Kangan Auslan courses are to be closed. For many years now Kangan has been a production line for Auslan interpreters. Many enrol at Kangan and upon graduating go on to study the RMIT interpreting course. Some of these have even gone on to study at higher level interpreting courses at  Macquarie University. The Kangan courses have been a very important feeder course for would be Auslan interpreters for many years now. And suddenly they were  gone!

Why the courses have ended comes down to money and the lack of it. Recently the Victorian State Government made savage cuts to TAFE funding in the State budget. My previous employer the University of Ballarat, which is both a higher education and TAFE provider, stood to lose $20 million as the result of the cuts unless they made drastic decisions. Within days of the TAFE cuts being announced the University of Ballarat had announced wholesale cuts to courses, reductions in dollar support for students and redundancies in the TAFE.  The TAFE funding cuts were not an inconsequential thing.

TAFEs all over Victoria were in the same boat as the University of Ballarat. Many courses have been cut and jobs have been lost. In such an environment it is not surprising that Kangan had to act quickly. They did and Auslan courses were among the first to go.

Unsurprisingly this caused uproar. Within hours of the announcement of the dumping of Auslan by Kangan a 20 year old student had set up a support group on Facebook which within a few short days accumulated 4000 members. The Deaf community were in overdrive, Deaf Victoria put out media releases calling for calm while they investigated the matter. They showed great leadership in coordinating responses from the various stakeholders involved. Facebook was alive with chatter. To put it mildly, there was an outpouring of outrage.

That same night The Greens Member of Parliament put a question to the Victorian State Parliament. The Kangan Auslan courses, said The Greens, were a Human Rights issue and suggested that dumping of the courses by Kangan was a breach of the of basic Human Rights by the Government.

Of course the Government were having none of this. They made it out that they were prepared for what might happen. They said that they had been negotiating to bring in trainers employed by NSW Deaf to provide Auslan courses that would fill the void. They were to offer subsidies to NSW Deaf. Apparently to ensure the swift set up of such courses. Clearly the Government had hastily set up their answers to the Greens question because NSW Deaf, technically, does not exist. They were referring to the Deaf Society of NSW..

This announcement took everyone by surprise. The grapevine went into overdrive. What on earth was The Deaf Society of NSW doing on Victorian territory? Why had Vicdeaf not been approached?  Why were they bringing in NSW Auslan trainers? Hell, the NSW Auslan dialect is different from Victoria. How would this work?. A representative from Kangan went on to the Facebook support page and made it clear that he knew nothing of this approach to “NSW Deaf” Confusion reigned.

The next day the Deaf Society of NSW issued a press release. They claimed that they knew nothing of the approach from the Government. They had not been contacted and they had not been offered any subsidies. What is more, the Deaf Society of NSW fully supported the retention of the Kangan Auslan courses. There could only be one conclusion, THE GOVERNMENT HAD LIED!!!

Of course the Government were incensed and put out a press release outlining what they believed to be the truth. The Government suggested that Kangan had advised them that as far back as 2010 that they intended to offload the AUSLAN course anyway. They described how, through the Government Department of Skills Vic, they had been working with both the Deaf Society of NSW and Vicdeaf to establish accredited Auslan courses.

WHAT THE? The Deaf Society of NSW had lied???? They are in partnership with Vicdeaf???? Were they trying to steal Kangan funding??? Everyone was totally confused and then Vicdeaf put out their press release. Vicdeaf acknowledged that they had been working with the Deaf Society of NSW and Skills Vic to establish part-time accredited Auslan courses. The  Deaf Society of NSW was involved because they are a Registered Training Organisation that is accredited to provide such courses. Vicdeaf implied that they were only targeting part-time students and not the full time students of Kangan. They went on record to state that they fully supported the retention of the Kangan full-time Auslan courses. A Kangan Auslan Department representative went on record supporting both the Vicdeaf and the Deaf Society of NSW in their efforts to establish part-time accredited courses for students that did not fit the Kangan criteria.

Whether or not Kangan knew of the negotiations happening between Skills Vic and the two Deaf societies is unclear. One would have thought, and hoped, that as a matter of courtesy both the Deaf Societies would have kept Kangan Auslan Department fully informed of their negotiations. Or perhaps they hid behind that old furphy of “commercial and in confidence” fearing that if they disclosed their intentions others would try and steal their thunder. We will never know.

