Merry F#*king Xmas

meanIt was a really merry Xmas for the leaders of many of our Disability Peaks this year. The Abbott government, showing all the compassion that it is renown for, announced that many Disability Peaks had been defunded. This just three days before Christmas. For many that worked within these peaks either as CEOs, administrative workers or project officers,  Xmas came with the knowledge that they were about to be out of a job.

For those not in the know, Disability peaks are those organisations that advocate to the Government on behalf of people with a disability and their families. In the Deafness sector these peaks were Deaf Australia and Deafness Forum. Through the skilled advocacy of these organisations many programs have come about such as the Auslan for Employment Scheme that was later expanded to include live captioning. We have also seen steady progress and improvement in captioning and telecommunication access among other things.

Sadly both Deaf Australia and Deafness Forum are among the peaks that have been defunded. They are currently in for the fight of their life to stay afloat. In the short-term they are unlikely to have their funding restored. They will both need to work very closely together to ensure the needs of Australians who are Deaf and hard of hearing are heard. They must carry on without funding. A merger is on the cards.

This Government has no clue as to what it is like to live in Australia with a disability. It seems to not care that Australia performs horrendously in providing support for people with a disability. Why else would 45% of people with a disability live in poverty? People with a disability are among the most vulnerable in Australia yet the Government has them firmly in its targets. Meanwhile mega rich mining and media moguls continue to get tax breaks and abuse the system.

Cruelly one of the Governments targets is single parents. Currently as soon as a single parent’s child turns 8 years old single parents are being forced on to Newstart. They are being made to look for work. This requirement in itself can be very unfair but if your child has a disability it becomes even more so.

My friend is the mother of a child who is deaf and also has autism. She has been forced on to Newstart. My friend already works five days a week but with limited hours. Luckily she works at her son’s school but must be on call to deal with any adverse behaviors that might happen. Last week, as an example, her son head-butted a glass pane door of his classroom because he could not get in. It smashed and he cut his face all over. Said my friend, “ He was damn lucky not to have cut his eyes or a major blood vessel. Bled like a stuck pig. Added 20 years and too many grey hairs to count.”

While this sort of incident is extreme her child’s challenging behaviours are common enough. It means that my friend has to be available at call. She requires a flexible work environment which she, luckily, currently has. Her family is not close by to support her apart from her elderly grandparents who are unable to offer support. Her ex-husband has his own health issues and the bulk of her sons care falls almost solely on her. She gets no respite care from the Government because she cannot get this unless she is, going to hurt my children or myself.” The NDIS is currently not an option either because its not due to be introduced to her area until 2016, if at all.

At home she also has to deal with meltdowns. She is trying to assist her deaf child with language development. She is assisting her child with his education that is inevitably interrupted and challenged through autism and deafness. She is also trying to give fair attention and love to her other child. On top of this add the additional expense of broken objects and laptops that can be the product of behavioural meltdowns.

My friend does not get carers payment from the Government because – I don’t provide constant care in the home because he goes to school” She gets carers allowance that she must split with her ex-husband. This provides her with the princely sum of $56 a fortnight. Previously she got single parenting payment but now she has been shafted to Newstart she has lost $205 a fortnight.

AND to top this off, because she has been shafted to Newstart, she is expected to apply for ten jobs per week. This single mother who can be called from work at any time to care for her child, who has the sole care of a child who is both deaf and autistic, a child that has challenging behaviour at home and school that requires her constant vigilance, who also has the sole care of another child … This mother is expected to look for ten jobs per week! Why? Because the Government thinks she is a LEANER and somehow has the capacity to not only look for ten jobs a week but also work full time. As she so eloquently put it – “How f#*ked is that?”

This is what the Abbott Government wants from people who have next to nothing! Meanwhile the worlds richest woman, Gina, is floating on her luxury yacht, sipping an adult beverage whilst getting tax breaks left, right and centre. To top this off Dr Death Morrison has been appointed Minister of Social Services and our advocacy peaks have been defunded. AND the NDIS is about to be used as a pawn for the Government to push through its unfair welfare cuts! Indeed – How f#*ked is that?

 Merry F#*king Everyone!

All I Want for Xmas …..

imageI am tired. I guess after 30 years or so as a disability advocate you get that way. Sometimes the job is really demoralising. Last week this hit home in a way I have not experienced for a long time. I was attending a professional development workshop. This was my second week of attending such workshops having just attended a full week of various workshops in Perth. People at the workshop I was attending were having a moan about the Perth workshops from which we had just come. They were moaning about having to hear of the same information over and over again. Said one person, “How much longer do we have to keep hearing about Universal Design!”[1]

Normally I would not react to such comments. However, this time I took umbrage. I took umbrage because all the people at the workshop were disability practitioners. It is their job to ensure that such workshops are fully accessible. Now to start with I had to provide my own Auslan interpreters because organisers of the workshop had not thought to budget for access needs, despite asking if you had any on the registration form.

When I came to the workshop the layout of the room had given no thought as to where the interpreters would stand. No tables had been reserved so that the deaf person could be seated appropriately to use the interpreters. There was apparently a hard of hearing person at the workshop too. The sound system only worked at different points of the venue and their was no captioning. This was a problem for the interpreters too, because they had to stand at random points in the room and at certain points they could not hear anything.

Then of course one of the speakers was a person in a wheelchair. Tables had been laid out so that the person in the wheelchair had to weave in and out and around chairs in a way that would have tested a participant of the giant slalom. The layout would also have tested the patience of the blind participant with her guide dog. Even with her guide dog she banged into chairs and tripped over bags that had been left out with no thought to her access requirements. Planning for these things is what universal design is all about.

And here we had experienced disability practitioners moaning about having to hear about universal design again. YET they seemed incapable of implementing what is a very basic concept. Sure it takes a little bit of thought and planning but this is what these people are paid to do. It’s precisely because these people can’t implement the concept that we have to keep talking about it. Again and again and again! No wonder disability advocates get tired.

I sometimes wonder if it is all worthwhile. I often think that I would have loved to have a different job. A job at Bunning’s for example. I would love a simple job that I can go to and then come home and completely switch off. But this is never the case for people with a disability. They have to be constantly vigilant.

