god. The information is false. Babies do not need to hear they need to communicate. Whether that is by hearing or signing it does not matter. But it is a truism that they need to communicate a lot and be able to participate and be involved to develop their brain and language. Hearing alone is often not enough.

But anyway the great linguist Noam Chomsky recounts a story about deaf kids. As the story goes there were these deaf kids who had received no exposure to sign language. Their spoken language was extremely limited. These kids were left alone to play. It was found that over time that they had actually developed their own sign language. And this sign language was so developmentally sophisticated that their communication with each other was actually age appropriate.  Perhaps only they could understand each other but this language allowed them to communicate at a level that other developmentally normal kids of their age could.

There is a similar story of deaf people in Nicaragua. Apparently deaf people in this country had been separated from each other and had limited exposure to each other. There were several failed attempts to teach them spoken languages that just led to horrifically delayed language.

I am not sure how it happened but somehow a few deaf of Nicaragua were allowed to mingle and socialise on a limited basis. Over a period of time these people developed their own sign language. Researchers were later to find that this sign language had complex grammar and rules similar to other sign languages.

And then there is Bellugi, an American linguist. She did comprehensive research into the areas that the brain uses to process language. She found that sign languages and spoken languages are processed in the same parts of the brain . Apparently when the Wernicke’s area of the brain is damaged it causes deficits in both sign and spoken language. The Boca area of the brain is activated when people are either speaking or signing. Language is language whether it is signed or spoken.

What I am trying to say is that the brain is not activated by hearing. It probably isn’t just activated by using sign language either. From what I can tell, from my limited study, it is human interaction that activates the language brain.

Even in the absence of any language it has been proven that people begin to communicate and develop their own language.  This can be seen from the young deaf kids left alone and the deaf people from Nicaragua. And this language is not just gestures, its sophisticated with its own rules and grammar.

So what do we conclude? We conclude that interaction and communication is what activates the brain and leads to language development. Whether this is sign or hearing is not the point. Human interaction is the key. We also know that often when deaf kids are expected to get by with limited hearing it impedes their language, education and human development. Simply because they miss too much and are isolated. It is time to acknowledge this as fact.

But still professionals make the same old mistakes. They insist that deaf kids MUST HEAR! It’s rubbish and it’s time that we cracked down on this misinformation because it is doing more harm than good.

And that’s why I get angry. I am just fed up with Deaf and hard of hearing people being screwed around – CONSTANTLY!

“A language is not just words. It’s a culture, a tradition, a unification of a community, a whole history that creates what a community is. It’s all embodied in a language.”

Noam Chomsky

 

 

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Get Seekered!!

I watched Special on Netflix last week. It stars Ryan Connell, an actor who has cerebral palsy. I only watched a few episodes mind you. It was recommended to me. It is about a guy with “MILD” cerebral palsy. He is also gay. Might have been Jewish as well. Reminded me of the old Sammi Davis Jnr joke when asked his golf handicap, “.. I’ve got three – I’m blind, I’m black and I’m Jewish.”

But Special was a bit twee for me. A wee bit Brady Bunchish.  That’s despite the rather explicit sex scenes and the swearing. That said it was an interesting examination of society and its attitudes towards people with a disability. It was also an interesting examination of how people with a disability view themselves. The awkwardness, the worry of what the Ablebods will think of us. What’s gonna happen when we have sex? Our own inherent Abelism, Says the star of the show, and often, ” … I’ve got CP but it is only mild though.”, as if by saying so the Ablebods will see him as more normal and accept him.

The exploration of sex interested me most. It was a very explicit examination of how the physical disability can “get in the way” of sex. The lack of coordination, perhaps the inability to control saliva, limited mobility and so on. Naturally this makes the disabled person extremely self conscious. I well recall when I started to explore sex. The worries of what people would think of my hearing aids and whether the hearing aids would whistle and so on. Looking back, absolutely trivial compared to the challenges of a person with severe (for want of a better word) physical disabilities.

Using a sex worker is something a person with a disability might do to satisfy their sexual needs. Completely understandable. The show did not shy away from this. Then there was the compassion and patience shown by the sex worker to our star as he loses his virginity.

