After a while, positive people, sick of being talked about, decided to intervene with an unambiguous message: these are our lives, our bodies, and our choices. So talk to us as if we matter. We are the reason you are here. In many ways, this approach has been the enduring hallmark of our response as HIV positive advocates. That it should be we, the people living with HIV and AIDS, who, where possible, represent ourselves, and speak for ourselves to government, in clinical research, or around any other table where significant decisions affecting our lives and health are likely to be taken. (Peter Cannavan, Writing in The Australian Health Consumer.)
And why not? People with HIV have the right to make decisions for themselves about themselves. Says Cannavan, “Talk to us as if we matter.” HIV is a relatively new disease, a 20th century disease so to speak. But in a relatively short space of time people with HIV have cottoned on. Decisions were being made about them and without them. Very quickly they said ENOUGH! They demanded, as Cannavan puts it, CENTRALITY, which simply meant that people with HIV were crucial in deciding what needs to be done about HIV. Cannavan’s view is that this should be top to bottom whether it be about drugs, care, prevention and awareness campaigns. One of the biggest wins that people with HIV had was to have approved the Special Access Scheme which was a program that allowed people with HIV access to drugs that were not yet approved for use in Australia. In short people with HIV had control and input. This is a far cry from disability.
Disability is, by and large, controlled by non disabled people. Our needs are represented largely by charity and welfare based organisations that are headed largely by people without a disability. Recently I have been campaigning about the upcoming Disability Employment Summit. Here we have a key summit that will discuss the future of employment support for people with a disability. No where on the agenda is there a person with a disability or an organisation run by people with a disability contributing to the discussion. Unless one includes Graeme Innes, who is blind, and who is speaking about the impact of employment for people with a disability, the whole program is dominated by academics, Government bureaucrats and people aiming to promote themselves as key Disability Employment Service providers. No where have people with a disability been invited to express how they feel about the Disability Employment Service. No where on the agenda are personal experiences and stories about support provided by the Disability Employment Service, good or bad, given air-time. It’s just a variety of bigwigs patting themselves on the back.
And then, of course, the conference organisers had the gall to tell me they would not provide me with interpreters after at first promising that they would. Here we have a major conference about disability that I am attending as Professional Development for my work and no access is being provided. AND because they would make a loss of $700 my registration. This despite the fact that the conference organisers will make many thousands of dollars in profit from the DISABILITY MARKET. Lets not forget they are also BREAKING the law by refusing my access unless they could cry poor which they clearly could not in this case. Although they did try.
Now I am a person who is fortunate to be able to advocate for myself. Not everyone can. This conference was about ME, I wanted access, I took control! This kind of advocacy is my bread and butter. I know the legislation and through my work in the disability sector I have extensive networks. Now accepted wisdom is that I should enter into a dialogue with the conference organisers and remind them diplomatically of their obligations. What is not accepted is that I should email the conference organisers with a CC to all their keynote speakers, the Disability Commissioner at the Human Rights Commission, major Government departments, Universities that use the company to organise conferences and key disability advocates around Australia. This is what I would call being a Dirty Advocate, Bad to the Bone so to speak.
Leave this one alone
She could tell right away
That I was bad to the bone. (Lyrics from Bad to the Bone.)
And as it was a female that I was emailing this is exactly what I wanted her to feel!
Accepted wisdom is that one should give the conference organisers an opportunity to respond before letting the world know. I did this in reverse. Why? Well because experience tells me that negotiating with organisations like this is a long drawn out affair. The conference organisers chose to let me know that no interpreters would be provided JUST ONE MONTH before the conference despite having guaranteed me in AUGUST that interpreters would be provided. They offered me a full refund on my fee which I refused. Here lies the no brainer, they complained that they were losing $700 on my registration yet they were willing to give up the full $2099 registration rather than book interpreters. Do the maths.