If you are a person in a wheelchair chances are you will be in danger of pooping your pants because some twit has used the accessible toilet as a storage room. If you are deaf chances are you are gonna miss your train because the platform has been changed and they have only announced it on the loud speaker. If you have some kind of physical disability a lot of Melbourne’s trams are of no use to you, whatsoever, because the only way to mount them is up steep steps. Many train stations are also inaccessible. People with a disability need to be constantly alert and prepared simply because our society is a series of constant barriers. It should not be this way.

Kelly Vincent, a person with a disability and a member of the South Australian parliament, touched on these issues today at Stella Young’s memorial. Vincent spoke about the tax-payer money of people with a disability not being used to provide proportionate access for people with a disability. People with a disability pay taxes so it is fair to say they expect value for their buck. But no, the barriers still exist and they are being broken down ever, ever so slowly. It is shameful really, especially for such a rich country like Australia.

Vincent suggested that sometimes it takes an event like Stella’s death t wake people up. Access is straightforward really. She used Stella’s memorial as an example. The trams to the venue were accessible. The organisers had picked a venue that was serviced by accessible trams. There were ramps to the stage for wheelchair users, Auslan interpreters and live captioning. The event was filmed and great care was taken to ensure that the interpreters were in shot and visible all the time. Captioning was live and on screen too for all watching on television. One speaker was even using a communication device and was provided with assistance so that she could stand safely at the podium. Access of this kind is possible everyday, but rarely happens. Stella, even in death, was teaching us all a lesson.

This is in stark contrast to our leaders, who even in a time of national emergency cannot think of access. All of us were shocked this week about the tragic siege of the Lindt Café that led to the death of two hostages. Prime Minister Abbott, addressing the nation on the Governments response to the tragedy, neglected to have Auslan interpreters at his address. And this happens all the time despite the policy that states that Auslan interpreters must be booked when information is being broadcast in relation to national emergencies.

And this is why disability advocates get so tired and demoralised. The same simple and basic mistakes are made time and time again. We repeat ourselves over and over and the response from the people we are trying to influence to change is – “Do we have to hear this all over again?” It seems all so futile sometimes.

And then something happens to remind us that people actually do listen and do care. Something reminds us that people are actually listening to and are influenced by what we say. In this case it was my 13 year old son. And it was nothing to do with disability access.

Last week, as the Islamophobes reared their ugly heads in the wake of the Lindt Cafe siege, my son was moved to post this on Facebook – “For everyone saying racist things to muslim’s, it is not their fault, nor responsibility, for these idiotic “extremists”. It doesn’t matter what religion you believe in, if you are a bad person, you will do bad things. Lets not put blame on innocent people”

This profound statement reminded me that what we advocates do is all worth it. It is worth it because we actually do have influence. My wife and I are big on social issues, anti-racism, anti-discrimination, pro inclusion and so on. And my lad with this little statement reminded me that people listen and people are influenced by the things we say. Eventually the message hits home and change happens. That my lad has been influenced by the values that my wife and I practice was a real boost for me.

Change has happened, and change will continue to happen simply because we advocates keep hammering the message home. Because if we stop, the alternative is totally unpalatable. But gee I wish some of my colleagues in the disability sector would set a better example. It is their actions that demoralise me the most.

But we continue because in the words of the late and great Stella Young,

“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.”

And that’s what I want for Christmas so the fight continues. Merry Xmas everyone!

[1] (Shortly before this my Auslan interpreter had interpreted a side comment from an attendee at the workshop – The MC was discussing Aboriginal issues and the person had apparently uttered to their colleague as an aside –‘I haven’t come here to talk about Aboriginal issues.” – The disrespect of this comment shocked me to my core.)

She Aint No Inspiration – A Tribute to Stella Young!

Stella‘But in case I get hit by a bus tomorrow, I want to make something clear. I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.’

Stella Young –

When famous people die we often ask our friends – where were you when …. ??? I was in a petrol station filling up when I saw on the TV in the petrol station that Princess Di died. I was at Manor Farm oval meeting a friend to play soccer when he told me that Elvis had died. I was a peanut in my Mothers tummy when Winston Churchill died.  I remember being really moved by Steve Irwin’s death. I watched his funeral on TV.  When Bindy gave her eulogy, all 8 years old of her, confident and articulate, I turned into a blubbering wreck.

I was on the train today when I heard of Stella Young’s death. I was flipping through Facebook, trying to pass the time before arriving at work. And there it was, someone posted that Stella Young had died. I thought it was a hoax. It was not possible. And then posts started to appear rapidly announcing her passing. And I cried. I looked down at my iPad and cried. I walked to work from the train station and I cried. I had to stop at a café to compose myself. I ordered a coffee and I cried. Even now as I type this the tears are welling up.

But I never met Stella in person. Like most people interested in disability activism I knew her through her writing. I knew her through her television appearances. I knew her as an editor of the now defunct Ramp Up disability Blog. It was not until today that I realised just how much her work, her views and her life had impacted on mine.

I had the privilege of being contacted by her when she was editor of Ramp Up. You see, unbeknown to me, she was a reader of The Rebuttal. She had read a piece that I had written about a conference organiser who would not provide interpreters for me to attend. I wrote of how I put pressure on the conference organisers by emailing them and all of the speakers who were to present at the conference. She loved the piece and wanted to publish it on Ramp Up. “The Rebuttal”, said Stella, “ awesome.” Coming from a person who is perhaps the best writer on disability of our age, this was high praise indeed.

When I read of her passing I was moved to post my own tribute to her on Facebook. The word that kept coming to me was Inspiration. I had to force myself to not use the word. People that followed Stella’s career would know of her loathing of the word inspiration. She wrote and spoke about this loathing often.

In a Ramp Up article Stella had this to say, “Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.”[1]

Until I read this piece I had always struggled to articulate the unease I felt about inspiration porn. I had always hated the photos of little disabled children struggling to walk on crutches or leg braces while TV celebrities wept as they looked on. I had always hated those videos of children who had received cochlear implants. Inevitably the child’s eyes open super wide as the implant is switched on and the headline screams “CHILD HEARS” These people cared and I hated it. Why????

But Stella had the answer. Said Stella of the motive behind inspiration porn, “…it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.”

