Questions from Catherine

The Rebuttal is not just a Blog where the author mouths off, although there is no doubt that that happens. It is also a widely read and we hope respected Blog. We receive comments and queries from all over the world about articles that we publish. Our readership is not fully known but in the last 12 months there were 220 053 hits on the site.  Some of these hits were spammers but the total for those was 1.7%. It’s safe to say that it is very well read and has at least some influence. Over the life of the Blog it has had more than half a million hits, 1.1% of these being spammers. More interestingly, looking at the hits graph, it is now at its most popular.

Our readers know this and they often ask us for help. Recently it was the South Australian Deaf Community who helped us to draft an article to bring attention to their fears that their spiritual home was about to be closed or sold. There has been contact from more than one CEO in the Deaf sector asking us to highlight certain issues. Some of these requests from the CEOs have been, it is fair to say, not always ethical. Sometimes we also get requests from readers to answer questions for them because approaches to organisations have not been successful.

On Monday Catherine, not her real name, emailed The Rebuttal requesting some information about Deafness Forum Australia and general views about our advocacy sector. According to Catherine’s Email, she had made contact in the sector several times and not received a response. Catherine is looking to research the effectiveness of the advocacy sector. Her questions are very valid and thought provoking. I have answered these questions and my answers are my own views. I don’t expect everyone to agree and I encourage people to challenge and respond to my answers. If you think I am talking GARBAGE say so, but provide an alternative answer if you can.

Catherine’s first question was; Deafness Forum states that began in early 1993, at the instigation of the Federal Government? Are you able to provide me with any background history, how DFA actually came into being?

Now to answer this I am going to rely entirely on my memory. My recall is that it came about from a protest that there was no advocacy group for people who were hearing impaired. This being latter deafened adults and people with a hearing loss who were not part of the Signing Deaf community (The Australian Deaf Community.) The argument was that the Australian Association of the Deaf that was funded for signing and culturally Deaf people did not really represent the needs of people who were hearing impaired.

In its wisdom the Government of the day decided to set up Deafness Forum. My recall was that when this happened it tried to take funding from the Australian Association of the Deaf and make it part of Deafness Forum.  The Australian Association of the Deaf, quite correctly, protested this decision. The argument of the Australian Association of the Deaf was that it was a cultural group representing and protecting the rights of the Australian Deaf community.

The Australian Association of the Deaf wanted to maintain its autonomy. It quite rightly protested, and still does, that the Deafness Forum Board structure could potentially discriminate against the Deaf community. The structure of having representatives from services, parents, ear disorders and the Deaf community with equal voting power meant that there was potential for the Deaf community to be voted down on vital issues.

Indeed in my first time on the Deafness Forum Board this is exactly what happened.  I had great conflict with the Board over the discrimination case that was happening in Queensland. In this case the two sets of parents of deaf children had taken the Queensland Education Department to Court over the lack of provision of Auslan interpreters. Deafness Forum was of the view that they should remain neutral and not get involved. My own view, as a Deaf community representative, was that even though Deafness Forum should not be involved directly in the case they should at least make a statement along the lines that they supported parents of Deaf kids to have the right of CHOICE and that Auslan was a VALID choice. The Board voted myself and one other pro Deaf community representative down and refused to make any statement whatsoever.  It was a very hostile time and this is only part of the story. To tell the whole story would take many pages.

Anyway after a bit of toing and froing back in 1993 the Government agreed to continue to fund the Australian Association of the Deaf to be its own advocate BUT it also mandated that Deafness Forum would represent the Deaf community too. This meant, essentially, that the Government was being advised by two different groups on the needs of the Deaf community. The problem is that these views are often contrary and this leads to regular conflict. It is not for nothing Bill Shorten described the advocacy sector as a rabble when situations like this exist.

Catherine’s second question is very challenging. I will pull no punches in answering it: Is the fact it was instigated by the Government problematic, like does it mean that it’s not really independent? In one article on The Rebuttal you state that Deafness Forum Australia said they were “currently receiving advice from our major funding bodies on plans moving forward” (re: their CEO situation(Orwell knew his stuff article). Is this usual practice for a disability peak body, to have to consult with funding bodies re: a new CEO?

Firstly, let’s be clear, the statement about Deafness Forum receiving advice from its funding body on plans to move forward was a direct quote from the Deafness Forum Chair and not me. He was responding to me about a query that I had made about the supposedly vacant CEO position at Deafness Forum in December 2011.

The response from the Chair would suggest that the Government has more than a little say in how our advocacy organisations are run and this brings into question the level of independence that they have. What Catherine is suggesting is that because our Advocacy groups are funded directly from the Government it means they are not fully independent of the Government and its policies. In an ideal world our Advocacy groups, whether they are Deafness Forum Australia, Deaf Australia or the Australian Federation of Disability Organisations would be free to challenge and protest decisions of the Government of the day. But that would mean biting the hand that feeds them wouldn’t it?

Does this reliance on Government funding mean that our advocacy representatives are reluctant to openly criticise the Government? In my view, yes it does. There is a tendency to try and create change quietly in, “partnership” and, in my view, a general reluctance to rock the boat. Now sometimes this softly, softly approach is the way to go but there are other times when it is not. The current campaign for cinema captioning is one of them.

This is an interesting campaign, firstly because originally the community, hearing impaired and deaf, rose as one to campaign for better cinema access. They opposed the cinema’s application for exemption to DDA complaints and the minimal improvement in access that was being offered. The community, collectively, said the offer from the cinemas was a joke BUT our Advocates said we were all wrong. They encouraged us to accept what was offered. Our representatives publicly accepted what was on offer despite the fact that what the people they represented wanted was clearly the opposite.

The community won that battle leaving egg on the faces of our advocates. Bill Shorten was our champion and brokered a deal for the introduction of Captiview. The Government went to great lengths to use this case as an example of its commitment to improving access for people with a disability.

As things developed it became clear that the Community did not like Captiview and wanted the roll-out of Captiview stopped so that other options could be explored, including retaining open captions. Again our advocates went against the grain, even going as far as publicly supporting the roll-out of Captiview against such obviously strong community opposition. Why? I am not sure, perhaps it is because they fear upsetting FACHASIA, the funding body that runs the Cinema Access roll out and also provides funding to our advocacy organisation. Or perhaps it is just sheer pigheadedness. I would suggest it might be a bit of both.

