AN OPEN LETTER TO GINO MUNARI, General manager  for film buying, Village Cinemas and Al McEwin, AUSTRALIA’S DISABILITY COMMISSIONER AT THE  AUSTRALIAN HUMAN RIGHTS COMMISSION.

Hi Gino and Al

My name is Gary Kerridge. Al and I are well acquainted. Gino and I a little less so. Though we did meet many moons ago in Canberra at a Cinema Access Advisory Group meeting.

Gino, I saw recently your response to Dean Barton Smith. Dean had written to your CEO about cinema access, or more accurately, the lack of it.

I noted you blamed the suppliers for providing dodgy and unreliable technology for captioning. Blastard suppliers!!! You would think they would have quality controls … but hey we are only deaf, what do we matter.

It made me revisit those heady days back in 2010. Remember that Gino and Al? Those were the days.

That was back in Shorten and Innes time. They negotiated a deal with the Big 4 cinemas. Remember that Gino?

We were to have a trial of Captiview. You know, try it and get feedback as to whether it was any good. If good great. If not … well back to the drawing board.

But that didn’t happen Gino and Al. Those clever people at the cinemas decided to roll it out fully anyway. I don’t know why because initial feedback about the technology was that it was terrible. Mind you, not your fault Gino, it’s those blastard suppliers.

But anyway, Gino and Al, we all had such high hopes you see. Because there was an agreement that would bring wonderful and previously undreamt of access.

Remember that agreement Gino and Al? If you have forgotten here is the agreement. https://www.dss.gov.au/sites/default/files/documents/05_2012/cinema_access_implementation_1.pdf

Let’s recap. By the end of the agreement in 2014 the Big 4 cinemas would have 242 screens providing access. Wow!!!

And you know cinemas with 6 screens would have at least one accessible. Over 6 screens and up to 12 screens would mean at least two were accessible. If there were more than 12 screens then three screens would be accessible. Just wow when you consider before that we were lucky to get one a month.

But wait – here is the best part. By 2014 every screen that was equipped with captions technology would show captions at every session. Pardon me if we felt a bit like kids in a lolly shop.

So Gino and Al – what happened? It’s now 2017. At Chadstone today I can see Beauty and the Beast is captioned  at four sessions and that appears to be it. Chadstone is huge, what’s happening at all the other accessible screens?

And you know, Gino and Al, even when access is given it often fails. Batteries are flat on technology. Captions drop out. Captions are not received. If you wear glasses sometimes you have to take them on and off to see captions and movie alternately. Tall people have to slump cos the Captiview designers thought all deaf people were short. It isn’t a pleasant experience. In fact it’s awful. Watch this video if you don’t believe me. 

But it’s those blastard suppliers isn’t it Gino. Shocker.

And you know, Gino and Al, the cinemas received a grant to help with the roll out. What was it $480 000 or something. Despite your protestations, Gino, of extensive capital outlay by the cinemas the tax payer contributed. And very little of what was agreed appears to have occurred. Given this, Gino, will the cinemas pay it back. Or perhaps get those blastard suppliers to do it for dishing out, well, Craptiview.

And in closing, Al, given the cinemas have clearly not held up their end of the bargain, they appear to have broken the law. SO – what will the Australian Human Rights Commission do about it?

Yours in the Hope of Full Access

Gary

I read something today. What I read took me back to the 1880’s. It made me think of the Milan conference. This is a famous conference held in Italy where some arty farty, know nothing hearing experts decreed that deaf people should never be given access to sign language. They were to be educated orally forever after. Signing was sin, almost akin to murder and was bound to send them all to hell. I mean, god forbid, how do you sign things to do with sex. It would just be way, way too RUUUUUDDDE.  If you want to know more about Milan  read this link – https://www.verywell.com/deaf-history-milan-1880-1046547

That dreadful conference was to put the lives of deaf people back a thousand years. It took over a century to undo the damage that the recommendations from this conference did to deaf people. It led to generations of deaf people who became virtually language-less and illiterate. We in the deaf community have all heard the horror stories where deaf kids were caned for signing or for using gestures. We have all heard of the stories where deaf kids were made to sit on their hands. If you want to see what it was like, and is often still like, watch this video. (Note the anti-sign language bias.)

