A Fear of Disability (part two): media ableism

In part one of this series, I discussed the origins of the modern anti-vaccine movement, particularly focusing on Andrew Wakefield’s now discredited study claiming that vaccines cause autism. This part of the blog post will look at very different media responses, asking why Wakefield was allowed to have his views so widely promoted. Its worth noting that as inaccurate as the study was, and as fraudulent and abusive as its methods ‘might have‘ been, movements against vaccines don’t start because of a study. Most of the people protesting the vaccine didn’t read the paper, and sadly most of the journalists reporting Wakefield’s claims didn’t either – it wasn’t so much the content of the study which mattered to Wakefield and Richard Barr – the lawyer who was paying him – but the existence of the study.

The media still sometimes look to cure autism. Case in point – in 2019 ‘Get Well’ magazine published a cover that read “Reversing autism – reigniting your child’s brain”. Inside were pages of pseudoscientific nonsense on ‘autism recovery’ and how the brain can ‘feel its way back’. This would have probably gone under the radar if it weren’t for Sophie Walker who tweeted the following:

This is not how a healthy media discusses autism. Autistic people have to learn to deal with a society that so often feels rigged against them, only to be confronted with the idea that thier brain need’s ‘ignition’. It says a lot about how we think about neurodivergence that some talk about risking measles or covid as a sensible and necessary alternative to thier child being autistic! Sadly, Get Well didn’t recognize that with a response that could have been written by Wakefield himself: “They want to shut down the debate and deny genuine hope to people who are seeking ways to improve their lives and those of their children”

Part of the reason headlines like these are effective is that outrage is built into thier DNA. For many journalists reporting the vaccine scare as fact, the threat of being seen to ignore a potential risk was too tantalizing. “Child vaccine linked to autism” – that was BBC news. “New evidence links MMR to autism” – The Sun. “MMR Safe? Baloney” – Daily Mail. Everywhere you looked there were news reels showing images of crying children. Either that or it was Wakefield talking about having ‘sufficient anxiety’ about the MMR jab and recommending people get the separate measles vaccine, which he patented. I was growing up in the mid 2000s, and becoming conscious of my autism. I don’t remember much of the news reports but I do remember the images of sharp needles being broadcast and people talking about the vaccine threat as something tangible. This was the same time when autism was widely assumed to be male-only, and society was only beginning to see past the theories developed by Kanner and Asperger. It unnerves me to think I was growing up in a time when some in the media were calling into question part of what defines me as a person!

Vaccine Hysteria…

The influence of Wakefield’s study cannot be understated. Research from Cardiff University undertaken in 2003, point to how most people at the time wrongly believed that doctors and scientists are equally divided over the safety of the MMR vaccine. In effect the media falsely created the impression that the medical establishment was split down the middle in spite of almost all doctors doubting Wakefield’s study. The media outlets who promoted the paper would argue that they gave equal coverage to both sides of the argument and therefore were being balanced. However, this ignores the fact that giving equal credence to two sides of a story is a biased act in itself, as that treats those contrasting view points as equally valid. ‘Impartiality’, insofar as that actually exists, is not the blind reporting of ‘both sides’ but the attempt to use ‘unbiased’ and fair investigation methods as a means of finding ‘the truth’. As Nick Davies explains, thats neutrality, not objectivity:

“Neutrality requires the journalist to become invisible, to refrain deliberately, from expressing the judgements which are essential for journalism. Neutrality requires the packaging of conflicting claims, which is precisely the opposite of truth telling. If two men go to mow a meadow an done comes back and says ‘the job’s done’ and the other cones back and says ‘we never cut a single blade of grass’, neutrality requires the journalist to report a controversy surrounding the state of the meadow, to throw together both men’s claims and shove it out to the world with an implicit sign over the top declaring ‘we don’t know what’s happening – you decide”

Nick Davies, Flat Earth News

This is exactly what happened with Wakefield’s study. Research from the Open University found that the source of the claim that ‘MMR causes autism’ – Andrew Wakefield’s paper – is mentioned in only a quarter of the 561 stories they recorded. Coverage of the controversy compounded fears. “Ministers continue to insist the MMR jab which some doctors have linked to autism is the best way of protecting children” – ITV News, “The government has mounted campaigns to persuade parents” – The Times, “New health fears over big surge in autism” – the Observer. These give both views but they are clearly not unbiased as they play into existing fears of authority and an ignorance of the science which launched the anti vaccine movement. Indeed, the framework here clearly places the burden of proof on the side of those defending the MMR vaccine!

I cannot stress enough how more than Y2K and the Great Moon Hoax of 1835, this is truly an example of media failing in thier commitment to be responsible. 53% of people surveyed in the Cardiff work assumed that because both sides of the debate received equal media coverage, there must be equal evidence. Only 23% of the population were aware that the bulk of evidence favoured supporters of the vaccine. This wasn’t helped by the fact that Wakefield’s study was accompanied by an immediate press conference where he told the world about his ‘bold’ theory.

The media coverage caused lot’s of parents to be concerned and plenty to not give thier child the vaccine. There was also a political aspect to the story – although it wasn’t until later that Wakefield became an unbridled peddler of conspiracy theories, the deeply populist idea that the medical establishment weren’t listening to parents was always a core part of his pitch. Prime Minister Tony Blair came under pressure in parliament to reveal whether his three-year-old son had received the jab. He refused to disclose this. As a result, national take-up of the MMR jab dropped from around 90% in 1998 to less than 80% in 2003. I would remind everyone that had most journalists looked into the source of the funding, Wakefield’s alternative vaccine patent or into the practices of the study itself, they might have arrived at very different conclusions.