But in my time in the sector, and this is going on quarter of a century; I have never seen one of our peaks openly challenge the Government of the day. The strategy has always seemed to be to try and create change quietly behind closed doors and with as minimal controversy as possible. More often it is done in great secrecy and with little transparency. Some of this is because diplomacy can often be the best way forward BUT I also have no doubt that our advocacy representatives DO fear upsetting the hand that feeds them, publicly anyway.

My view is that they are not independent and they are directed and largely controlled by the Government.  Indeed this funding is the only funding that they have apart from membership dollars which form only a small part of their budget.  Because of this reliance on the Government I am not sure whether they actually have a choice. To stay alive they have to keep the Government happy, to make change they have to keep the Government happy. If they don’t what is the option? It is a really difficult situation for them to be in. But I do feel that the balance in trying to represent consumer views and trying to appease the Government favours the Government too much.

The other unfortunate side of this is that there are some people who get involved in advocacy organisations who clearly have a conflict of interest. They have business associations with the Government and use their role with our advocacy organisations to access Government contacts. There are those that say this is simply a situation where both the advocacy organisation and the individual’s business interest have a mutually beneficial outcome. BUT what it also means is that it makes the organisation even less likely to challenge for fear of upsetting the Government.

Ideally advocacy would be fully independent. This is certainly not happening at the moment.

In regard to the question as to whether or deafness advocacy organisations need to consult the Government about who they appoint as the CEO well in my time, as far as I know, this has never had to happen. Although Deafness Forum has stated publicly that the last CEO and the current one were appointed on the strengths of their relationships and networks with the Government in Canberra. So perhaps the Government has some kind of indirect influence in these CEO appointments.

Catherine certainly makes me think and this question is no different. I’ve been asking myself the
same questions you have mentioned in “The Rebuttal” – just how representative of us are they (deaf sector organisations). Is it possible for Deafness Forum to be challenged by another organisation – for example if another organisation sets itself up as a national peak body for the deaf and follows the example of Deaf Australia by being run by consumers?

Simple answer to this is yes and it has happened. Let’s not kid ourselves, the Deaf sector does not see eye to eye. The relationship between Deafness Forum and Deaf Australia  is hostile, although there are signs that it is improving. At its worst in 2010 Deafness Forum and Deaf Australia actually had to try and resolve their differences with the use of a mediator that was paid for by the Government.

While a little different to our advocacy organisations, the situation in South Australia is a good example. The main services group that provides support to the Deaf Community, Deaf Can Do, is the guardian of the Deaf community’s assets and also advises the state government on many issues. For some time now many members of the Deaf community in South Australia have not liked what Deaf Can Do are doing and have had great fears for its spiritual home at 262 South Terrace. They established the Concerned Deaf Group to challenge and ensure that the Deaf community view is heard. They are fully voluntary but they are also fully independent and lobby to both Deaf Can Do and the SA Government about their concerns. While they are only small they have a lot of input. Unfortunately like many breakaway groups they are often patronised and ignored by the powers that be. There are signs that this is changing and that they are starting to make people sit up and take notice.

Federally there is the Action On Cinema Access Group (AOCA) that was established because a concerned group of Deaf and hearing impaired people did not like the approach that Deafness Forum and Deaf Australia were taking in regard to cinema access. So powerful did they become that when I was on the Board at Deafness Forum I recall taking part in a meeting with the Australian Human Rights Commission about the cinema access campaign. The Australian Human Rights commission representative advised Deafness Forum that they should take note and listen to “the new kids on the block”  AOCA also have a representative on the national advisory group that is overseeing the roll-out of Captiview.

AOCA are not funded by or supported by the Government and are fully independent. They are vocal in their opposition to Captiview. They are seen as divisive because they represent the views as they see them and as the COMMUNITY tell them, warts and all. A previous representative for one of our peaks had a bit of a rant to one member of AOCA calling AOCA selfish and divisive. The problem was the person did not realise that this person was a member of AOCA and was very embarrassed when the AOCA representative informed him that she was a member. This gives you some idea of how our peaks view people and groups that, “speak out of school.” They are not aninsignificant group either with upwards 400 members on their Facebook page.

The strength of the Concerned Deaf Group and AOCA is that they are fully independent. They are driven by motivated and passionate people that do not have to fear having their funding being cut off. In many ways it makes them more effective. Ideally or advocacy representatives could be equally independent but as long as the bulk of their funding comes from the Government it is never likely to be so.  Be thankful for the dissenters for without them our voice would be even weaker.

Thank you very much for answering my questions through your excellent article on The Rebuttal. I’m very excited about the information you provided, also very grateful for your valuable time and for the opportunity The Rebuttal provides for open debate, sharing of opinions, discussion and information sharing etc. Also it is an important “voice”! I have found I can relate to what’s on The Rebuttal.

I just wanted to clarify though that when I asked whether its possible for another organisation to challenge Deafness Forum – I used the wrong wording, I kind of meant provide another alternative to Deafness Forum as a peak body for the hearing impaired, for example another alternative for those consumers Deafness Forum claims to represent to Govt that are not happy with the organisation/consultation processes/representation/choice of non-deaf CEO/long term strategic plan etc etc

 The basics of my answer, in retrospect, were a bit vague I admit. What I was trying to say was that yes you can set up another organisation, but keeping it as an independent voice is important. So I gave two examples where independent unfunded bodies have been set up and had an impact. If you wanted to get it funded, that would be problematic but not impossible. You would need to show you have a good following though and set up your group as a viable and legal organisation. You would also need to show that you have support for your views of Deafness Forum’s lack of consultative practices in presenting issues to the Government. If you think you have the support to do it, go for it I say. Then of course once the funding is sourced you have to ensure, somehow, that your new organisation is INDEPENDENT!

 

Thanks Catherine for your questions. I hope others will take an opportunity to comment and refute my answers. As I said, if I have spoken garbage say so but stick to the issues. Open debate like this from questions like those being asked by someone fully independent like Catherine is too often shut down. Good on you Catherine for asking the tough questions and I hope my answers have helped.