I really thought that today, in 2017, we were over it. I thought we had moved into an age where we had learnt from our mistakes of the past. I thought we understood that we had screwed up the lives of generations of deaf people and that we would never go back there and then I read this:

“The cultural resistance definitely stems from low expectations that teachers have of students with disability and that stems from a lack of teacher training. That is probably one of the most critical areas. We all talk about training as a broad concept but there are some really specific things that I think teachers need training around and they may seem obvious at first to teachers but they are actually very specific around students’ disabilities. A lot of teachers do not know that for students who are deaf, for example, those students actually do not really need visual materials to support their learning because it disenables that student from focusing on what the teacher is actually saying and it is quite distracting. There are specific types of training the teachers need around different types of disabilities that are imperative. As I said, without a knowledge of those sorts of things teachers do not expect much of students with disability because they do not understand disability.”

I had to read this several times before the reality of this statement actually sank in. It is fair to say that I spat out my coffee. I thought it was from some ignoramus who had no clue. Indeed the person is an ignoramus. In fact ignoramus is too kind a word. What is worse is that this person, an aptly named Ms Lobo (have fun with that one), was representing the National Disability Services (NDS) in a submission to the GENERAL PURPOSE STANDING COMMITTEE NO. 3 STUDENTS WITH A DISABILITY OR SPECIAL NEEDS IN NEW SOUTH WALES SCHOOLS.

Statements like this scare the shit out of me. They scare the shit out of me because the NDS are a peak body that have much standing with the Government. They represent service providers and provide the government with high level policy advice on the service and support needs of people with a disability. And they said this ….

Let us for a moment dissect that statement. Deaf students …. “  …. actually do not really need visual materials to support their learning because it disenables that student from focusing on what the teacher is actually saying and it is quite distracting.”

Now “visual materials” – What are they? Auslan interpreters? Sign language? Captioning? One assumes that Ms Lobo- – – – is referring to these things. And these things are the very things that people who are deaf need to be able to communicate, understand and participate. Not only in education but the whole of the community.

Ms Lobo—- has said, to a high ranking enquiry, while representing a highly influential organisation, that these things, “disenable that student from focusing on what the teacher is actually saying and it is quite distracting.”

What Ms Lobo _ _ _ _ is saying, in essence, is that deaf people just need to watch very closely the speaker, without support, learn and participate. So they have to listen with limited hearing, lip-read and somehow be equal participants. Because if they have any visual assistance then it is, in her words, “..quite distracting.” Well thanks Lobo.

So pardon me if I am seeming to be over dramatic but isn’t this exactly what the Milan conference recommended? That visual means like sign language be eliminated and that deaf people were to communicate and receive instruction only orally and be expected to lipread everything. And that by doing so they would all become better listeners and lipreaders. Was that not the gist of it? Ms Lobo- – – – wants us to go back there even though generations of deaf people were destroyed through these methods.

And then somehow teachers that use visual means like captioning or sign language do so because – “ .. teachers do not expect much of students with disability because they do not understand disability.” In short, teachers that use visual communication means do so because they have no clue. OK! Now that makes complete sense!

Now people go forth and let people who support clueless statements like this know and let the NDS and Ms Lobo know just how clueless that they really are!

If you want to see the comment in all its shining glory its on page 71 – https://www.parliament.nsw.gov.au/committees/DBAssets/InquiryEventTranscript/Transcript/9901/Transcript%20-%203%20April%202017%20-%20UNCORRECTED.pdf 

 

The NDIS began in 2013 to much fanfare. It was to be the saviour of people with a disability. It was to provide the care, the support, the technology and the wherewithal for people with a disability to be active members of the community. What is more, by investing in people with a disability it was to create jobs and opportunities. More importantly it would allow people with a disability to be active economic contributors to society. There would be a significant return for the investment.

But in the Australian today, if you are to believe Rick Morton, the NDIS is in free-fall. According to Morton the NDIS is becoming unsustainable. He states that there has been an un-predicted influx of young people with autism that were not budgeted for. He also states that there might be a need to tighten the eligibility for people who are deaf and blind. If we do not address these issues, according to Morton, the scheme will be unsustainable.

When the NDIS was rolled out in 2013 it was claimed that the scheme would be assisting 460 000 people with a disability by the time it is fully rolled out in 2019. I have always questioned these figures. I have always thought that the scheme under-predicted how many people with a disability would require assistance. Let us consider some statistics.