And that was it in a nutshell. Inspiration porn is designed to make non-disabled people feel good, not people with a disability. The motive is nearly always to make non-disabled people think – “ ..thank fuck I am not like that.” And that’s why I and many other people with a disability hate it – Because it makes people with a disability out to be lesser beings. They are deficit!

I will always be thankful to Stella for having the courage to say this loudly and publicly. She put into words what many of us felt but could not or feared to articulate. Stella pointed out often that if people with a disability protest or show our revulsion for inspiration porn they are made out to be miserable bastards. They are made out to be ungrateful and unreasonable. But if you were told every day that your existence is only worthwhile if you are able bodied and normal – Well pardon me if there is an overwhelming desire to say – UP YOURS!

So Stella Young has died. Of course we must grieve. Grief is a natural process. But we must not grieve too long. We have the responsibility to carry on Stella’s legacy. Through her wit, her charm, intellect and sheer desire she has created waves for the disability community to surf. Let’s use Stella’s death to create waves, to knock down barriers and change attitudes. As we do this let’s have fun, lets party and even knit. Let us show the world that disability is, more often than not, a life worth living – VALE Stella – I promise you your legacy will not go to waste.

I could not resist closing this tribute with the delicious example of black humour from my friend Samantha Connor who is, like all of us, devastated at Stella’s passing:

“There is a very competent lawyer in WA, Prue Hawkins, who also has OI. She is older than Stella but also has stylish hair and a flair for fashion so is often confused. I tell Shaye that Stella has died, and she tells me she often saw Stella in the city – Shaye works in law. No, Stella lived in Melbourne – you saw Prue, I tell her. Then I get the giggles thinking how funny Stella would have found the thought of thousands of people spotting Prue or others with OI and coming up to them, mouths open, saying ‘OMG I thought you were DEAD’ – she would have found their shock and horror deliciously amusing.”

Indeed I reckon Stella, with her impish sense of humour, would have found this hilarious!

Let the celebration of her life begin !!!


The Art of Inclusion

untitledMany years ago as I was beginning to establish my career I was a support worker for a girl with a severe disabilities. One of the things that I had to do was take her to recreational activities. These activities were decided by my boss. My boss had this misguided idea that the activities were decided in consultation with the girl. Given that communication with the girl was difficult and that my boss could not communicate with her, this was a bit misleading. But she was the boss so I just went along with it.

Inevitably activities were things like craft groups, walking groups and things like that. My client was a young woman and participants were usually elderly women who were not disabled. They would would say a cheery hello to my client when she arrived and then proceed to ignore her for the rest of the day. They would go on their bush walk and my client would keep up the rear. Usually after ten minutes she would kick up a fuss because she did not want to walk any more.

The elderly ladies would look back as she screamed and kicked things. They would ooh and ahhh and shake their heads. They would then pick up the pace leaving my client sitting in a heap. Around this time I would take her home. The activities, said my boss, were best practice in inclusion. I would often point out that my client was not included. “She is just there.” I said. “like a passive object.” My boss didn’t take to well to this suggestion. Fairy tales are much more palatable.

This memory came back to me this week as I was attending the Pathways conference in Perth. Pathways is a conference held every two years for disability support people at Universities and TAFE from around Australia. There were several papers presented that challenged the concept of inclusion as we know it in education. The gist of it was that arranging support to allow people with a disability to partake in education is fine, but is it enough? Is it enough to focus only on their learning needs? Are we missing something?

It made me think of my education at school and later at University. I realised that there was very little of it that I actually enjoyed. Sure I had a few wild parties but even those, when I think of it, I wasn’t really included in either. I would go to a party, I would drink and basically just look on and watch. I couldn’t really follow conversations. Usually any conversations that I had were when some nice woman, nearly always a woman, would take pity on me and strike up a conversation.

This conversation would usually be quite stilted. One because I had to lip-read, not an exact science, and two because the parties were usually noisy and being deaf with a deaf voice meant that it was hard for people to understand me. I am easy to understand when it is quiet, but when it is noisy I struggle to modulate my voice. I ether talk too loud or too soft. Looking back, even though I got sympathy sex from time to time, it was exhausting.

Then of course there is the actual learning. The first time I went to university was at the old Salisbury College of Advanced Education in 1984 to study teaching. I met with the head of the school to discuss my “inclusion.” All that could be done was to ensure that I sat at the front so I could lip-read the lecturer and to remind the lecturers to look at me and not cover their mouths. No interpreters, no note-takers – Nothing! I didn’t last long.

Then I went to Mt Gravatt College of Advanced Education. I got interpreters there and note takers. I was even involved in the student activities organisation committee. I attended numerous meetings and understood nothing because there were no interpreters for these. If there was a shortage of interpreters, which was often in 1985, I inevitably missed out because – I spoke well. But at least I had access to learning material. It was a start.

Three broken legs later in 1986 I gave up the ghost and returned to Adelaide to study social work. I attended the University of South Australia. I met with Dick, the DLO there, who promised me the world. He was gonna organise me a note taker buddy he was. He was gonna get me lecturers note he was. He was a fucking star, brilliant, he did fuck all. So much, in fact, that after four days at Uni and no note taker, no buddy and no notes I had to stand out the front at the lecture theatre and ask for help.

Help was forthcoming. After all these were future social workers. Imagine if they didn’t want to help, the industry would be screwed. But the help was sporadic. My buddies would forget to give me notes. They would rush off to the next lecture. I was always chasing them up. It was not ideal. And there were still no interpreters.

To be fair the University later pulled out all stops. They tape recorded lectures for me and Dick’s secretary would type them up. Problem was she was very busy and the notes came two weeks later so that I was forever playing catch up. They paid someone to take notes for me too. BUT there was still no interpreter.

Everything was focused on ensuring that I got access to learning material. I wonder if this is still the case today? I mean, even though I can get interpreters now, their use is in lectures and group work. If I get note-takers, it’s for lectures and group work. If I get access to technology, the focus is to ensure I get access to information during lectures and group work.

What the literature generally shows is that students with a disability are thankful for support, but the support is often not enough. A theme that comes up often is attitudes of other students who are non-disabled. Students with a disability want to be part of the bigger picture. Not feeling equal and included with their peer’s impacts on their enjoyment and motivation to continue with their studies. Data sadly shows that retention of students with a disability is much lower than those who do not have a disability.