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Going Going Gone??

It is with profound regret, that for the first time ever, The Rebuttal has had to remove an article.

The Rebuttal worked closely with several members of the SA Deaf Community to put this article together. We felt the article offered a balanced view of the issues that were at hand in regard the sale of ‘262’. If there were any perceived inaccuracies these pages are available to put alternative arguments or information.

We were careful to point out that we realised it was a difficult decision and that several strategies have been tried in the past with limited success. The only request was that the future of the SA Deaf community be paramount in any decision.

It has come to our attention that some people that helped us put this article together now fear victimization. This is totally unacceptable and we hope that it does not occur.

We invite the management of Deaf Can Do to use these pages to set the record straight. Transparency will go a long way.

We repeat, victimization or fear of it is unacceptable.

We thank the members of the SA Deaf Community who were brave enough and concerned enough to want to speak out. Stand proud!

What We Need!

Carrie is six years old. She is sitting at the dinner table with her family. She looks down at her Brussels sprout with absolute loathing. She isn’t going to eat it unless it’s forced down her throat. She gazes around at her family members who are all in conversation. Mum is in an animated discussion with her sister. Dad is typically silent, fork in mouth, while he watches Sally do her job as principal on Home and Away. Her two brothers, Aden and Finlay, are discussing something loudly and obviously not agreeing. She looks at her brothers and uses the universal sign for “What’s up?” Palms facing upwards, elbows bent and a shrug of the shoulders. Finlay, with over-exaggerated lip movements, replies, “Tell you later,” while clumsily signing, “Tell you over”.

Carrie sighs and toys with the idea of trying to find out what the others are talking about. In the end she decides not to. She knows that the response from other family members will be the same as Finlay’s “tell you later.” She looks back down at her Brussels sprout. It suddenly becomes more appealing.

The above comes from one of The Rebuttal Classics, Carrie. It is one of my favourite pieces of writing. I watched a parent of a deaf child read this story and she broke down in tears. She said that it was the first time ever that anyone had articulated what it must be like for her daughter at home. “Never again”, said the mother, “Will I ever tell my daughter not to worry. For the first time I have understood how frustrating it must be.”

This is the power of story-telling. Story telling is a much underrated tool in advocacy. Our politicians receive mountains of written information every day. Joanne Duhl is from America and is Vice President of TPI, The Philanthropic Initiative. In an article posted  on the blog Deep Social Impact she writes, “As someone who has been in the field of grantmaking – both in government and philanthropy – I’ve had many, many reports “submitted” to me and, truth be told, too many of these have been put directly on the shelf, where they have remained” Says Duhl, “An emerging trend in grantmaking is helping to empower community members to tell their own stories in a way that builds local capacity to strategically use information. “

Effectively what Duhl is saying is that people are beginning to realise the power of personal experience in creating change. The stories of real people, told by people that have experienced the issues are vital. In today’s age of double speak, where people try to use “appropriate” political speak and diplomacy we have forgotten the power of REAL people.

David is deaf. He comes from a single parent home. He grew up in a country town in NSW. For years he felt alone. He was the only deaf person in his school and seemingly his whole community. In fact he did not meet another deaf person until adulthood. David has a PHD and has published works on the social impact of disability. David talks about how his schooling has left him with deep scars.

“ ..On the bus going home from school I would always try to sit by myself. I liked to sit at the very back of the bus so I could see everyone in front of me. If I could not get a seat at the back I found myself anxiously looking around. I feared that someone would be talking to me and I would not know. I would wonder if they were staring at me, talking about me or making fun of me. Obviously being a teenager I felt a strong desire to fit in. My deafness set me apart from my school mates and I hated it. This fear of interaction and unwanted attention was my constant companion.”

Imagine David advocating for deaf kids. Imagine him talking to Governments. Explaining to them the experience of deafness and how it impacted on him. Imagine David telling his story as a way to create change and highlight the need for better counselling and mental health support for deaf kids. David’s stories carry weight. Why? Well because he has been there and done that. Imagine David collecting similar stories and advocating for increased funding and family support for deaf kids in mainstream settings. He would have, what we call, CLOUT! He has the ability to hit a raw nerve and bring the experience of deafness to life.

Andy Goodman is a communication consultant. Some people may recognise Goodman as the writer of the hit TV show The Nanny. Goodman is a key player in philanthropy in America and advises not for profit organisations of strategies to attract funding and support. Says Goodman, The fact remains: if your goal is to educate, persuade, or simply connect in a meaningful way with a particular audience, storytelling is the single most powerful communications tool available to you.”

Goodman is not naïve enough to think that story telling is the end product. He points out that data and numbers are needed. But says Goodman, “if a person hears a good story, it is hard to erase the impact with data.” Stories bring the data alive.

The lived experience is something that our advocates underplay too often. Bill Shorten, whether you like his politics or not, highlights the power of real people and real stories in influencing political debate and decision making. In a speech to the National Disability and Carer Congress, 2nd May 2011, Shorten had this to say;

“..I’d been around the traps. I’d travelled from end to end of our great country – from shearing sheds and steel mills to Beaconsfield – meeting hardworking men and women and listening to their stories. I thought I’d seen it all. But I hadn’t. I thought I knew my country. But I didn’t. My thousand days working with you were more than an education – more than a revelation. They were a privilege. I met a lot of great people and saw a lot of not-so-great things. It was sobering to realise so many of my fellow countrymen and women are literally exiles in Australia, disempowered, shut out of the Australian way of life … and unable to lead an independent life. It was a privilege to be among you when you started to unite into a disability movement determined to campaign to finally make civil rights accessible to all. And, let me tell you, I haven’t forgotten what you told me. I haven’t forgotten your stories.”

You can be a cynic if you want to. You can claim Shorten is all about Shorten. But there is one undeniable fact. It was the stories of real people that moved Shorten. It was these stories that led to the movement that created the National Disability Insurance Scheme movement. It was real people and real stories.