Confidence in the MMR vaccine, and indeed other vaccines has never fully recovered. An outbreak of measles among the American-Somali community in Minnesota was caused by doubts about the MMR vaccine. Wakefield had been a visitor to the community seven years earlier, talking to them about the risk of autism. That same year there were large outbreaks in one in four European countries with over 20,000 cases of measles, and 35 lives lost. If it weren’t for Wakefield we could be well on our way to eradicating measles. Sadly, the deeply ableist anti vaccine-movement which is spearheaded by him, continues to risk the lives of children around the world.

Exposing Andrew Wakefield…

While many journalists reported Wakefield’s findings as fact, its important to remember its wasn’t every journalist. Jon Snow gave him a fairly rigorous interview, and some outlets focused more heavily on he fact that the theories weren’t popular with the scientific community. However, only one journalist went to investigative lengths to expose Wakefield’s lies – introducing Brian Deer. He found that the aim was to ‘discover’ a “new syndrome”, intended to justify litigation on behalf of thousands of British families, recruited through media stories. It was also him who found out about Wakefield’s alternative vaccine patent. This led to public uproar in Britain, the retraction of the Lancet report’s conclusions section, and, from July 2007 to May 2010, the longest-ever misconduct hearing by the UK’s General Medical Council.

Wakefield never agreed to an interview with Deer. However, there was a moment where Deer was able to confront him. Wakefield ran away:

More than the many examples of lying, it was Deer who discovered that Barr paid Wakefield with money from the UK legal aid fund: run by the government to give poorer people access to justice. Wakefield charged at the extraordinary rate of £150 an hour. The law in the UK requires doctors to state potential conflicts of interest in thier work – these payments were completely undeclared, despite the fact that Wakefield and his team took £26m of taxpayers’ money trying to prove that MMR caused a new “syndrome” which the doctor had already dubbed ‘autistic enterocolitis’ before he performed the research which purportedly discovered it. Do you see why I view the fact that few journalists were discussing this as strange? The Barr-Wakefield deal was the foundation of a vaccine crisis that would continue to have lasting ramifications, and yet the worlds media barely reported the evidence.

Wakefield understood how much money he could make from the scare he started and sought to exploit that. He falsely denied the existence of an alternative vaccine patent but a peek behind the curtain showed that here was even more than that at play. He had set up a network of companies intended to raise money for numerous schemes including autism testing kits and even a cure for autism which were all set out in confidential documents obtained by Deer. He triggered a moral panic and even before he was struck off the medical register, he planned to make millions from that. I’m thankful that he wasn’t successful in making his ideas mainstream, even if he continues to profit from talks to conspiracy theorists.

Regarding the battery of invasive procedures which the children in the study underwent, this sort of research is governed under international law by the Helsinki Declaration. There is no way any ethics committee or board would have approved a regime of risky operations for what was essentially a trial study, but Wakefield needed that approval for his study to be published. What did he do to get around this? Well, he simply lied, reporting that these procedures had been approved by his hospital! Despite denials, no such approval had ever been given.

In response to Deer’s investigation, Wakefield denied any conflicts of interest, even going so far as to deny that he ever said that MMR jabs cause autism. This was despite the fact that he was at this time continuing to produce reports arguing for his theories from Thoughtful House in Texas – an organisation he set up after refusing to do a larger study into his ideas, got him fired from the Royal Free hospital in 2001. Needless to say throughout the investigation, the former doctor acted like an unrepentant child, refusing to cooperate and denying every accusations all while his supporters hurled slurs.

Its worth pointing out that for as much influence as Wakefield’s theories had, with help from the media, Brian Deer’s theories were just as important, seeing media coverage around the world. In 2004, the prime minister of the UK came forward to make a statement about the importance of getting the MMR jab, the case against the vaccine collapsed relegating anti-vaxxers to a fringe if still far too influential minority. Vaccination levels rebounded. In the US, the academy of pediatrics stated in response to Deer’s work that “numerous studies have refuted Andrew Wakefield’s theory that MMR vaccine is linked to bowel disorders and autism. Every aspect of Dr Wakefield’s theory has been disproven”

An Atypical Perspective…

Wakefield’s success always depended on the fact that he would have a captive audience. That’s why he hosted a press conference on almost immediately after releasing his study. That’s why he fled from Deer rather than being asked difficult questions. he knew that he wouldn’t have medical opinion behind him so he needed ‘public opinion’ to give his idea legitimacy. It was journalism, of a sort, which elevated him to rockstar status and even saw a 2003 film called ‘hear the silence’ being made, where Hugh Bonneville played a heroic Wakefield rebelling against a shadowy cabal of physicians and government agents. However, it’s also journalism which brought him down and exposed the man as a ‘liar and a fraud’, making sure that no attempt to replicate his findings would ever be successful.

This to me highlights the power of public persuasion. The perception of vaccines didn’t just change, the perception of autism did too. If autism is perceived to be something which occurs unnaturally that with that unfortunately comes the question of ‘what do we do about the autism epidemic?’. However, if its something that occurs naturally – which we know to be a fact – then the question should become ‘how can we help whilst also accepting autistic people?’. And just like that, we’re back to the medicalist vs. neurodiversity debate. There are some outlets who are still keen to shift the conversation in the direction of the former. That Get Well cover is far from an isolated incident and there are plenty of cases where an autistic person is reported to have done something wrong with particular regard to thier condition. The media’s responsibility in my view has to be pushing towards dismantling the barriers which cause autisitc people to struggle and debunking the misconceptions about autism which enable people like Wakefield to flourish. There are plenty of independent content creators doing this and I’m happy to add my voice to the conversation. Crucially, to stop history repeating itself we need to adopt a neurodiverse led conception of neurodiversity, into the wider conversation. Journalism presents boundless potential for that.

The third and final blog post in this series will look at combatting conspiracies and debunking myths about autism.

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