Often just learning is not enough, there is a real desire to belong. Apart from the desire to belong one needs to consider how much having access to peers actually helps ones education. Peers actually talk about what they have learnt. They see things from different perspectives and angles. Having access to natural social interaction allows students with a disability to expand on their learning.

There are many other factors that contribute to retention rates of students with a disability. Sometimes it comes back to learning styles and the needs of specific disabilities. Sometimes students with disabilities necessarily learn differently. University learning is known for its rigidness. Sometimes there are strict and inflexible requirements like the ability to observe, hear or stand. These are called inherent requirements and all are developed with no thought as to how a student with a disability may have developed different skills to complete tasks.

The inflexibility of some academics to bend these requirements is legendary. But students with a disability often simply do the same thing differently. For example nursing requires the person to stand yet there are apparently nurses in wheel chairs in America. I heard a story of a nurse who is a short statured person, she carries a step ladder with her to ensure she can reach where she normally might not. Inherent requirements in Australia have not been developed with any of this in mind.

Inclusion is complex. It is not just about being there. Some people are quite happy to just attend classes every day for four years to get their degree but most people are not. People with disabilities want to belong, they want to experience new things and they want to enjoy. What became obvious at the recent Pathways conference is that inclusion is a holistic concept and if it is to be successful a whole range of issues beyond simply learning need to be factored in.

I can hear the Abbotites now screaming that it will cost too much. All I can say to you is that people with a disability not completing their study will cost more. They will get low paying jobs, they will rely on Government hand-outs and what’s more the money spent on their further education is wasted if they do not complete it.

It’s time to review the art of inclusion. Urgent investment is required

United States of Australia

usaThis year hospitals have become my second home. In a period of 14 months I have had five lots of surgery. I first had a knee clean out. I then had my gall bladder removed, something I wrote about in Gary and Mellisa’s Excellent Adventure. Unfortunately when the gall bladder was removed two gallstones were stuck in the duct and I had to go back to surgery two days later. Then in May this year I had a spider bite and had to have surgery to cut away the infected skin. Finally, last month I had surgery on my elbow. In between all of this surgery I suffered from depression, which also necessitated a visit to hospital.

So fed up has my wife become about my love affair with hospitals that she has threatened to divorce me if I go under the knife again. It’s not looking good cos I have now injured my foot and am hobbling about. Single women out there looking for a partner that can cook, I may be on the market shortly.

But hospital visits for the deaf are no laughing matter. Three of my experiences with hospital required me to go through emergency. Now being deaf and going to hospital brings with it the inevitable communication issues. Diagnosis is critical. Diagnosis requires the patient to answer any number of questions. Get it wrong and, well the consequences are not worth thinking about.

Each time I attended emergency, even though I requested it, an interpreter was not provided. When I had my mental health episode I was treated at home. Again I requested interpreters and these were not provided. My poor deaf wife had to do the interpreting for me. It’s not a great situation.

The other times I went to hospital I did so under private health. For the first knee surgery I had an interpreter there from start to finish. This was funded under the National Auslan Booking Service (NABS). When I awoke the interpreter was smiling down at me from the bedside. It was perhaps the only time I felt truly relaxed about a hospital visit.

For my elbow surgery NABS would not provide an interpreter even though it was under private health. Why? Because I was staying overnight and they don’t fund interpreters if you stay overnight. I asked if they could just be there pre-surgery. Nope, didn’t fit the guidelines. Luckily Epworth Hospital saw fit to book an interpreter any way. But as you can see, even with private health, access to an interpreter can be a bit of a lottery.

It worries me. It worries me because not all deaf people have my language competency. Some do not speak well. Some may have literacy issues. For them an emergency visit to hospital can be fraught with danger. Misdiagnosis is a real possibility. Hospitals expect families to interpret but when you have an emotional attachment to the patient this can be highly inappropriate. Imagine having to tell your deaf dad he is going to die – it has happened. Pen and paper don’t hack it either.

Luckily for me I live in Victoria. Representing me I have Deaf Victoria. Deaf Victoria are on the ball and are currently in negotiations with the State government to trying and improve access to interpreters at hospitals throughout Victoria. This is advocacy at its best.

Deaf Victoria knew that talk is cheap. Writing endless letters to hospitals and Government Ministers often ineffective. They realised that to really make the Government and hospitals take note they needed evidence. So evidence is what they got. They consulted with the Deaf community and produced a thorough report on the issues. The report did not make for pretty reading. This report, with its recent and detailed evidence, is what they are using to negotiate improved access to interpreters at hospitals in Victoria.

Appallingly, the research found that:

“ In 62.5% of respondents, no Auslan interpreter was provided at all. In most of these cases, an adhoc way of communication was found, mainly pen and paper, guesswork, gesture, the use of family or friends and reliance on lip-reading.”

Scarily the report also found,

“One third of the sample was forced to rely on family and friends to interpret, and a large number of these family and friends were often Deaf themselves.”

Clearly the lack of access to interpreters and clear communication at hospitals is rife. Reliance on family and friends for communication support is common, even if they are deaf. It is a recipe for disaster. We can only hope that someone does not die or get severely injured before our Government and hospitals see the light.

I am so glad that Deaf Victoria are working on this one. It made me realise that a lot of issues that impact on Deaf people and people with a disability are really State based. Access to education, counselling, recreation, hospitals, mental health services and the like are all controlled by the States. We in Victoria are lucky to have Deaf Victoria funded and working for us. Not so many other States where State based advocacy remains unfunded and reliant on volunteers.

The more I think about it the more I think we should be pushing for stronger State based advocacy. A national body sounds great but the reality is that the real work needs to be done at State level. National bodies have, arguably, next to no influence on State issues. Maybe, given that Deaf Australia and Deafness Forum might be unfunded next month, we won’t have the benefit of a national body any way. Perhaps funded State advocacy groups could form an alliance to present a united front on issues that have a Federal focus?

Even with the NDIS the focus is on providing at State level. Clients accessing the NDIS need strong State and local advocacy so that the States and Local Governments make the necessary improvements to local services and infrastructure. There is no point having a well-funded package from the NDIS if none of the services and facilities are accessible. Who is doing this advocacy?