Advocacy is about creating change. To create change you have to know your stuff. That is why it is so important that our Deafness Sector organisations utilise the skills and experience of deaf people. Too often they fall into the trap of looking at a person’s PIECE OF PAPER and forget about the UNIVERSITY OF LIFE. Too often they employ people, imminently qualified academically, but with no background in deafness. It is as if experience in deafness is an afterthought. Often these ACADEMICS are simply playing catch up with deafness issues and left floundering. Often they are just using their role as a stepping stone to their next job. They often lack passion, desire and an understanding of the LIVED EXPERIENCE. As a consequence they often lack credibility when representing the deafness sector.

The lived experience is all too often underplayed. Who do you want representing you? A person with no background in deafness with six University degrees or a person with just one qualification, a life living as a deaf person, a history of tackling barriers head on AND A TRACK RECORD OF CREATING CHANGE.

Well unfortunately in our deafness sector they will go for the six degrees nearly every time. They will forever underestimate the value of the LIVED experience because someone is “imminently” qualified. What I do not understand is why organisations like Deafness Forum and most of our Deaf Societies cannot and do not TARGET deaf people for senior representative positions.

I know three deaf people who are unemployed at the moment, all who have been actively involved in deaf advocacy. One has a PHD that focused ON DEAFNESS. One is a lawyer with human rights background. The other is a person with an MBA. THREE vastly qualified people with not only ACADEMIC experience but also the LIFE EXPERIENCE that is so valuable. Why have these people not been targeted for key roles in the deafness sector? Surely these people have something to contribute. Or are they supposed to just volunteer their expertise?

Deaf sector organisations seek my advice all the time on anything from Aboriginal issues, to the NDIS or captioning. But will they pay me for it? NO! I do it from the goodness of my heart, apparently. The point is that there is a vast pool of talent out there, all deaf and none targeted or utilised by the deaf sector unless it is on a voluntary basis. Something is very wrong.

As Bill Shorten said REAL STORIES and REAL EXPERIENCES are what moved him in his policy direction. The deafness sector needs DEAF people with the lived experience leading them. Out there are wonderfully talented, experienced and qualified DEAF people but the deaf sector does not want or seek them.

It makes no sense to me.

Some Thoughts on Political Correctness

Political Correctness (PC) has a number of definitions under the FreeDictionary.  For example the dictionary defines political correctness as;  “…relating to, or supporting broad social, political, and educational change, especially to redress historical injustices in matters such as race, class, gender, and sexual orientation.” (We will forgive them for leaving out disability) By such a definition I am politically correct to the extreme. It also defines PC as. “… Being or perceived as being over-concerned with such change, often to the exclusion of other matters.” I am not sure that you can really be over-concerned but again, there you have it, I am PC – Absolutely.

BUT scroll down and you will see further definition of PC as; “..avoidance of expressions or actions that can be perceived to exclude or marginalize or insult people who are socially disadvantaged or discriminated against” By this measure I am very unPC. I have a very dry and often black sense of humour. I laugh at a variety of jokes whether they are about gender, disability, sex or death. Often my humour can be very offensive.  Socially, in my aspirations to improve the lot of people with a disability, I am a champion of PC.  Ethically by my use of jokes about sensitive topics I often am very unPC.  Of late I have read a couple of articles by social commentators that have made me question my moral compass in regards to PC.

Shirley Stott Despoja, writing in the Adelaide Review, has written a thought provoking piece, You gotta laugh. Oh no you don’t. Stott Despoja highlights that we often laugh about things that we fear. We fear death, so to make light of it we make jokes about it. We fear losing our hearing so the deaf become figures of fun and so on. ( http://www.adelaidereview.com.au/article/1275 )

Stott Despoja is at loss as to why people laugh at demeaning jokes. She provides an example of dementia jokes that are being circulated among her older peers. Stott Despoja’s stance on this issue is so strong that she even refuses to air the joke publicly again.

She decries the fact that her peers belittle themselves with such jokes. For Despoja this is the ultimate human indignity.  She points out that, “The follies of youth or the insecurities of middle age are hardly ever the subject of such vicious, demeaning and dismissive jokes” This is debatable but the question remains, why do we demean ourselves and others so?  How do people who are experiencing the horror of dementia feel about these jokes?  How do jokes about dementia make the families of dementia sufferers feel? What of those who have early onset dementia? Do they just laugh … “Oh that will be me later, hohohoho.” It would be mortifying for families and sufferers to read or hear such jokes. Regardless so many of us still laugh and make such jokes. Something is not quite right.

Last week I read a piece by the incomparable Stella Young who let fly at journalist Joe Hilldebrand who sent a message via Twitter that read, “I just want to say I think it’s great that Sydney Airport is providing so many jobs for the mentally handicapped” Mr Hilldebrand was not being complimentary. He was frustrated at the effectiveness of the Sydney Airport staff and so saw fit to describe them as being mentally handicapped. Ms Young believes Mr Hilldebrand’s Tweet was offensive because it suggests that people with intellectual disabilities are “Crap”. ( http://www.abc.net.au/news/2012-02-08/young-disability-is-not-a-cute-little-joke/3817824 )

Ms Young suggests that disability is seen on two platforms, the real and the unreal. The real is where people have a lived experience of disability. They know someone with a disability and as a consequence take disability seriously and treat them with respect. The unreal is where people see disability as some sort of fictional fantasy realism. They make cheap shots and jokes about disability. Mr Hilldebrand suggesting that people with intellectual disabilities in the workplace are incompetent is an example of this . Says Young, “…people living with disabilities deserve to be respected because that’s what a benevolent society does – it treats everyone with respect.” Hilldebrand apparently has 15 000 followers on Twitter. His influence is great. But whether you have 15 000 followers or two, suggesting that people with intellectual disabilities are “crap” at work or anywhere is disrespectful and unwarranted.

And people with intellectual disabilities do get it. I vividly recall working with a group of young intellectually disabled people as part of a national job placement program. They would often tell me stories about how they were teased at school or how people would make cutting remarks about them in public places. It had and has an enormous impact on their self esteem

It is worse because many people with intellectual disabilities lack the capacity to fight back. Unlike someone like myself for or Ms Young, for example, who can make a witty come back or write a scathing piece and print it on a national website to defend ourselves. People with intellectual disabilities, and indeed any disability, are often figures of fun and bullied at school. For this to continue into adulthood must be excruciating.

