I‘ve been umming and ahhing on whether to post this, because it doesn’t really fit with this blog. I know I do vaccine posts occasionally and it’s always a balancing act, but this isn’t really about vaccines at all. It’s about information, and if bloggers and social media users (ie you readers) don’t talk about this, who will?
I’ve talked about it more on my education blog because it’s one of my particular interests as a part of critical literacy – how do we decide what is a good source of information? This is even more important now because information can come from anyone and anywhere – you’re reading this on a self-published blog! As those who are actually using the internet the most, we have a vested interest in shaping its direction, and I for one hope that we can evolve ways of judging the reliability of the information we are getting.
While I have enormous fun socialising, reading and arguing on the internet, one of the problems that comes up all the time is – how real is it? How many of us feel the need to switch off occasionally to reconnect with reality? And wouldn’t it be better if we could find ways to blend our worlds? I mean if I’m going to put so much time and energy into the internet, it would be nice to know that it actually achieves something.
Enter Stop the AVN.
I first discovered the Australian Vaccination Network when my eldest daughter was born and the vaccination question came up on a mothering forum I frequented. I must admit my first reaction to reading their site was jaw-dropping shock – are you kidding me? How can people write this stuff? There were no references. There were silly mistakes confusing viruses and bacteria. Things that screamed out to me with my specialist training, but wouldn’t necessarily be obvious to people in different fields. And running through it all was the conspiracy thread – you can’t really trust the government, it whispered, they are in the pocket of big business and don’t have your best interests at heart. But it was never so blatant, and I can see how it would appeal to a demographic who were (at that time) deeply discontented with the long-running Howard government.
And right upfront were the pitiful stories. The images of children ‘damaged’ by vaccines. But while they were tragic and difficult to read, the only connection to vaccines was ever ‘her parents believe.’ As a new Mum myself I knew that parents believe all sorts of weird and wonderful things, especially when their children are in pain or upset. It doesn’t make them true. And I was deeply angry that these poor children and their families were being used to hurt other children, which is becoming heartbreakingly obvious with the outbreaks of vaccine preventable diseases and the death and hospitalisation of unvaccinated children.
I spent several years on my little corner of the internet writing about why the information from the AVN was not trustworthy, and then I ventured onto Facebook and discovered Stop the AVN. This is a group of like minded individuals, held together by nothing more elaborate than a Facebook page. And we are dedicated to taking the fight against the misinformation of the AVN off the internet and into the real world.
There have already been several successes, especially the complaint to the NSW Health Care Complaints Commission, which found that the AVN provided information that was ‘false, misleading and solely anti-vaccination’ and issued a warning against them as a danger to public health. And their many financial irregularities were investigated by the Office of Liquor, Gaming and Racing, resulting in the loss of their charitable fundraising licence and further investigations. [Update: The AVN have since won a court case to show that the HCCC did not have jurisdiction to issue the warning. It does not affect the validity of the warning, even though it has been retracted.]
Meryl Dorey, who is the AVN, is no longer the go-to person for television and radio to provide ‘balance,’ whatever that means in science, and ordinary Australians are fighting back in blog comment sections across the internet, pointing out that this is not a matter of other people’s opinions, which might deserve respect, but scientific facts. This is incredibly exciting, it shows that our community is beginning to have the conversations we need to have to keep the internet useful, not leaving it to governments and Google but doing it ourselves.
And just as the tide was turning, as citizens of the internet were deciding what was valid information and the standards we should be working to, the Woodford Folk Festival decided to give Meryl Dorey a platform to tell lies about autism. That may sound harsh but the title of her proposed talk was a lie referring to a paper that, as usual, didn’t say what she thought it said, so it’s a relatively safe call. In fact I’ve written out a prediction of the top 5 lies she will try to tell, I’ll be very interested to see how many I get right. [Four as it turned out, I missed one.]
This was picked up by bloggers and Stop the AVN, and MamaMia and traditional media got on board. Along with literally thousands of commenters, ordinary internet citizens voicing their displeasure, writing emails and standing up for our right to trustworthy information. Eventually Woodford realised what a public relations nightmare they had wandered into and they have changed the format to include an actual, you know, immunologist and a moderator from Doctors Without Borders.
I have to admit I’m not entirely happy with this – how exactly do you balance a conspiracy theorist who has been found to be a danger to public health against a professor who has spent years studying and doing genuine research and a doctor from a Nobel prize winning organisation? I think it is false, and I don’t know why people would want to get health information at a folk festival anyway. But at least they took notice of the outrage.
Emotions and manipulation through fear? Check.
Nuance and facts? Not so much.
An example of using the power of the internet and social media to effect real world change? Priceless.
To all my readers I have both a question and a challenge – how do you decide who is worthy of your time? How do you decide what on this enormous, un-edited, un-reviewed, free-wheeling, not-quite-linked-to-reality smorgasbord of information overload you will trust? Do you read critically, asking yourself if an article has the evidence to back it up? (And please do answer in the comments, as a teacher I want to know.)
To all the quacks and conmen who are currently cluttering up my, and your, internet, I have something to say:
Look! Up in the sky!
It’s a bird, no.
It’s a plane, no.
It’s social media users who are learning to take back our internet, and we’re developing into effective real-life activists.
Update: This blog is part of a social media blitz, of linked and co-ordinated posts all going live at the same time as an offline event. And now that the embargo is off, that ending was more than a bit of nostalgia. One of the real world things Stop the AVN did today, was to organise a plane with a banner to fly above Woodford as the forum went ahead with a simple message:
Enjoy this article? Subscribe to the weekly newsletter to hear about them all. Or grab my RSS feed