It may well be time for the States to step up. For me I am lucky to have Deaf Victoria, long may it continue.


drainCommunications Minister, Malcolm Turnbull has announced a quarter of a billion dollars in cuts to the ABC and a further $56 billion to SBS. Of course we all know that these cuts occurred despite promises from the PM to the contrary. The cuts add to the many others that we were told would not happen. They are part of the lie that Australia is in economic meltdown. We now know that the LNP lied about this so called economic crisis leading up to the election. What we also know is that many of the cuts that the LNP want to make are not necessary. Sure, there probably was a need to tighten the belt a bit but not on the scale the LNP want to. The problem is that these unneeded cuts are impacting everywhere and we are all living in a pool of uncertainty.

The cuts are impacting on services and support for people who are Deaf and hard of hearing. Indeed Karen Lloyd, writing in her Blog this morning, has put out an impassioned plea to the Deaf community to save Deaf Australia. As The Rebuttal has suggested twice this year, both Deaf Australia and Deafness Forum are under threat. The Government has seen fit to restructure our disability Advocacy funding and it is a very real possibility that both will lose their funding. The Rebuttal alluded to this on June 9th and again on September 9th.

In her article Ms Lloyd eloquently explains why. I will list some of the key points that she has made below:[1]

  • Many national organisations representing people with disabilities are about to lose their funding, including Deaf Australia ….
  • If this happens, Deaf Australia could be forced to return to what it was in the 1980s, a small volunteer-run organisation with no funds.
  • The gains we have made will be eroded. The onslaught has already begun: just a couple of weeks ago the government introduced a bill into Parliament seeking to wind back compulsory reporting and other protections of TV captioning.
  • In a nutshell, instead of funding 13 national disability representative organisations as they do now, government wants to fund seven.
  • Five organisations currently funded will likely continue to be funded. Eight will be out in the cold.
  • Each of the seven organisations/consortiums will get $300,000 per year.
  • So if there are, say, 15 organisations in a cross-disability consortium, then each will perhaps get $20,000. If the consortium’s application is successful; it might not be, in which case they will get nothing.

Ms Lloyd confirms in more detail what The Rebuttal has been suggesting, mainly that there has been a competitive tender and “Consortiums” of organisations have applied for the new funding. If an organisation has tagged itsself to a “consortium” that is not successful with its funding application then they will get NOTHING.

And this is what the LNP cuts have done. They have put many valuable organisations like Deaf Australia and Deafness Forum at risk. According to Lloyd, the Government has done this as a way of. ‘encouraging’ the disability sector to ‘organise itself’. As Lloyd notes, this is rubbish. The Government has done this, they say, simply because they think the need for advocacy will be made redundant by the NDIS.

Of course this is rubbish too because not all disability issues come under the NDIS. Infrastructure, employment, education, captioning and the like are all issues that the NDIS will not influence. There will always be a need for strong advocacy. I am not confident that a “consortium” will necessarily have the resources or the know how to represent each of the diverse and unique disability groups that exist. For all its posturing the Government is simply – CUTTING COSTS!

It is possible that both Deaf Australia and Deafness Forum will survive. We will know in December. I am not hopeful and I think the future is very bleak. It is unfortunate that Ms Lloyd’s piece has come so late. There was not a lot that could have been done beforehand by Deaf Australia and Deafness Forum without the fear of upsetting the decision makers. Deaf Australia and Deafness Forum have truly had their hands tied. They were relying on independent bodies and individuals to advocate for them.

To be honest with you, the response of the community to the two previous Rebuttal articles about the future of our Deaf peaks was poor. There were no more than 50 or 60 hits per article. In contrast the article on deaf parenting had 3500 hits. Apathy towards our Deaf peaks would seem rife.

BUT where there is life there is hope. Now may well be the last roll of the dice. If the community cares about the future of our  Deaf peaks and want to keep the Deaf and hard of hearing voice strong, they must do something. I urge the community to do as Ms Lloyd suggests below. If they do not, they may well regret it.

Says Ms Lloyd:

Everyone can help, whether you are disabled or not.

Send an email to Kevin Andrews, Minister for Social Services  and to Mitch Fifield, Assistant Minister for Social Services

Tell them:

The new Sector Development for Disability Representative Organisations funding model will be disastrous for millions of disabled people and is the wrong thing to do. The government needs to throw it out and develop a new model that looks after everyone fairly, not just a few selected ‘population’ groups and service providers.  Until government has done this, the current National Secretariat Funding model needs to be retained.

Remember to include your name in the email, and something in the subject field, e.g.: Funding for disability representative organisations.

And send a copy of your emails to your local Member of Parliament. Don’t know who your local member is or their email address? Find out here:

To find your local MP’s email address go to:

Please do it NOW! Before it’s too late!

Sadly, I fear it may already be too late.

Inclusion, Inclusion, Inclusion

inclusionImagine that you are an event organiser. You are arranging a special event for people with a disability. The event is to be a celebration of all things that are good about disability. Awards will be given to inspiring, innovative and passionate people with a disability. These people have taken on the world and achieved great things. This is despite living in a world that is largely not accessible or inviting to people with a disability. The big moment comes to announce the award for Disability Employee of the Year.

The winner is Joe Wheelie, a wheelchair user. Mr Wheelie has risen to be the boss of one of Australia’s premier IT companies. He take’s every opportunity to promote people with a disability as a marketable pool of employment with skills of value to employers. Mr Wheelie is known all over Australia for his passionate advocacy. A flamboyant Mr Wheelie lets out a whoop as his name is read out as the winner. He wheels himself excitedly up to the stage. The problem is that he cannot get up on the stage because event organisers have neglected to consider access to the stage for wheelchair users. Oh the embarrassment!

And although the scenario that has just been described is entirely fictional, a similar scenario actually happened a few years back at an event organised by one of Australia’s premier disability groups. One can almost forgive an organisation that has no experience in disability for this type of faux pas; but when it happens at events that are organised by so called disability experts, there can be few things more humiliating and embarrassing.

Sadly it happens all too often. We people with a disability are constantly required to check whether an event is accessible. As a deaf person I have to constantly ask whether captioning or Auslan interpreters will be provided. More often than not, even at events that are targeted towards disability audiences, they are not.