Stella Young herself is an interesting study in PC.  Ms Young seemingly pokes fun at herself as a way of bringing attention to disability issues.  In reality she pokes fun at societies attitudes towards disability. In an article available at Watch Out For Ms Young describes herself as a, ” bona fide cripple, in da wheelchair”  In another interview in The Age, Lunch with Stella Young, Ms Young explains her use of the term cripple. Says Ms Young, “I call myself a crip and people get a bit up-in-arms about it,” She explains that she finds that using the term Crip is empowering not unlike the use of the word queer by many gay people. BUT says Ms Young, “I would never presume to call another person who was disabled that I just met a crip.”

This is probably because not everyone is in a good place about their disability. In a world that tries to NORMALISE everyone many feel that disability is something one must hide. Perhaps for Young being able to use the term Crip about herself demonstrates that she has no hang ups with her disability.  In not presuming to call another person a Crip Ms Young acknowledges it is not the same for every person with a disability and that one must exercise a degree of sensitivity.  This is what being PC is all about.

I am pretty much on the same plane as Ms Young. I delight in being called a Crip by my close friends even though I am deaf. I might moan and groan about lack of captions on the television and Paul, my able bodied friend who has been in the disability sector for 133 years, will say, “You poor cripple.” I accept this as the ultimate sign of acceptance. But Paul would never say that to just anyone. To know when and where you can be PC while being totally unPC  is about having the ‘REAL’ experience of disability. But the ‘REAL’ experience is personal and one should never presume that everyone’s experience is the same. This is why Stott Despoja finds public jokes about disability so offensive, particularly the demeaning ones such as the one used by Hilldebrand. They are not just offensive but they are also dangerous in that they often promote stereotypes of disability as ‘USELESS’.

I still struggle with PC. Stella Young is a prime example. Ms Young is a person with a disability. She is a person who uses a wheelchair. She is a person of short stature, or is she a person with an acquired form of dwarfism? (She actually has a kind of bone condition.)  Or is she just a person? Or is Ms Young a woman with a disability who is a wheel chair user and of short stature? I, who have been in the disability sector for over 20 years, still struggle to come up with the right language to use. In fact I have long since given up trying.

And this is one of my pet hates about PC. You see PC is something that many people hide behind because they cannot accept people with disabilities just as they are. For many on the PC bandwagon being PC is a tool to deny the existence of disability.  We once had the term handicapped. This became negative so they came up with the term disability. Disability referred to the physical condition that you have while the handicaps were the barriers that your disability caused you. Then of course we had deaf, which became hard of hearing, which changed to hearing impaired. But then people took offense to the impaired part and wanted to change it back to hard of hearing. Now we can have people of varying abilities, the differently abled or the access challenged. Men are alternate sex 1 while females are alternate sex 2 (I made that one up) But, my point is it gets ridiculous. For me the ultimate unPC is to try and find a label for a group of people that denies they exist and attempts to NORMALISE them.

But the ultimate-ultimate unPC is for those that represent you to deny you your voice. This is the new age fad. This where a group of five or six people that hide behind the placard of ELECTED representatives decide that we are all wrong and present the exact opposite of what we tell them we want to the Government. To them we are all just faceless people in the crowd making senseless and uninformed noise. To me that’s just as offensive as the Hilldebrand Tweets.

For now think twice about that disability joke you are about to distribute via email of Facebook. The Real experience of many may not match your own and offense is often taken. Worse, like with the Hildebrand Tweet, it can promote negative stereotypes. It is these stereotypes that we people with disabilities are all trying to overcome. Let’s not make it any harder than it already is.

Representation – What it really means.

Larry M Bartels in a paper about political representation, Economic Inequality and Political Representation, 2005, makes some interesting statements about political representation. Bartels explains that, “a key characteristic of a democracy is the continued responsiveness of the government to the preferences of its citizens, considered as political equals.” He then goes on to note that, But there are a variety of good reasons to believe that citizens are not considered as political equals by policy-makers in real political systems” In essence what Bartels is saying is that our political representatives do not represent the people that voted for them, nor do they see the voters as fundamental to their decision making.

Bartel goes on to point out some of the reasons why representation is not equal. Wealth for example is one factor. The wealthy are likely to have more contacts and more influence. If People who are educated, and thus able to articulate their needs, they are more likely to try and influence decision making processes as well. Those without wealth or without education are likely to have less influence and less ability to be able to express their needs to politicians. This means representation is not as equal as our politicians would have us believe.

The Government, in an effort to provide society with wider representation, often provides funding for marginal groups. These groups might be for Aboriginals, people from Non English Speaking Backgrounds and even ex-prisoners. In the Deaf area we have groups like Deaf Australia, Deafness Forum, Better Hearing, various Deaf Societies (Collectively the Australian Federation of Deaf Societies.) and Deaf Children Australia. Funding is given to these groups to represent the needs of the Deaf to the Government and some of them provide direct support to the deaf as well.

These groups are active. They develop submissions and submit them to the Government so the Government will consider the needs of the deaf for a variety of policy platforms. For example these organisations have submitted responses to the Government about where they see the deaf fitting in with the National Disability Insurance Scheme. Last year they responded to a variety of issues including the review of the DDA Education Standards and more recently the television stations application for exemption to DDA Complaints and further increases in captioning. They are responsive and active, which is a good thing. BUT!

But just how representative of us are they. Returning to Bartels paper let’s try and relate it to the deaf population. Deaf people fall within disability funding. It is well known that the disabled have high rates of unemployment and are generally not in high paying jobs. Consequently, following Bartels principals, this is a barrier on their ability to influence. Born Deaf people can have a number of challenges to achieve good education standards. Many can have literacy issues which impedes on their ability to obtain high education qualifications. Again this is a barrier to their influence. Parents who have deaf kids come from a variety of backgrounds, some wealthy, some not and some in the middle. Parents, especially of new born babies who are deaf, know very little about deafness and this lack of knowledge will impede on their ability to influence also. Who is one of the most influential parents of deaf children? None other than Dr Bruce Sheppard, former President of the Australian Medical Association and strong supporter of Dimity Dornan and the Hear and Say Centres. Rich, educated and of course INFLUENTAL!