Yeah it was man to man anal sex and our star proclaims something like “Anal sex is divine…” or words to that effect. It was confronting because our stars limited mobility meant that adjustments needed to be made. I am sure this is hellishly embarrassing for the person with a physical disability, but thats life. This is part of the reason the show is so great. It provides us with an insight and understanding of these challenges in a human and empathetic way. But yeah, the show was a bit twee, little bit too wholesome and mushy for me. 😀

But you know the star of our show wasn’t a person with a disability. Well he actually was but in today’s brave new world he isn’t.

You see there is a new train of thought that believes that being disabled is offensive. The word disabled is now up there with words like Nigger as being offensive and needs to be done away with. No more using the word disabled please … Those days are over, finished. DO NOT INSULT US – for we are Access Inclusion Seekers. Don’t believe me well click on the link below –

ACCESS INCLUSION SEEKERS

Yup, we are now either Aised or we are Seekered. I kind of like Seekered. You know there is too much to play with on Aised. Can you imagine. “Im not Aised” or ” I cant be Aised”. It would get way too silly.

Seekered has a lovely ring to it. I am Seekered. It makes me feel real, like people are looking out for me. I feel really accepted being Seekered. Way, way better than that old negative DISABLED. That term DISABLED and all of its negativity, I want no more to do with it. Out with the old and in with the new for I am Seekered.

Think about it. With this new term we will need to change the name of the National Disability Insurance Scheme (NDIS). It won’t make sense now that we are Access Inclusion Seekers. No siree! The new name will be a mouthful. Think about it, The National Access Inclusion Seekers Insurance Scheme. Yup, NAISIS. That looks kind of wrong. Something that Fraser Anning would be all over. It’s either that or we come up with a complete new name and brand for the NDIS that incorporates Access, Inclusion and Seeking. Cannot be too hard, I am sure.

But yes, I jest. Regular readers of The Rebuttal will know my pet hate is the never ending quest to find a nice way to label us Disableds. The Height Challenged, Voice Impaired, the Differently Abled and so on and so on.

I always hope, beyond hope, that we are over it. But sadly not. That people will actually come up with a tongue twister like Access Inclusion Seekers and others will take it seriously tells us that society has such a long, long way to go before it’s comfortable and accepting of people with a disability.

For me I prefer the message of Special. It just tells it as it is. It accepts that disability is there. It sees the disability and the person. It sees the challenges and the adjustments and just accepts them for what they are. In recognising the different way that a person with a disability lives their life society can then design itself so that the world is better designed for people with a disability. In short.

Will people please get over it and focus on what matters. An Access Inclusion World – Make the world take responsibility instead of just us the Seekered. Sorry, I mean the disabled. One can but dream.

In the mean time the fools that come up with these ridiculous terms. Well, they can go and get SEEKERED … Make of that what you will.

A Book and Its Cover ….

coverHave you ever walked down the street and turned your nose up at people. You know the homeless person on the street. Bit smelly, dog at his feet. Said to yourself, ” ….if he can afford a dog he can afford a job,”  Or the Tattooed guy with the mullet. Snorted at him under your breath did you?  Or maybe those Crocs with socks, shocker that hey? Yeah we have all done it. Me included.

Yet we like to see ourselves as open minded and accepting. Despite this we have these preconceived ideas about what makes an upstanding person. In your mind this might be a person dressed immaculately who speaks kind of plummy, walks gracefully and doesn’t have a hair out of place on their head. Good person that. The book and its cover and all that.

But you know that guy with tattoos and a nose ring might have a PHD and be working on the Human Genome Project. Paradoxically, that guy in his immaculate suit might be a drug dealer. You would never know.

But a books cover does not tell you if it is any good. The cover does not tell you the full details as to whats in the story. It might give you an idea that it is action or romance. Perhaps that guy in army khaki can indicate it’s about war. The reality is that until you open the book, you really do not know what is within. More often than not the book will be very different to what you perceived and throw up surprises. Generally this is what makes a good book. People are like that too.

I was reminded of this during the week. Of course Facebook was the catalyst. I was Facebook hopping. It’s a term I use for people that endlessly flip through their newsfeed in the vain hope that they will find something interesting. Every hundred or so posts something might grab the hoppers interest. In my case it was Deaf people swearing.