Unwittingly Vicdeaf  and the  Deaf Society of NSW became pawns in the Governments strategy to save face. Make no mistake the Minister concerned, Mr Hall, would have had no idea of the negotiations between Skills Vic and the two Deaf Societies. When the Minister became aware of the potential uproar and the question that was to be asked by The Greens in Parliament his staffers went into overdrive.  These staffers would have delved deeply into the department to find an answer to The Greens question. They were clearly on the hop, hence they even got the name of the Deaf Society of NSW wrong. To be fair it is still not clear why the Deaf Society of NSW, in their first press release, did not mention the negotiations with Vicdeaf and Skills Victoria that had been taking place for sometime. They made it sound like they had  no involvement whatsoever. This clearly was not the case.

Quite frankly it was a shambles. The only people to come out of this with their heads held high are the students of Kangan,  Deaf Victoria and the Kangan Auslan Department. The Kangan Auslan Department must have been under immense stress, to their credit they have retained a calm, humble and dignified approach.

Both the Kangan students and Deaf Victoria have shown what can happen when passion is put to good use. The students have been awesome. In just over a week they have organised a Facebook support page that reached 4000 members. They have organised a website, a logo, T-shirts and protested calmly and intelligently. Deaf Victoria must also come in for high praise. Their professionalism has been fabulous. They have coordinated responses, called meetings and lent support to get rallies organised. The Kangan students and Deaf Victoria are a credit to all of Victoria.

Quite rightly both the Kangan students and Deaf Victoria have ignored the dramas of the Government and the two Deaf societies. They have, with staunch determination, kept focus. The politics is irrelevant; the focus has been on saving the Kangan Auslan courses. They should be proud and hopefully the powers that be will learn from their determination, honesty and calm dignity.

Take a bow.

*Footnote – Auslan courses in the Gippsland were also facing the scrapheap. Apologies that the Gippsland were not also mentioned in this article.

Recently I attended the excellent Deafness Forum Summit in Melbourne. I was particularly interested in the second day where Dr Anthony Hogan and Dr Paul Jacobs spoke about psychosocial issues related to deafness. There were some fascinating facts and ideas put forward. Dr Hogan, for example, spoke about the stressors of deafness. The isolation and the constant struggle to interact causes people who are deaf to become ill more often. In fact, if my memory serves me right, Dr Hogan suggested that the life span of the average person who is deaf is six years less than the general populace. He attributes this to the increased “stress” associated with deafness. Dr Jacobs spoke of “deafness specific” life skills and theories such as the 10 000 hour rule. Put simply Dr Jacobs research found that ‘healthy personality’ in  people who are deaf is influenced by the development of certain “deaf specific” skills. These might be using captions in a variety of situations or developing a level of assertiveness to deal with a variety of “deaf specific” circumstances. Mastery of these skills may never be fully achieved but development of “deaf specific” skills is important. The ideas of both Dr Hogan and Dr Jacobs are far more academic than I can explain in this article but to me it was fascinating stuff. I did, after all, develop the Successful Adults in Life Program for Young Deaf People back in 1999 which had a focus on, “Deaf Specific“,  life skills.  The disability politics in South Australia killed that one stone dead, but that’s another story.

But the quote that stood out for me among all others came from Dr Hogan. He was asked what he thought of the National Disability Insurance Scheme. He was, to put it mildly, extremely sceptical it would have any impact for people who are deaf at all. His rationale was that we are obsessed with equipment and technology and that these things are only a very small part of the equation for providing proper support and access for people who are deaf. Dr Hogan was alluding that we need to have a greater focus on the psychosocial needs as well because in doing so we provide the person who is deaf with a framework to be able to live within and interact with general society. He is right.

I lost my hearing around the age of 8. Firstly I was in the moderate to severe range later to become profound. The doctors and audiologists all suggested hearing aids. I remember endless trips to the Royal Adelaide Children’s Hospital and to the National Acoustics Laboratory for hearing tests. At first my parents were in denial and refused to consider a hearing aid even to the point of getting a second opinion. In the end it was obvious, a hearing aid was needed.

I was fitted with an aid and placated by my parents and the audiologists alike. “The aid is very small” they said, “No one will see it.” They reassured me that it was, “…the same colour of your skin”, that, “You can grow your hair long and no one will see it.” The aim of all this was to put me at ease and to reinforce to me that a hearing aid would not make me different. The reality is that the opposite was true. The very fact that I needed to camouflage my hearing aid reinforced that being deaf needed to be hidden. It was almost as if it was shameful.