Supposedly our deaf sector organisations are representative of the needs of DEAF people and PARENTS of deaf kids. But just how well are they really represented? Let’s look at Can Do For Kids Board in South Australia, a key organisation providing support to deaf kids in South Australia. On their Board, in 2008, they had 11 people. It’s an impressive Board of qualified people. The Board, in 2008, had a Professor of education, a lawyer from a major law firm, a Doctor of otolaryngology, an ophthalmic surgeon, another lawyer and CEO of another major law firm, an optometrist, another lawyer and the remaining people were all accountants. Admittedly one of the lawyers has a long association with deaf people … But clearly to get on and influence this Board you need stonking great qualifications and a fair bit of money. My question is – Where is the consumer and parental representation? One must remember that Townsend House, who auspice Can Do For Kids, also manage the SA Deaf Society, known as Deaf Can Do. Sure the Deaf community are listened to but how much control and influence do they really have on a Board that clearly has a medical and business focus? What real community influence is there?

Not all Boards are made up like the Can Do For Kids Board. Some are made up of a mix of consumers, parents and service providers. Deaf Australia is one of the few Boards around that is probably made up fully of consumers. Other organisations are a mixture of consumers, parents and service providers. But outside of the elected people on these Boards, just how much influence does the average consumer have on these organisations?

Last year, for example, Deafness Forum put out a response to the review of the DDA Education Standards. This was one of the more important reviews that occurred last year. They sent this document to members asking for feedback. The problem was that members only had three days to respond. There were other submissions including submissions to the Productivity Commission about the NDIS. What real input did consumers have to these documents? Of course these documents that form the submissions are aimed at influencing the Government’s policies but are they representative of deaf people or just those on the Board. A few – like myself – who are educated and able to understand the issues put forward will often find time to respond. Usually we get a thank you for our efforts but have no idea as to whether our feedback was used. Of course the papers they ask us to respond to are all written in academic speak aimed at influencing Governments. If you lack the education to understand these submission papers, then what do you do? Certainly in three days there is no way you can get help to have these documents translated. If you want to express your view in Auslan, what avenues are there to allow you to do so?

It is not easy for organisations to consult properly. They lack funding and resources to do this. Often their only recourse is to send what they produce to consumers and hope that they respond. The ones educated and experienced enough will respond. But the average Joe and Jane Blow will not and often cannot. The reality is that it is usually the people on the Board that have the influence and no one else. Our representative organisations, hand on heart, will claim that they have consulted widely. But is a three day deadline to respond really consulting? Clearly it isn’t.

Then of course there are times when consumers actually respond en-masse. Who can forget the Cinema Captioning Campaign. Nearly five hundred people submitted to the Australian Human Rights Commission saying throw out the Cinema’s application for exemption. The responses were there for all to see. What happened? Our major advocacy organisations, as one, ignored all the people that asked for the Cinema application to be thrown out and sent submissions to the AHRC saying that the Cinema application should be accepted. Just who were they representing – the public who fund them through their taxes? Or the people that sit on the Board? Are they really, truly representative of our views?

However, there are signs of improvement but still our representatives will go against clear messages that are being sent to them by deaf people. The recent exemption application by TV channels to increasing captioning is a prime example. There were 53 submissions from individuals and organisations responding to the TV stations application.. Nearly all the submissions were from individuals. ALL OF THE INDIVIDUALS said NO more exemptions. Yet Media Access Australia, who in 2009 actually congratulated and then endorsed the Big 4 Cinemas on their application to be exempt from DDA complaints, ignored the views of the very people they are supposed to represent. The Media Access Australia submission to the TV application to be exempt from further captioning increases is tedious to read. It went here, it went there and it went everywhere. Eventually it reached the conclusion that if the exemption application was not granted that captioning levels might actually fall. Even I, an educated person, could make no sense of their arguments. Yet again MAA showed that they have little regard for the people they claim to represent.

Deaf Australia, on the other hand, got it right. They clearly listened to their community. Their submission, in part read,

Deaf Australia is aware that the Deaf community, whom Deaf Australia represents, has become increasingly:

  •  exasperated with the slow increase in captioning content;
  • unhappy with the poor quality of some captioning, especially live captioning; and
  • resentful of the constant requests for exemptions from complaint and the denial of their right to complain, particularly about poor quality captioning.

In their application, the broadcasters have made the point that when the BSA is amended TV stations that comply with the BSA will be exempt from complaints under the Disability Discrimination ACT. However, it should be noted that they will not be exempt from complaints to ACMA under the BSA if they breach the BSA requirements. For consumers this is particularly important for captioning quality.

Deaf Australia’s view therefore is that while they have for some time served a useful purpose, the time for temporary exemptions from TV captioning complaints is over.  Government has made it clear what is required of the broadcasters, and broadcasters will not be exempt from complaints to ACMA when the BSA is amended. There is no purpose in further temporary exemptions under the DDA.

Deaf Australia therefore does not support the free to air TV stations application for a further temporary exemption.  

 And that is what representation is all about!

 

To read the responses to the TV stations application to exemption go to:

 http://www.hreoc.gov.au/disability_rights/exemptions/tvcap/2011/subs.html

 

Speak Up, or Remain in Silence!

Last week Stella Young wrote a scathing article directed at leader of the opposition, Tony Abbott. Mr Abbott has publicly stated that he would put any further investment in disability support through the proposed National Disability Insurance Scheme on the back burner until Australia was back in economic surplus. Ms Young quite rightly took offence and pointed out a few home truths to Mr Abbott, ” A stranger will come to your house and shower you. Not daily, of course, because many people who require that kind of personal support are only entitled to two showers a week under the current system. For the other days you’ll feel grotty and reluctant to leave the house, ” Ms Young pointed out Australia’s shame, that they rank last of all OECD countries in the provision of disability support.

Apart from the obvious issue of human dignity, not investing in people with a disability properly means that they cannot contribute to society. They can’t work, they can’t get about, they can’t attend the cinema, they can’t buy things because they can’t earn a good income through employment. They are a wasted resource. This is an estimated 20% of Australia’s population.  Sure not all have disabilities that require significant investment but many millions do. In short to tap into this human talent and reap the economic benefits requires a significant investment.