What is worse is that I am often asked to pay my own way. Disability event organisers will say – “Oh but Gary, surely that is the responsibility of your employer, can you not ask your manager to cover the cost.” Or they will say – “I am sorry but we cannot possibly cover the cost, it will affect our profitability and we cannot run a business like that.” They will then proceed to offer me free registration. The free registration is on the proviso that my employer pays the cost of interpreting. The cost of the registration is sometimes actually more than what the interpreters might cost, it’s crazy.

What really pisses me off is that people seem to think providing access to people with a disability is some kind of charity. Let’s not forget that when people with a disability attend events that they bring with them considerable knowledge and skills. They have something to contribute that is of value to all participants at the event. Be it professional or personal experience, people with a disability have walked the talk. There is much that can be learnt from participants who have a disability. It’s a reciprocal relationship and the cost of access is an investment to tap into the knowledge and skills of people with a disability.

Organisations and programs that have the objective of promoting and supporting people with a disability need to walk the talk. When they organise events they need to ensure that these events are accessible. They need to be demonstrating what disability access is all about. It is not always a cost, sometimes it is simply about good planning. Like ensuring there is a ramp to the stage!! How many of these organisations will budget each year for catering at events but not for access? Far too many that is for sure.

The mind boggles really. Food is always seen as a way to attract people to events. Every budget will always have X amount of dollars for food. Often the catering for events is actually quite extravagant. There will be finger food, salmon wraps, wine, beer and an assortment of enticing cakes. Make no mistake the first thing that most people look for when they are attending an event is whether it is catered. The smart event organisers build the catering into the cost of an event so that registrations cover the cost. Why not build the cost for disability access into the budget of events? I can tell you, it rarely happens. Access is an afterthought.

And why should we limit access just to events that are arranged for people with a disability? Why do we not push hard to ensure mainstream events have access too. Many events receive funding from Governments – Federal, State and Local. A pre-requisite to receive funding for these events should be to demonstrate a disability access plan. Can’t demonstrate it – No funding – Simple as. This would mean events like film events, arts events, festivals and the like are all providing access.

It’s simple really. You plan a head. If a fee is going to be charged, add a levy to that fee so that disability access costs can be covered. If you have an event where 5 thousand people may attend then $2 a head will generate $10 000. If it is a smaller event just for an hour or two, perhaps a levy of $5 will help to meet access requirements. This levy will not always be used, bank it and invest it for the next event. It can be used for accessible toilet hire, accessible transport where required, interpreters, captioning and so on. We really have to think smarter.

But accessible events are not just about money. Sometimes it is just about thinking laterally. For example one parent asked me to ensure there was a quiet area where they could take their autistic child should distress occur. Issues like accessible parking, accessible toilets, ensuring access to rooms, buildings, doors and so on do not require money – they just require good planning and foresight.

So next time you are planning an event think access – Most of all plan ahead! If you know that you will hold events, budget for access requirements as early as possible. If there is going to be a charge, consider adding a few dollars to each registration to cover the cost of access. If need be start applying for grants and sponsorship to cover disability access and do it early. Think forward, think smart!

It is simple really. Let’s make our world more inclusive. It really is not that hard!

For more information on planning accessible events go to:

Hello! – I’m Over Here

ignoreI am a cranky disability advocate today. It’s good that I am cranky. Crap happens to people with a disability in Australia every day. I often say to myself that when I stop being angry about this crap then it’s time for me to give it away. Well I am still angry so I guess retirement will have to wait. God damn it!

This morning I woke up to discover that Jetstar had, again, treated someone with a disability with disdain. It seems that there was a woman who has cerebral palsy who couldn’t get access to a standard aisle wheelchair. So to get off the plane the woman’s sister had to carry her some considerable distance. It seems no one from Jetstar offered to help as the woman lumped 40 kgs of dead weight human over her shoulder and set of for the terminal. Of course this is my rough interpretation of what happened because I had to access a Channel 9 Youtube video without captions and the voice generated ones are near impossible to decipher. Nice one Channel 9!

So that started my morning. I was calmed somewhat with some funny Facebook memes about every ones favourite object of abuse, Tony Abbott. Tony, if you recall, threatened to shirtfront Russia’s President Putin. In response Putin has sent his navy full bore towards Australia. Talk about boys toys. The memes came thick and fast. The gist of them was “Well you did say you were gonna stop the boats!” hahahahha … My humour was short lived.

My wife dropped me off at my destination. I was to have training about disability strategies for employment. It included digital access which is one of my key areas of expertise. I arrived at the venue which is disability friendly, or so they say. I am guided to the training room, which is upstairs, and has no lift. Kind of odd for disability training, but that’s the world we live in. I am early by thirty minutes, a rarity. I help myself to the instant coffee and settle down to catch up on emails while I wait.

Training starts at 9 am. I get out my phone. There is a message for me sent at 8.30. The message is to let me know that my interpreters for the day have been cancelled because one was sick. EEEEEEEEK … its now 8.50. And I am just about to commence training and my interpreters are not coming. I send a message to the booking agency and ask why they didn’t contact me before cancelling.  As a deaf professional I have a wealth of contacts, and I pointed this out to them.  I told them that I would have liked the opportunity to work with them to at least try to find a replacement interpreter.

They simply replied that OHS meant that they could not let the other interpreter work alone. I am, of course, sympathetic to their predicament but I am furious that my needs as a professional have been disregarded. What if this was a job interview? What if I was the person providing the training? What if I was advocating for someone? There are a whole host of scenarios that come into play. None of them seem to have been considered.

Ok I get it that we have to protect interpreters. I have seen the damage that RSI has done to many. BUT what about protecting me and other deaf professionals? What about working with me to resolve the problem? I imagine that they were told early in the morning that the interpreter was sick and could not make it. Why not contact me there and then to let me know so that I can begin to see what options that I have? None of this happened and I was left in the lurch. Deaf people need protecting too! But that’s seemingly how things work in this country – The person with a disability is thought of LAST! This is wrong!

I have to point out here that the booking agency was not Auslan Services. In fact I contacted Auslan Services once told of the cancellation. They went into overdrive to help me. Alas it was too late. What really bugs me is that, just with my own contacts, I found someone to replace the sick interpreter. BUT the stupid agency had cancelled everything! If only they had contacted me earlier. Yes I’m pissed and calling the agency stupid is probably harsh, but that’s how I feel!

