“Steve, in your words, you think these are ‘sensible’ steps? In whose view is cinema closed captioning devices such as CaptiView sensible? Instead, by playing the odds, you have dealt away my and others chances of one of the great joys of my life, seeing open captions at the cinemas ever again. Crap strategy. Sometimes you do need to go against the grain, take a stand for things that are right. Deafness Forum, if this is any measure of your collective skills at advocacy, then do me and all deaf Australians a favour, shut up shop and go away. Thank you very much for Craptiview!.”

The above was posted by John on Deafness Forums Facebook page. It was a response to postings about dissatisfaction with the introduction of CaptiView. The Deafness Forum CEO, Steve Williamson, had been kind enough to respond to the postings explaining Deafness Forums positions. He certainly did not deserve such a forceful comment but what the comment does show is the boiling frustration from people who are deaf towards the introduction of CaptiView. Or CraptiView as it is dubbed in the post.

The frustration of the deaf consumer is further highlighted in a posting from Peter that follows. “I think the real problem is that the Government, when faced with a group of people who want real change, get their backs up and choose to ignore those people, because they view those people as too militant or too extreme. The reality is that this is a group of people who are getting more and more frustrated and angry with the “game-playing” that goes on and just want to be HEARD. The approach by the government in putting such “extreme” groups in the too hard basket is simply a blackmail tactic to shut people up and give the government the right to ignore such people. It also reeks, AGAIN and AGAIN, of the attitude that people who do not have a disability somehow have a God-given right to decide what services people with disabilities want or need – “Oh look, you don’t have any experience or knowledge or wisdom in this area – we’re the experts and we’ve done this for years, so leave it to us to do the job – so go away and sit down, your ideas aren’t welcome.” I’m sorry but this is the common attitude I see again and again, even inside disability organisations, even with the very staff who have that specific disability. It is not and never will be right, but how do we change it? By not sitting down and shutting up, that’s how!! And if they don’t like it, then tough luck – they created this situation and now they have to put up with the reaction to this farcical situation. If it means marches, protests, lobbying, getting on the front pages of the newspapers to get the right response then so be it!”

 What these two posts highlight is that, increasingly, the consumer is feeling extreme frustration at being ignored. They voice their views in great numbers and then those charged with representing these views basically ignore them. The ‘representatives’ position themselves as ‘know best’ advocates. A gang of five or six, usually claiming a mandate, will make decisions that go completely against the grain of what the consumer is telling them.

It is not just deaf consumers who are experiencing this but also other disability groups as well. For example the Every Australian Counts group, in its wisdom, decided on a public campaign known as ‘DisabiliTeas’. The powers that be, apparently all who don’t have a disability, decided that it would be trendy to host teas known as ‘DisabiliTeas’ around the country to draw attention to the NDIS. The problem is that people with a disability found this idea condescending to the extreme. People with a disability around the country, including many who sit on the NDIS advisory groups, voiced their frustration that these ‘DisabiliTeas’ had been organised without their input. Even after they voiced their frustrations the ‘DisabiliTeas’ went ahead. Suffice to say, out of respect to my colleagues who are disabled and also fabulous advocates, this author will not be attending.

All of this begs the question; have our collective disability advocacy organisations become irrelevant to the real consumer? Time and time again we witness them making decisions and representing a view that goes completely against the grain of what consumers are telling them. They will claim that they have a mandate to make such decisions or they will condescendingly tell us all that we have to be ‘realistic’ and ‘sensible’ in our ambitions. Well what has being ‘realistic’ and ‘sensible’ achieved for us so far? CaptiView? Woohoo, lets all celebrate that one.

Realistically how relevant can our Government funded advocacy organisations be? In reality being funded by the Government means that our disability advocacy organisations have one hand tied behind their back. They are want to rock the applecart lest it will decrease their influence with the decision makers. Indeed they will baulk at upsetting the Government lest it will lead to them being defunded. They will argue that they have to have ‘relations’ with the Government so that they can influence change. This is certainly true but the question that needs to be asked is; has this relationship become so lopsided that these organisations have become mere puppets to represent Government policy?

 How relevant can these organisations be when, in their own words, they are chronically under-funded? They have no money to consult properly. They become organisations that represent the views of seven to ten people on their Boards simply by virtue of the fact that they cannot really afford to get out there and properly listen to their consumers. God knows even when the consumers voice is loud and clear they often choose to ignore it anyway. And why do they ignore it? Well according to them it is because they are ‘realistic’ and ‘sensible’. What does this make the consumers who are voicing their views loudly and clearly? A rabble?

And the Government will claim that they have made decisions based on their consultation with the Peaks. Graeme Innes, Disability Commissioner to the Australian Human Rights Commission, recently claimed that the groundswell of opposition to CaptiView from people who are deaf was the minority. He claimed he knew this because our Peaks had told him that. What rot. What is happening here is that the Government is hiding behind the peaks and letting them collect all the flack.

If I was a cartoonist, with any skill at drawing, I would draw a cartoon. In the cartoon there would be a gaggle of people all hiding behind a shield. This gaggle of people are sweating and desperate. The shield will have on it the logo of one of our Peaks. This shield is stained red with tomatoes that are being thrown by angry consumers with a disability. Behind the shield is a prominent Government representative. Perhaps the representative is Bill Shorten, perhaps it is Senator Jan McLucas or more probably it is Graeme Innes. The representative is sitting behind the shield in a deck chair, in an Hawaiian shirt, board shorts and drinking a cocktail. The dialogue balloon reads, “Don’t blame me, it was the Peaks that told me.”

And to me this is what it feels like. Our peaks have become mere shields for the Government to hide behind. When challenged the Government will simply claim that they consulted with the relevant Peak in making their decision. But what authority do the Peaks have to advise the Government when they are ignoring the consumers voice? To me, absolutely none!

Perhaps the time has come where we need to heed the advice of Peter that was quoted earlier in this article. Peter pointedly asks and answers his own question, “..how do we change it? By not sitting down and shutting up, that’s how!! And if they don’t like it, then tough luck – they created this situation and now they have to put up with the reaction to this farcical situation. If it means marches, protests, lobbying, getting on the front pages of the newspapers to get the right response then so be it!” Perhaps the time has come where we need to let our Peaks know just how irrelevant to our views that they have become. We need to protest, go against the grain and most of all let the public know that the views that are being represented by our Peaks are not ours.

It is perverse that it is the actual consumer who dares speak out that is being labeled as the maverick. But the mavericks are not us, it is the people charged with representing us. Because it is they who are going against the grain of what WE want. We have to accept that the change that we want will not come through our Peaks. It will come through us. As Barack Obama famously said, “Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”  I’ll see you on the streets!