And this is where the National Disability Insurance Scheme comes in (NDIS). The concept of the NDIS is simple. The idea is that Australian’s, similar to Medicare, contribute a percentage of their income to pay for disability support. This might be .05% of a person’s salary every week which is then channelled back into the NDIS to provide the funds for disability support. It is estimated that upwards $6 billion a year is required to support people with a disability to access society. Currently the Government does not even provide half of that.

The current Government has asked for 7 years to roll-out the NDIS properly. Many say this is too long. The opposition do not even want to consider the NDIS until Australia is in surplus again. Sceptics point out that for the most part, when the opposition was in power, Australia was in surplus but they still did not invest in disability properly. So why should Mr Abbott be trusted now.

The bottom line is Australia needs to increase investment in disability drastically to un-tap the full potential of people with a disability. The NDIS is crucial. For deaf people the NDIS could, potentially, bring untold benefits. The problem is that the deaf sector has been very quiet in the debate. So quiet that they run the risk of missing out on the benefits of the NDIS altogether. Debate on the NDIS has been very much dominated by the issue of care support. By this I mean home support and respite for people with severe physical and intellectual disabilities. Don’t get me wrong,  care is a very underfunded area and needs all the attention it can get. BUT the NDIS needs to be about more than just care and respite. The Deaf sector needs to be more actively involved in the development of the NDIS or run the risk of missing out.

To understand just how the NDIS can benefit deaf people one needs understand that the NDIS funding , if all goes to plan, will be very much self-directed funding. What this means is that the person with a disability will receive the funding and, within certain guidelines, will decide how that funding is to be used.

What will basically happen is that the NDIS will be set up as an agency. Eligible people would apply to the NDIS for funding. Most likely they will have a choice. They can opt to have a person assist them to organise the supports that they need OR they can opt to receive a lump payment every year and direct that funding to buy the services that they require. Of course they would need to demonstrate, probably by way of invoices, that this money had been used appropriately to purchase the right types of support and show that they are not abusing the system.

Let’s pretend the NDIS has been set up brilliantly and provides for everyone with a disability including the deaf. Peter Deafapple  goes to the NDIS agency and outlines his needs.  He has social needs every year for things like attending parties, weddings, funerals etc. He wants to do some extra study and needs live captioning for that. He has a cochlear implant that costs money to maintain. He needs technology like smoke alarms in his new home. Of course this pretend NDIS is flawless. Peter has an assessment and it is estimated that his needs for the year are $75 000. He gets that amount of money which he must use to meet his needs as identified. Some of that goes to an accountant to look after the money, spend as needed and provide the necessary evidence to the NDIS agency.

Peter uses his funding as needed. He attends a wedding and books an interpreter. The interpreter agency invoices Peter’s accountant, who pays the bill and forwards necessary paper work to NDIS on Peter’ behalf. Through the year Peter’s Cochlear processor dies and it needs replacing. Peter has it replaced immediately using funds he has received through the NDIS. He organises his captioning at University without the need of having to apply for it through the University disability support. He is in complete control and directing his funding as he sees fit.

Not only that, Peter has POWER. He does not have to beg and plead with his local Deaf society to get access to funds to attend his dearly departed grandmother’s funeral. He calls and organises it himself. Agencies that provide services must develop services to meet what PETER and other deaf people want at competitive prices.  They do Peter’s bidding rather than the other way around. If the service is not up to scratch Peter simply goes somewhere else that provides better value for money. No applying for vouchers, no hoping that there are enough funds to provide the service that he needs, no being patronised and made to feel grateful. Peter is THE MAN.

Imagine you are a parent. You want the best Auslan tuition or speech therapy that you can get for your child. If you want to ensure your child gets the best access to language development that is possible there will be no need to worry whether the Education Department can spare an overworked speech therapist once a month. There will be no being at the mercy of some service that decides that Auslan tuition is too expensive and provides it only as they see fit. The parent has the power to direct their money as needed. The services either meet the needs of the parents or go out of business.

These are examples of what is possible if the NDIS is developed properly and considers the unique needs of all people with a disability. This is the dream. For now it remains a dream, especially for deaf people. The deaf sector has not yet fully grasped the potential of the NDIS. It has been largely silent and needs to speak up. It must become more actively involved in the NDIS debate.

As things stand the NDIS debate has been largely driven by carers. This is understandable in many ways. There are carers in retirement who are still looking after their adult children with a disability. Funding for respite care is minimal and is nowhere near enough to meet demand. People with physical disabilities, as Stella Young pointed out, are at the mercy of an underfunded system and cannot have their basic hygiene needs met. There are young people with a disability being cared for in nursing homes for the aged because they system simply cannot meet their needs. It is shocking.

While these needs are extreme it does not mean that the deaf have to miss out. To tap into the benefits of the NDIS the Deaf sector has to become more actively involved in the NDIS debate. Recommendations have been made, for example, that education and employment needs not be part of the NDIS. For working age people who are deaf this is arguably the biggest area of need. While there are some great programs in employment, these programs do not come close to meeting the real need. Potentially the NDIS can help fill this gap. This is part of the reason why the deaf sector needs to find its voice in the NDIS debate and fast.

Deafness Forum has made several statements about the positiveness of the NDIS. Most recently, in August 2011, they spoke of the need for Communication access because, “Communication access is life” President David Brady spoke about the impact the NDIS could have on the purchase of digital hearing aids.  There were noises about the need to provide access to WORK, but the initial recommendations of the NDIS by the Productivity Commission is that employment not be included as part of the NDIS.

While these are positive statements by Deafness Forum it is not enough. We in the Deaf Sector need to be thinking about the best way the NDIS can meet our needs. Pacifying statements of intent and support to the Government, while useful, are not enough. To benefit from the NDIS the Deaf community needs to find its voice in the NDIS debate NOW or we may all end up remaining in silence.

Orwell Knew His Stuff!