But the overall message back then was that the aid was going to FIX me. And that by hearing better my problems would be largely solved. There was no support for me to deal with my anxiety at losing my hearing. There was no advice to me as to what hearing with an aid would be like and how my peers would respond. There was no training in the use of the aid and asserting myself when I did not hear properly. It was just a fitting and away you go.

No one advised my parents as to how to facilitate communication within the family. No one advised them of the frustrations I might encounter. No one provided support to my parents, who must have been going through extreme anxiety at the time.

No one told me that I might develop a certain amount of paranoia. Paranoia that develops simply because you don’t know and can’t hear what is going on around you. “Are they talking about me?”, “Are they Laughing at me?”, “Why are they staring at me?”. It got to a point that on the bus home from school I would go immediately to the back of the bus so that I could see everyone and make sure I was not the centre of the attention.

No one advised that upon losing your hearing you go from popular to also-ran. I was always good at sport and when teams were picked I was one of the first selected. Suddenly no one wanted me. I was picked last. No one advised me how to deal with the inevitable crash to my self-esteem that this would cause.

No one advised me that when I entered adolescence that the focus on body image would make me extremely self-conscious. I didn’t want to wear my hearing aids because it was uncool. Pressure on me from school and parents to wear my aids was intense. I would deliberately lose my hearing aids. “Accidently” drop them down the toilet and even fed them to the dogs.

It got to the stage that I would wag school. I missed 14 days in a row. I would catch the bus to the local shopping centre and sit in the centre toilets reading the newspaper from end to end. Eventually the school rang my parents to find out what was going on, I was sprung! There was no exploration of the reasons for my wagging school or my extreme response to try and avoid wearing hearing aids. I was sent to the deputy principals office and caned.

No one advised me of the change my deafness would bring to my voice. Unable to monitor or hear my voice I would shout. My voice became “deaf”. Of all of this I was unaware. I didn’t understand the snickering of my mainstream school when I addressed the assembly to tell them my soccer team had won six nil and that I had scored five goals. I was mortified.

No one explained to me that I would be self-conscious and unable to approach girls and ask them on dates the same as other guys. I would worry what they would think of me. I would worry of the rejection. Of course my deafness was to blame for all this, “No girl would want a deaf boy”. I withdrew and never went out. When my mates were starting to night-club I was in my safe haven in front of the TV.

No one advised me of the communication strategies that a deaf person might need for communication at work. No one advised me of prejudice that employers might exhibit when I applied for work. No one advised me of the difficulties of accessing university at a time when interpreters and note-takers were not available. No one told me that I would have to get out in front of my university peers and ask for a note taking buddy because the disability liaison officer of the time did not organise it for me as he had promised.

It is a wonder I came out of all of this in one piece. All I got was a hearing aid and I was sent on my way No support. No training in its use. No advice of its limitations. No advice of the personal and psychological challenges that I would have to confront.  I received a technology fix and a shove out into the big bad world.

These are some of the stressors that Dr Hogan is talking about. Some of us get through it and become strong and functioning human beings. Others do not and this is why incidence of poor self-esteem and the mental health issues are high amongst people who are deaf. Deafness is not just about hearing, it’s about overcoming and skilling the person who is deaf to deal with the various issues that will arise. It is about supporting families, developing communication strategies and about developing a level of resilience. Most of all it is about navigating the minefield that is deafness which goes far beyond improving hearing.

The NDIS is a wonderful thing but if it supports the deaf and only focuses on the technology fixes it will miss the mark by a long way. We cannot just say provide hearing aids, provide cochlear implants, provide captions or provide interpreters and that will fix it because it will not. Deafness is a social disability, no matter what age it is acquired.  If we do not build the psychosocial needs of the deaf into the NDIS then its benefits to the deaf will be limited. This is why we need a deaf expert on the working groups that have been charged with setting up the NDIS. Currently there is not one and it is much needed. Because deafness, it’s complicated, to put it mildly.

**** There is no doubt that there are similar psychosocial issues for other disability groups. What Dr Hogan says about the obsession with, ”fixing”, through technology may have implications for these other groups too.  Here is hoping that psychosocial needs get serious consideration in the setup of the NDIS

The NDIS got up this week to much fanfare. Rallies were held around Australia. I attended the Rally at Federation Square in Melbourne. The Square was a sea of red as people with a disability from all walks of life cheered on every announcement about the NDIS and let Australia know it is what they want and need. In Sydney an estimated 8000 people attended the Rally where Prime Minister, Julia Gillard, announced the roll out of the NDIS. People with a disability celebrated everywhere.