The reality is that it was not me that was playing dirty but them. They knew very well that by telling me at such short notice that it was unlikely anything would be resolved on time. BUT I am the new breed of advocate and I play as dirty as they do. Indeed it is the only way in situations like this, hit hard and take no prisoners. In no time key speakers at the conference were contacting me and asking if they should withdraw. Others contacted me and told me to stick to my guns and not to waiver on my demands. In short I had a wave of support.
What is amazing is that the conference organisers emailed me by REPLY. Down below the reply was all the internal communication that the company had had before emailing me. I was apparently “An angry gentleman” and it was a “scandal that he has CCd everyone.” I had also taken the liberty of contacting an interpreter supplier to make sure interpreters were available. It was clear that there were and I let the conference organisers know that the interpreter booking agency were “Standing By” to take the booking. This did not go down very well either.
What is more amazing was that the CEO of the organisation was clearly being encouraged to back down and provide interpreters but he chose to go against this advise. What was completely moronic was for him to cry poor over a $700 loss although he was willing to give up my full $2099 registration. As I said to my wife, he had a ticket to Nowhere. Eventually he backed down and agreed to provide. It took only three emails. As a postscript one of his staff contacted me in private apologising profusely and stating that “We advised him of our obligations but he completely ignored us.” The staff, it seems, were totally embarrassed and even humiliated. This is what I call fighting fire with fire – it is not for the faint hearted.
One of the most brilliant and creative advocacy campaigns that I have seen was the recent one by Deaf Victoria to encourage people to put AUSLAN down as their language of choice on the Census. They were everywhere. In your face at every turn urging people to record Auslan on the Census. They were even a little bad too. They created a video that they distributed far and wide, especially through Facebook.
You see they used shock tactics and creative license to galvanise us all. The video, brilliantly made, showed a series of worse case scenarios. At the doctor – no interpreters, at work – no interpreters, at school – no interpreters and so on. The message was – Let the Government know about Auslan because if we do not the Government will stop funding Auslan interpreters and other services for Deaf people thinking that their is no demand.
Of course this was a long term and worse case scenario. Most of us are all intelligent enough to know that. Indeed these sort of tactics are common in politics. Witness Tony Abbott and the Liberal Party’s television advertising campaign about the Carbon Tax. If they are to be believed the Carbon Tax will send us all broke and put thousands on the dole. Sad faced people with no money and no job are central to the advertisement. Of course it is all shock tactics. Totally acceptable, if you are not Deaf that is.
But Deaf Victoria, for their brilliant campaign, came under fire from our “conservative advocates”. They were told they were misleading the Deaf community. That they would frighten people and were asked to remove the videos. They refused, and good on them for that. While certainly some would take the video literally most people are intelligent enough to read between the lines. Deaf Victoria showed the CONSERVATIVES the proverbial middle finger. They showed creativity, spunk and fight. Sure they were extreme but they were also brave and confronting. We need more of it. Deaf Victoria – The new Deaf Australia I say!
But best of all the Deaf Victoria campaign was by Deaf people for Deaf people. It was Deaf people coming out and showing the community how much they valued Auslan. It was an example of what Cannavan described as CENTRALISED advocacy where THE PEOPLE THAT MATTER were in control. There is so little of this in our Advocacy.
Our current advocacy groups largely are about sucking up, toeing the line and not upsetting those people in ivory towers. Softly Softly is the way it has been traditionally done. Sure diplomacy can work but in the Disability Sector this sort of advocacy means that progress is painfully slow. If Cannavan is to believed people with HIV, in 30 years, have taken control of their lives, their needs and their policy. They direct it and are involved at every turn. Where is disability? In the dark ages. Controlled, directed and promoted at every angle by people without disabilities. It is time to take control. A new breed of advocate is needed – We need people with fire in the belly and willing to fight tooth and nail for their rights. There is a place for everything but what we lack are advocates willing to be BAD TO THE BONE! The times they are a changing, step aside any who are faint hearted.