William Lutz, Professor at Rutgers University perceptively comments,  “If there’s one product American business can produce in large amounts, it’s doublespeak. Doublespeak is language that only pretends to say something; it’s language that hides, evades or misleads.” Double speak is the art of saying one thing but meaning another. In today’s age double speak is rife. We have, unfortunately, almost reached a point where plain speaking truth is seen as wrong, rather than the norm.”

You can no longer approach any organisation with a simple question and get a straight answer. You might, for example, ask something as straight forward as, “How much did you spend on services last year?” The answer you will get will be either, “I am unable to divulge this information as it is commercial and in confidence.” Or you will get, “ We are committed to increasing our expenditure on services, we are committed to targeting a percentage of revenue towards services.” Answers such as these are designed, of course, to tell you nothing or simply to hide the plain truth

Recently after Deafness Forum found themselves short of a CEO I made enquiries about what was happening to fill the position and even offered to assist them knowing that they were under the pump with the Deafness Summit coming up in April. I got a standard reply that, ” The board and I are exploring options and are currently receiving advice from our major funding bodies on plans moving forward.  This will take a month or so as you do understand being an ex-board member that we are all volunteers.”  Within a month the position of CEO had been filled, without advertising. Clearly the Board had been active in seeking someone well before I had even contacted them. This is fine, but why not just say,  “ We are acting quickly to fill the position and are negotiating with a suitable candidate to fill the position in the short term. We will not be advertising because the position needs to be filled quickly owing to heavy commitments of Deafness Forum in the next few months”

Ok, sure I would have loved the job but what bugs me is the lack of transparency. Sure I would have targeted Deaf and hearing impaired people for the job. Sure I don’t agree with how they did things, but is their right to do what they think is best for Deafness Forum as an elected Board. I would much prefer them to say, “Well Gary we don’t think you are a suitable fit for the job, you are too out spoken and critical. We want someone less political and controversial.” Sure I would have been angry at this but I would have respected them for their honesty. Of course they would never say that. They would say something like, ”Thank you for your interest. You are clearly very experienced and skilled. We will give your application all due consideration.” Then of course they would put it in the drawer and forget about it hoping that would be the last they would hear of me.

Now everything I have written above is purely speculation. It’s quite possible nothing like this happened at all. It is quite possible that when I originally contacted them that they were seeking advice from their funder. It is possible that within two weeks that they had received that advice from their funder, did a head hunt, found someone suitable, contacted them, contracted them and set a start date. Anything is possible.  After all they are all volunteers right?

And of course me writing this could all be construed as sour grapes, couldn’t it? OK I will admit,  in the pursuit of honesty and openness,  I am mightily miffed that I can’t get due consideration for the job. But it’s not really sour grapes, it’s more sheer frustration that people can no longer be up-front and honest. I know the chair of Deafness Forum, he is a top bloke. I had a beer and debate with him at the recent Australian Deaf Games. I write this because I know he will take it in the spirit that it is meant. All I am seeking is some honesty and transparency of process. This very simple and worthwhile concept, OPENESS, is eating at the very soul of our sector and it saddens me.

Truth and its purpose have been debated for many years. Ancient Greek philosopher, Plato, asked ..“And isn’t it a bad thing to be deceived about the truth, and a good thing to know what the truth is? For I assume that by knowing the truth you mean knowing things as they really are.”  This train of thought holds true today. Best-selling author, Spencer Johnson, stated, “Integrity is telling yourself the truth, honesty is telling others the truth.” Ethically we know that telling the truth, being open and transparent is the right way to go about things, yet still we chose strategies like double speak or hiding behind imagined legal barriers to hide the truth. We all have become so self interested that we have forgotten the big picture.

We have reached a point where we can no longer say something that is the absolute truth. It is seen as the ultimate no-no to say something like, Captiview is a DUD. (I actually prefer my friend John’s label – CRAPTIVIEW.) We have to water things down. We have to portray a false sense of positiveness for fear that our decision makers will take their ball and go home. Rather than say Captiview is rubbish, and it is, we have to resort to double speak and say something like, ”Captiview is an innovative technology that has brought better access to the cinema. There are some challenges in its use ….”   When the community expresses its view with passion, immediately there are people who try to cover it up and portray a false sense of positiveness. WE MUST NOT BE NEGATIVE.  We have to PLAY the GAME!

What happened to the days when you could let people know what you really felt.  Years ago we were encouraged to protest. Hell we had a mass campaign where we rang people on the TTY all day and blasted them with a TTY beep so that they could understand the need for a National Relay Service. We protested outside an Oral school because some guy was giving out misleading information about the effectiveness of hearing aids and how sign language impeded speech development. We protested outside the Surf Life Saving Club at their refusal to allow a deaf girl to try for her bronze medal on the grounds she could not use a walkie talkie. WE showed good old fashioned passion and feelings.  Today we would be hushed up for fear of upsetting FRIENDS of INFLUENCE. God forbid if we talk out of school, we may even lose OUR FUNDING! There is no such thing as an impartial organisation anymore.

Now we must have friends. We must put up photos on our websites showing us smiling with all the influential people we know. We have to be seen smiling with the PM and the Opposition all at once, just in case the other becomes PM and we need their influence to retain our funding. Ok it helps that we have friends on the inside but not to the point where we fear telling the truth lest we put them offside. It is sad but we have reached a point where WE FEAR THE TRUTH.

George Orwell in his classic book, Animal Farm, highlights just how the disability sector work today in this brilliant passage, “..No one believes more firmly than Comrade Napoleon that all animals are equal. He would be only too happy to let you make your decisions for yourselves. But sometimes you might make the wrong decisions, comrades, and then where should we be?”  And because we are all seen as ignorant, we are fed half-truths, double speak and worse even patronised. A band of a few decide that they know what is best for all of us. They tell us only what they THINK WE NEED TO KNOW.

Just tell us the truth, be open and transparent. If you have done nothing wrong there is nothing to hide. People may not agree with the decisions of others but they will respect these decisions more if integrity of process is displayed. As Mark Twain said, “Of all the animals, man is the only one that lies.”  Twain also said, “..A half-truth is the most cowardly of lies”  It is within us to change this mentality of double speak, lies and thought control. Who among us is brave enough to start?

PS – I am well aware that this piece will do me no favours professionally, but hell someone has to practice what they preach.