It was an advertisement for the ABC Tv show, You Cant Ask That.  This is the informative ABC show that focuses on marginalised people and answers the daft and sometimes insightful questions that mainstream people want to ask the marginalised.

Like asking a gay man, ” Does it hurt when you have sex?” and the like. It is sad but true, people tend to focus on the insignificant.

So the swearing? Yep, its what I get asked most. How do you sign dick, cunt, sex, fuck and so on. People want to know. It’s the human mind that drifts to the filthy and irrelevant. We wish it wasn’t so, but it is.

I am always more than happy to oblige. Why? Because I know it is people just trying to engage with me. Trying to use humour to break down barriers. People trying to find a way to break down their discomfort with having to find a way to communicate. It is just people being people.

So back to the ABC advert. Swear words in sign. What better way to get peoples attention. Cocksucker, motherfucker, fuck, shit etc … Yup this is how the ABC drew people in to watch their show. Perhaps it was the shock factor that the ABC wanted to shamelessly exploit or perhaps they thought it just humanised things. I suspect it was the former but either way it worked. I took a look.

I rolled my eyes. I knew that this was going to make people watch. I knew that swearing in signs would ping their interest. I reasoned that this was not necessarily a bad thing. Perhaps there would be other things that they would learn that would help to promote deaf people and Auslan in a positive light. Then I saw the comments from the Deaf community.

“This is a Disgrace! Some signs are not Auslan what were they thinking?????”  …. “Horrific, shame on them” ….. “Are you joking?” …. “Using our language as a cheap party trick!!!” and so on and so on.

Basically the Deaf community members who were part of the show were lambasted for taking part. They were criticised for using the wrong signs. Criticised for using swear words. Criticised for cheapening Auslan and the Deaf community. In short they were given curry!

Why? Well because people judged the book on its cover. If they had watched the show proper they would have seen that the swearing was just a very small part of the whole story. Like the gun on the cover of the book. It provided just a small indication as to what was within.

I watched it and I liked it. What the show did was show that deafness comes in many shapes and forms. It showed members of the Deaf community. It showed a young deaf person. It showed people with an acquired hearing loss. It showed a person who was deafblind. It showed that deafness is like a box of chocolates – You never know what you are getting.

It touched on families, communication, bullying and adjusting. It showed positives and it showed negatives. But mostly it was positive.

It showed deaf people, including Deaf people, in their various shapes and forms enjoying life, confronting challenges and doing it with humour and grace. It showed them as human beings.

Yet on the basis of a short clip from the ABC that was designed to shock, the people involved with the show were judged. They were told to be ashamed of themselves. They were told that they were using the language wrong, using the wrong signs and so on.

It’s the use of language that really gets my goat because I don’t know anyone that uses any language properly. The English language is bastardised daily by people and often the bastardised versions become common and accepted parts of the language … Just watch how the Oxford dictionary changes every year. And so it is with Auslan. It is unavoidable and all part of the evolution of the language.

But mostly I am pissed because the people that took part were ridiculed and criticised. And the criticism was based on a very short clip that did not even come close to showing the content of the show. A content that was informative and exceedingly human. Never judge a book by its cover.

Shame on you people that attacked them. It was snobbery at its worst.

 

Not Good Enough

good
Graphic is a meme that reads, Not good enough, not good enough, never fucking good enough.

“You have to be the best planner I have ever worked with, a breath of fresh air. Absolute champion.” With those words my week ended. It’s a good way to go to the weekend with that sort of praise before my very eyes. I was going to say ringing in my ears, but as it was sent by text it didn’t quite seem right. And anyway it would make me seem like a pretend hearie.

But the praise made me reflect. It made me realise just how far that I have I come. I have taken on insurmountable barriers and knocked them down. I have come from a time where support at university was minimal. I have been part of a movement that has lobbied hard so that Deaf and hard of hearing people all over Australia need never be excluded.

I started work at a time when there was no technology, no email, no NRS. I had to rely on finding time that the Deaf society accountant could spare me for interpreting. I had to get others to make my calls. I come from a time where jobs were simply not an option for me because there was no way around the communication issues.