The Australian Network on Disability claims that 4 million people in Australia have a disability, that’s almost one in five. It further claims that 1 in 6 have a hearing loss. Australia’s population is 24 million, so that’s 4 million with some kind of hearing loss. Apparently there are also 357 ooo who are blind or have low vision. It is said that 10% of the population have a significant mental health condition. (240 000).

Then consider these figures from The House of No Steps –

• Every week, 5 Australians sustain a spinal cord injury ^[2]
• Every week 10 – 15 Australians sustain a severe brain injury ^[2]
• Every 13 hrs, a child is born with cerebral palsy ^[2]
• 1 in 1000 children born each year will have Down Syndrome ^[2]
• Every 7 hrs, a child is diagnosed with an autism spectrum disorder ^[2]
• Every 2 hrs, a child will be diagnosed with an intellectual disability

In 2012 the Australian Bureau of Statistics estimated that 115 400 Australians had Autism. Then we need to consider wheelchair users, neurological conditions, acquired brain injury and so on. It can be argued that the figure of 460 000 used by the government to justify the establishment of the NDIS and set budgets was nowhere near adequate.

I remember discussing this issue back in 2013 with a prominent Deaf advocate. We were discussing the fact that there were a few million Australian’s that had a hearing loss. My argument was that  many of these “few million” would require support. The advocate kind of poo pooed me aside. She believed that most of these would never need the NDIS. It was almost like it was only the people who had severe to profound hearing losses who would require support.

I felt then, as I do now, that her view was nonsense. Indeed it worries me when people stand in judgement of the impact of a disability. How do you measure the impact of deafness, or indeed any disability? Do we just come up with a broad assumption that it is only those with more severe hearing losses or disabilities that are impacted significantly?

Such an approach is fraught with danger. In years gone by I worked on a program for youth who had a hearing loss. I was always struck by the fact that it was often young kids with so called “lesser” hearing losses that had the most issues. There was an expectation of them that they could hear and cope, so therefore they were OK. But often they were not.

They would tell me how they struggled in noisy classrooms. They would tell me how their self-esteem was impacted because they struggled socially to communicate with their peers. They would tell me that teachers would often refuse to wear FM systems, because “they could hear just fine”. They would tell me how teachers would refuse to look at the class and talk to the board thus denying them the abiliy to lipread. They would tell me how they struggled in sporting clubs because they could not wear their hearing aids while playing and how this made it difficult to socialise. Often they would tell me they felt dumb because they were struggling at school from communication issues and were labelled lazy or inattentive.

What became clear to me was that the level of one’s hearing loss was not really a good measure of the impact of the hearing loss. I know of one person with a so called moderate loss who was a speech assessor. He has a degenerative hearing loss which at the time was bordering on the moderate range. His job was to listen to recordings of telemarketers and coach them to be able to convey their voice better. Of course it became increasingly difficult to do this as his hearing loss worsened.

He would speak of the difficulties he had socialising in restaurants and bars where his friends liked to frequent. He would tell of the difficulties communicating in noisy environments and how this had steadily led to him withdrawing and keeping his own company. This led to depression, loss of confidence and the need for intensive counselling.

It always concerns me when people like to judge the impact of one’s disability based on it’s severity. It does not follow that a person with a more profound hearing loss will require more support. It just means that they require a different type of support but that support is every bit as necessary. Then of course there are the additional costs. The hearing aids, the batteries, the audiology, the listening devices, the repairs and so on.  Often it is those with so called lesser hearing losses that have the need for the most up to date listening technology and it ain’t cheap.

If this support is not provided what happens to these people. Perhaps they become unemployed. They become socially isolated. They  may need counselling and medication if their depression becomes severe. In extreme cases suicide is not unknown. You cannot judge an impact of a disability solely on its severity. By investing properly in these people so that they get the right support it can be argued that he greater social cost can be avoided and this is both financial and moral.

It is for this reason it concerns me that Morton, in his article, is suggesting that some deaf and people with a vision loss will be deemed ineligible simply because there is a desire to reduce costs. When one starts to try and judge the impact of a disability based on some perceived level of severity we are on rocky ground. And this rings true whether it be autism, intellectual disability, mental health or physical disabilities.

That is the whole idea of the social model of disability on which the NDIS is based. It is supposed to look at impact and challenges to social and economic participation. This cannot be assessed on the severity of disability alone. To do so is to fall into the trap of the medical model of disability and to fall into this trap will kill the NDIS stone dead. Severity is a dirty word!