I have been a strong advocate for the NDIS since 2006. In 2006 I heard the late Dr Paul Collier, wheelchair user and quadriplegic, speak of the self-directed funding he received in Britain through the scheme that they have there. Dr Collier explained how he received money through the scheme and directed it to areas of his life that he felt were crucial. He didn’t need to wait for some agency to decide what he could get, he received his money and budgeted it for his own needs as he saw fit. I remember being in awe of his holiday snaps to Canada where he had used his funds to take a carer with him. It was inspiring stuff.

This is what we are seeking here in Australia. We want a scheme where people with a disability can direct their funding as they see fit. No waiting lists. No waiting to see if some agency believes you are a priority. Just a scheme funded in a similar way to Medicare where people with a disability can receive funds and use these funds to pay for carers, equipment, adjustments to their car so they can get about, funds for accessible taxis and so on. This scheme will open up the world for them. People with severe physical disabilities will be able to have a shower everyday rather than just once or twice a week if they are lucky. Carers who are often into their 70s and still caring for their disabled kids will be able to afford respite care thus greatly releasing the pressure on them.

In previous issues of The Rebuttal we have encouraged the Deaf and hearing impaired communities to articulate their needs as the NDIS is developed. It was true then, as it is true now, that the NDIS has been dominated by the needs of people with physical disabilities, care and respite. Nowhere were we hearing of the needs of the Deaf and hearing impaired communities. Not in the mass media anyway. Our deafness representatives had been active in putting in submissions to various enquiries about the NDIS about deaf needs but publicly stories are dominated by care issues and the needs of people with physical disabilities. It was pleasing to see that at the NDIS Rallies that the Deaf stood side by side with other people with disabilities.  Thus letting our pollies and decision makers know that we had a need too. In the last few months Deafness Forum had also been active and vocal about the need of the NDIS. They believe in “cradle to grave” support for people with a hearing loss. Deaf Victoria has also been extremely active.

After the Rally on Monday I was driving home. As you do when you drive your mind tends to wander. I started thinking about the needs of the deaf and the needs of those with physical disabilities. On the right shoulder was Gary Fireandbrimstone. Mr Fireandbrimnstone is tough, he was telling me there should be no compromise, the needs of the deaf are equal to anyone else in the NDIS and that we should not accept second best. On the left shoulder was Gary Reasonableanddiplomatic. “Surely”, said Mr Reasonableanddiplomatic, “People with severe disabilities should come first, they are a priority and the deaf can wait. We have Employment Assistance Fund to access interpreters and captioning in employment , NABS, free hearing aids til we are 26  and so on”  Mr Fireandbrimstone was having none of it, “Rubbish, our needs are less visual but no less important.” Mr Reasonableanddiplomatic disagreed, “..But we can get by til those with severe physical disabilities have their more pressing needs met.” This was the moral argument I was having with myself.

Now Facebook is a wonderful tool for evaluating moral dilemmas. I decided to put up a rather wordy status and see what responses I would get. The status read, “A question for the Deaf on the NDIS … There are parents who are in their 70s still caring for their disabled kids, there are people with physical disabilities that can get out of their house maybe once a week, there are people with physical disabilities that can get a shower twice a week if lucky … Can the deaf wait to get their needs met under the NDIS …. Are the issues for the deaf equitable … Or should the
mentioned scenarios get priority before the needs of the deaf are even considered? (and yes I am very much being a Devil’s Advocate.)”  Responses to this from friends generally were along the lines of, “Yes, but only if we have an ironclad guarantee that deaf needs will be met later.”

But one friend took umbrage to this statement and inboxed me. My friend was quite frustrated with me. It’s not often people call me soft in deaf politics but she did. She had this to say, “…You know I admire your work Gary. But sometimes you seem to need a crash course in politics. I can’t see that you have a role as Devil’s Advocate. The deaf need the strongest, single minded advocacy. They have always been sidelined and always will be disadvantaged by having an invisible disability. The HOH regularly deny that they have needs. The wider public do not understand the imperative. Yet communication is one of the single most important human needs. Now is not the time to suggest that others need help more. It is not a good tactic to play “reasonable chap.” Who demands more, wins. Wheelchair activist demonstrated that years ago.”  She will remain nameless and I have enormous respect for her. What is more, she had a point.