But I fought those barriers. I fought them, as did others of my ilk. The battles that we have fought have meant opportunities could be afforded to Deaf and hard of hearing people previously considered impossible.

In my time we have fought for the NRS. We have utilised technology innovatively to create opportunities. We have introduced captioning to the workplace. We have done many things. I am very proud of what I and countless other Deaf and hard of hearing people have achieved during my 30 year career.

So when I get praise like “You have to be the best planner ever….” It moves me. It moves me because I could so very easily have been denied the opportunity to be at this point where my skills are so valued. It moves me because I know countless others have benefited from those heady days of the 80’s and 90’s where we achieved so much and created so many opportunities. I am very proud to be part of a movement that made Australia a better place for all people who are Deaf and hard of hearing.

The opportunities that I have been afforded because of my and other peoples hard work I expect others to benefit from. My expectations for other people who are Deaf and hard of hearing are high. If those expectations are not met it makes me angry and very frustrated. And so it was last night.

I was asked to be interviewed. A young deaf woman who is studying journalism wanted to interview me about the benefits of Auslan. She touched on many issues such as teacher of the deaf training, influences on Auslan, mental health, what makes a good Deaf school, language development, cognitive impacts and so on.

Towards the end of the interview we began to touch on mental health and why the incidence of mental health was so high among people who are Deaf or hard of hearing. To try and highlight my point I asked her how she was going at University at the moment.

She said that she was going ok. I asked her what support she had. She said a note-taker. That was all. I asked how she coped in group sessions and discussions. She said she didn’t. She was frustrated and left out. I pointed out that this is the frustration of many deaf people and that it often leads to stress and mental health issues.

I wanted to know why it was that she had only received a note-taker. She said she thought it was that she speaks so well and communicates well in small gatherings. Because of this she felt that they had assessed her as needing only a note-taker.

I questioned her about live remote captioning and interpreting. She knows Auslan but is not proficient. She knew nothing about live remote captioning. I was livid. She attends one of Australia’s largest and richest universities and she had received virtually no advise and offered next to nothing.

This frustrates me no end. We are in 2019. In 2019 there is no excuse, whatsoever, for a large and wealthy institution not to provide advice, options and adequate support. The disability support staff at this university are vastly experienced. That this young woman was provided with only a note-taker and left to fend for herself for the rest of her learning is not just discrimination, it is tantamount to abuse.

I spent 12 years as a National Disability Coordination Officer. In that time I worked hard to promote access and inclusion in education for people who are Deaf and hard of hearing. I created solutions for access to online learning. I provided examples and training on how to make media such as videos accessible. I showed how using green screen you could super impose a lecture with an Auslan interpreter so that online content was accessible in Auslan. I showed how you could provide access to Auslan and captioning from virtually anywhere in Australia so that travel costs and the like could be minimised.

In short I know what I am talking about. I know that the solutions exist. AND I know that no Deaf or hard of hearing person, anywhere, need be excluded or miss out. There are no excuses whatsoever. Yet this young woman is being made to watch videos in classs without captions!!!

This young woman confessed that she feared drawing attention to herself. Subconsciously, perhaps, she feared that asking for support was a sign of weakness. She felt a burden. This saddens me. She should not have to ask. She should be advised and offered a range of support. Sure, if in the end she chooses only a note-taker than that’s fine. But this did not happen. It disgusts me.

“But I am doing ok. I am passing.”, she said. She confessed that she didn’t feel right having them pay for her support. I pointed out to her that by getting the support she is actually providing employment to people. Because of her people can pay for their cars and food. Without her virtually thousands of people would be without a job from hearing aid makers, interpreters, captioners, audiologist and the like. No way should she feel a burden. She, along with millions of other Deaf and hard of hearing people, is the centre of a thriving economy! There is no guilt to be had.

I have offered her my support. I have offered to go in and make the institution provide what they should be providing. I have offered to go in and remind the disability support staff what their job is!

My god, this is 2019 and this should not be happening. I will be damned if going to let 30 years of hard work and advocacy from myself and many others go to waste.

It’s just not good enough