And it wasn’t the first time that something like this had happened this week. In my work I get invited to a whole host of disability things. I try to attend as many as I can that are relevant to my work. One such function was organised by a professional body that works extensively with people with a disability. Oh I wish I could name them, but alas lawyers are rich enough already.

Anyway, this body was putting on a wonderful seminar that focused on organising specific support for disability. There were wonderful topics within it and I simply had to attend. There was an online registration form which I dutifully filled in. It asked if I had any access needs. Cool! I stated the need for Auslan interpreters. I was looking forward to this seminar.

No less than ten minutes later I received an email thanking me for my registration. By golly this mob were efficient I thought. And that is where my joy ended! Just after thanking me for my registration there was this ….

“… We note that you have requested Auslan interpreters. As we are an unfunded professional body can you please ask your manager to cover the cost of interpreting?”

They are certainly unfunded but the professionals that they represent come from some of the wealthiest organisations you can imagine. $50 from each of them would have covered the cost with enough for a bottle of expensive whiskey after. I pointed this out to them, rather more diplomatically. I pointed out that I requsted Auslan interpreters in good faith because the registration form asked me what access needs I had. I suggested that if they all pooled funds that the cost could be met easily. I also pointed out that my $6 000 Auslan for Employment grant didn’t go very far. I pointed out that my employer already supported me above the call of duty. “Let’s discuss a pooling arrangement” I said. The reply that I got … What reply? I am still waiting.

Let me just remind all these organisations and professionals that work in the disability field that they are there for people with a disability. We are not there for them! They get paid a healthy salary and while I understand shit happens and things go wrong, at least show us the courtesy of early and proper communication. As a professional who happens be to deaf I worked bloody hard to get the access that I have today! There is a simple dictum that business live by – It is simply that the customer is always right – the customer comes first. While I and other professionals who have a disability are happy to compromise, and always do, there is a limit. Don’t treat me and others like a nothing – We are the very reason that you exist. GET IT TOGETHER!


With apologies to the many wonderful disability professional, both disabled and non-disabled, you know who you are and you certainly do not deserve to be the subject of this rant!

The Curse!

bookApple computer founder, Steve Jobs, wouldn’t let his kids have access to an iPad, iPod or iPhone. The guy responsible for some of the most innovative technology ever limited his kid’s access to technology. Said Jobs, when asked about his kids using an iPad, They haven’t used it. We limit how much technology our kids use at home.”

In the Silicon Valley it seems that this is a trend. So much that executives that work within the famous tech hub actually send their kids to a school where they have no access to computers and technology. Said one executive, “…we have seen the dangers of technology firsthand. I’ve seen it in myself, I don’t want to see that happen to my kids.” The author of the article from which this quote was taken from pointedly suggests, “We were the last generation to play outside precisely because we didn’t have smartphones and laptops. We learned from movement, hands-on interaction, and we absorbed information through books and socialization with other humans as opposed to a Google search. “[1]

Technology can be a curse! My kids and technology drive me insane. They are forever on my phone, my iPad or the family computer. They are forever distracted. They steal my work equipment like my iPad and phone and download programs like Snapchat to them. It is not uncommon for my phone to buzz at 11pm and there is a Snapchat pic of some female teenager in an alluring pose being sent to my elder son.

Have you ever been looking everywhere for your iPad so you can check Outlook and plan your day for the next day, only to find it missing? You then discover one of your kids has taken it to the toilet and has been doing their business while Snapchatting for the last 30 minutes. This happens to me all the time. The last straw came for me when the iPad went missing and I discovered my eldest had taken it to the bathroom with him and was actually having a shower. In desperation I passworded all my equipment and warned my kids not to touch!

Oh God! What happened next …??? “But Dad I need a phoooonnnne.” or “But Daaaddddd I need my own computer!!! The eldest, having lost his phone for the umpteenth time, has stolen one of my old prepaid phones. He puts it on wireless and then spends all night and half the morning on the internet chatting with his friends…99% girls. It got to the point where to stop him I have had to take the phone connection away and hide it.

Now if kids don’t have a Smartphone it is like … “Oh my god but what about strangers????” “What if they are in danger????” … “What if they need me???” Last I looked the world is pretty heavily populated. Most of my friends from school are still alive despite the absence of technology in their generation. Did you know that for the average person to get harmed walking down the street they would have to wait 750 000 hours.

I am well aware that technology has been a godsend for the deaf. When I started work I had no email, no phone access, no text, no Skype and as a consequence very few career opportunities. The deaf of my generation had to work bloody hard to get where we are today. Yes, technology has helped and I am thankful for it.

But it is not all good. Arguably technology has meant that we have all become less sociable. Rather than meet face to face we seem to spend all our time sending texts and chatting through any number of program of like Facebook, Snapchat, Skype, Viber and Instagram. Conversation is often just habitual rather than needed. It is largely meaningless conversation 24/7 and right at our fingertips.

Arguably some aspects of technology have had an adverse effect on the Deaf community. Not too long ago the only way that Deaf community members could meet was face to face. Friday night club nights were a must. They were something everyone looked forward too. For a time in the late 90s and 2000s one could argue that Deaf community members got so wrapped up in technology that they forgot the joys of real human contact. The spirit of the Deaf community got lost in cyberspace.

In a round about way it reminds me of research done with baby monkeys. Two baby monkeys were part of a project. One was raised with its mother, another by a furry mannequin. They were both brought up with the same food and warmth. However, the baby monkey with the mannequin lacked interaction that the baby monkey with the real mother did not. Not surprisingly the baby monkey reared by the mannequin died.

To me that is bit like what happened with the Deaf community when technology exploded. People were able to get in touch with each other at will and they did. However, because they were communicating readily, members of the Deaf community were meeting face to face less. That human contact and warmth went missing and the Deaf community became increasingly fragmented.

While technology is still an important part of a Deaf persons armour, thankfully the Deaf community has recognised that nothing beats meeting in person. After a period where it seemed that the Deaf community was dying, in recent years the Deaf community has grown more vibrant.