So I decided that I would put up another status and see how people responded to her hard-line stance. This is what I said. “Believe it or not I have just been chastised as being too soft in the NDIS approach and I have enormous respect for the person that did it so will try to summarise our discussions … Suggestion is that if we allow the other groups to take the high ground that the deaf will get left behind.. We need to be as loud and demanding as all the other groups , even unyielding in our demands … fair point .. We need stories that hit home and show the cause, in the same way as stories about people with physically disabilities are being prisoners in their own home ….100 Deaf stories that show the need for the NDIS ….What can we do to make the case more prominent??? Cradle to grave wont hack it, we need real life stories, real life examples ….Shock and awe tactics???? We could highlight the high incidence of mental health problems among the deaf perhaps? Dr Hogan on the weekend suggests that stressors of deafness mean deaf people are more likely to be ill and die six years younger than the general populace …Dr Hogan also suggests that our obsession with technological solutions means we forget the human and mental health factors of deafness. What is our campaign missing???”

Responses to this were generally supportive. Particularly of the need to get the stories of the needs of people who are Deaf and hearing impaired out there and understood. But there was one voice from Martin who was more cautious. Martin had this to say, “Not wishing to rain on your parade but … Please let us NOT become splintered in this process. One of the greatest things I got out of the Rally for the NDIS is the fact that we were together with one aim – to have our human rights met in an appropriate way. Yes – I agree that we have different needs and aspirations and yes they often differ disability type to disability type but fundamentally we have the same aim. And that is to be full members of the Australian community by being provided with the appropriate supports that allow us to work, travel, play and fully participate in our community. I believe we must grasp this opportunity for change as the disability community not as the disparate groups representing different types of disability. Yes we do need to be clear about what proper supports that individuals and groups need but let us still keep one voice. My fear is that as did happen during and after the Year of the Disabled Persons we will become fractured and separated along disability types. Once this happens Government will again appease various groups with tidbits but not address the whole issue, ensuring all people with disabilities get their human rights with dignity. Sorry about the soapbox but I am so proud to be a person with a disability after seeing all the different groups at yesterday’s Rally I don’t want that undermined.”

I have enormous respect for Martin too. He has been involved in disability politics since a little bit before when Noah built the Arc. He had a point too. In a single minded push to have our needs recognised do we run the risk of divisiveness and thus fragmenting the successful NDIS campaign? This is the dilemma, how do we push our needs hard without it looking like we are throwing our toys out of the pram. Martin is correct, the one voice is powerful. But not if that voice is not articulating our needs and other needs are dominating. We need that ONE VOICE talking about our needs and providing anecdotes of our needs on an equal platform. Now I agree that at the moment there is a crisis of care support and respite, it is really inadequate and should perhaps take priority early in the NDIS. But that does not mean the needs of the deaf and hearing impaired are less important. They need an equal and powerful voice.

It is worth noting that in the media releases that announced the working groups for the NDIS yesterday there was not one DEAF or hearing impaired representative there.  I later discovered that the intellectually disabled, who make up 62% of the disability population, did not appear to have a representative either. Apparently there is no representative for Aboriginals with a disability either despite them having important cultural needs in the delivery of the NDIS.

Yet on the working groups, as far as I can see, there are six groups directly representing carers and three representing physical disabilities. I have no problem with this but it suggests that the NDIS is being dominated by the issues of people with physical disabilities and care needs. Yet the deaf and Aboriginal groups that make up a significant part of the disability population have no direct representative. I know there are people on the working groups who are empathetic to the needs of the deaf but there is nothing more powerful than a direct anecdote to explain why the deaf have needs coming from someone who has a real life experience of what they are talking about.

I have a real fear too of the rapid rise of the terminology that suggests ‘Significant Disability.’ If you have been following the media releases you will see regularly that the NDIS is being designed for the needs of people with a ‘Significant Disability’. Who is going to decide what defines a ‘Significant Disability’? If the designers of the NDIS are predominantly people with physical disabilities and carers how can the deaf ensure that they have a voice that shows just why deafness is a ’Significant Disability’? Indeed an integral part of the Aboriginal experience of disability is their culture. Who is going to incorporate this into the design of the NDIS if there is no Aboriginal voice?

ONE VOICE … Yes! But that voice must be a voice that expresses the needs of all disabilities equitably. I have real fears that the current working groups will not be able to do that. We need to talk about it now to ensure we are not left behind. Be unyielding in this but at the same time support the needs of all the other groups. All we want is equitable representation, at the moment I do not see this happening.

With respect to all those involved in getting the NDIS up and running, it’s a big job!