The Deaf community has recognised that nothing beats real face to face communication. The community has recognised that its strengths are in its institutions like the Australian Deaf Games, Deaf clubs and its history. Deaf sporting events, once poorly attended, are thriving again. The curse of technology, in my view, very nearly contributed to the demise of these wonderful Deaf community institutions.

In my mind and in my car,

we can’t rewind we’ve gone to far.

Pictures came and broke your heart

Put down the blame on VCR!!!

These immortal lines are taken from the hit song Video Killed the Radio Star. The song touches on the impact of technology. In this instance the song hankers for the days when music was music and didn’t rely on video. Well I want the days back where human interaction was just that and was not superseded by our unquenchable thirst for communication through technology.

Arguably communications technology, for all its benefits, has had an adverse effect on the whole of society and contributed to increasing fragmentation. This is particularly so with our kids. As the author of the article quoted at the start of this piece asks – So, should we be more worried that we are robbing our children of the ability to Snapchat and play “Candy Crush” all day if we don’t hand them a smartphone, or should we be more worried that we would be robbing them of a healthier, less dependent development if we do hand them a smartphone?

I say put that phone away and regenerate the human touch, get outside and play!


Going Backwards

imagesThe 1980s and 1990s were a heady time if you were a disability advocate. Particularly in the early 1990s when the Disability Discrimination Act was introduced. Although the DDA is in drastic need of upheaval now, at the time it sparked many changes and campaigns. If you were deaf you would have seen the introduction of programs like Telstra TTY rental scheme, the National Relay Service, rapid increases in television captioning and the provision of support such Auslan interpreters for university and TAFE. Young people who are deaf take these things for granted now but the pioneers of the 80s and 90s can well remember what it was like to have very little access of any kind.

We should remember that these programs did not come about on their own. They came about because people who are Deaf lobbied their arses off. They wrote papers, campaigned and even took big multinationals to court and won. Yet despite these gains Australia still lags behind many comparable countries in terms of disability access. There is still much that needs to be achieved and we should never rest on our laurels. Particularly so with the current Liberal Governments across Australia who are hell bent on cutting anything that hints of welfare.

Indirectly Christopher Pyne is doing his best to make higher education inaccessible to people who are Deaf and people who have a disability. Mr Pyne, in his quest to Americanise our uiversity system, is trying to introduce a system that will lead to university degrees costing in excess of $100 000. Indeed, if Labor are to be believed, people who aspire to become a Vet will have to cough up in excess of $470 000. They will be paying this off well into their retirement.

This effects people who are Deaf and other disadvantaged groups because these people already are among Australia’s lowest earners. How many of them are going to want to go to university knowing that they will have to spend the rest of their lives paying off their degree? Once they graduate they still face an uphill battle to get employment. It is not for nothing that 45% of people with a disability live at or below the poverty line in Australia. Pyne’s proposals are going to make this worse.

In my early years as an advocate I spent a lot of time working towards making higher education accessible for people who are deaf. I sat on committees, I fought with my own university, I wrote to MPs and argued with the Vice Chancellor. I was on the Premiers Disability Advisory Committee and used every opportunity that I could to put the issue of access to higher education on the table. There were many other deaf students of the time that fought for university access just as hard.

And now with the short sightedness of a Minister who thinks most women only study cheaper degrees like nursing or teaching, we are about to see university education again become inaccessible to many people who are deaf or have disabilities. Not because universities won’t provide support, they will, but simply because many of these students will not be able to afford the university fees.

Without access to higher education how will people who are deaf and other disadvantaged groups be able to compete? How are they expected to get the qualifications that they need to compete for higher paying and secure jobs? It just seems that all that work over decades is going to be laid to waste. All that fighting for access to interpreters and captioning could well come to nothing. And all because we have a Government hell bent of destroying the welfare state. A state that really barely exists in Australia anyway when we compare our expenditure on welfare to other wealthy countries.

But the Minister that really has us all stirred up at the moment is Malcolm Turnbull. Turnbull is the Minister of Communication. He wants to put a stop the mandatory reporting of captioning quotas for free to air TV stations. Mr Turnbull simply is trying to cut the amount of paper work that he has to deal with and clearly does not understand the ramifications of what he is proposing to do.

In legislation introduced to parliament Turnbull is proposing:

  1. Removing compliance reporting for free-to-air television so they no longer have to publically report that they are meeting the captioning regulations.
  2. More complex calculations for determining how much captioning sports channels should provide.
  3. Watering down measurement and regulation of caption quality.[1]

Since July this year free to air television stations have been required to caption every show from 6pm to midnight. Currently they are mandated to report all their captioning outcomes and if they do not meet the amount of captioning set out in the regulations without good reason I believe they are held accountable.

Access to television captioning is something our advocates have fought hard for over many decades. One does not want to go back to the 80s when, as a friend suggested, the only thing captioned was The Bill and rather rude shows on SBS. I am not suggesting that cutting the red tape will send us back to these dark ages but the fact that television stations must comply and demonstrate they have met quotas ensures that they at least must come close to meeting the quotas that are mandated.

It is worrying indeed that government wants to water down the legislation, particularly in regard to quality. What is more worrying is, as Brett Casey suggested on ABC radio, that the government wants captions monitored through a complaints based mechanism rather than rigid compliance. What this means is that if we, the consumer, notice that TV stations are not meeting quotas the onus will be on us to complain to hold them to account.

We already know that the biggest weakness in the current DDA legislation is that it is complaints based. There is very little rigid compliance and self-reporting. The DDA is nothing unless we complain. Self-reporting and rigid compliance to quotas ensures that TV stations provide what they are required to. As Mr Casey said, In one way, I believe it shows that we’re going backwards. The onus is on the deaf or hard-of-hearing person to make the complaint when something occurs, and in this day and age, with the technology available to record and capture data and be able to provide that data annually to the compliance body, I don’t think it’s a very onerous task to have to do that.”

Yup we are seemingly going backwards. The Deaf sector and the disability sector have fought hard for many years to achieve the access that they have now. Even though we all have achieved much, this current Government and other state Liberal Governments seem to be doing all that they can to rip the façade from under all of the gains that we have achieved. So we must remain diligent and keep up the good fight because as Ghandi once said,”… the true measure of any Society can be found in how it treats its most vulnerable members” Unfortunately for us our current Governments need to be constantly reminded of this.