A Fear of Disability (Part Three): Combating the Conspiracies

The first two pieces in this series of blogs focused on the origins of the anti-vaccine movement and the majority of the media’s failure to effectively challenge the myth that the MMR jab causes autism. However, while I hope these made for interesting reading, it’s not likely that I’ve convinced anyone hesitant to get a vaccine. Me telling you that vaccines don’t cause autism is unlikely to make a dent in the belief system of anyone who has built up levels of skepticism towards a scientific consensus. Conversely, I’d like to say that if you’re reading this and your a vaccine sceptic I want to say that I don’t think you’re stupid or uneducated. I understand why you are concerned and you’re right to be a questioning person, even if I do think you are wrong in this case. This blog is going to seek to understand where vaccine skepticism comes from and what we can do about those attitudes.

To have this disscussion I want to draw a distinction between those who proliferate and often profit from anti-vaccine rhetoric and those that are somewhat convinced by that rhetoric, or skeptical for other reasons. No one is going to convince Andrew Wakefield or David Icke that they are wrong, namely because they have built up a brand and business around promoting lies. However, the majority of people worried about getting the vaccine are often worth listening to in order to try to understand thier concerns.

Why are people skeptical of vaccines?

A study by Oxford University found that vaccine hesitancy is not confined to particular groups, and was evident across a range of backgrounds. Hesitancy was slightly higher in the young, women, people on low income, and people of colour or black communities, but the size of the associations was small. There is just as likely to be a vaccine sceptic in your office or university classroom as there is in your local working class community. If you ask people why they are taking the jab, you are likely to have them point out to you that the vaccine protects yourself and those around you. I started this series by passionately pointing out that by not getting this vaccine “you are not just failing to protect yourself, you are failing to protect people more vulnerable to this virus than you are” and I stand by that. However, I also pointed to my fear of needles. Indeed, The Oxford study reveals that vaccine sceptics often worry more about thier own situation. They tend to be unaware aware of the public health aspects of the vaccine, don’t consider themselves at risk, worry about side effects, or fear that it’s been developed too quickly and might be unsafe.

Think of what Andrew Wakefield achieved. He weaponised fear of an abstract idea of what autism looks like and in doing so convinced many parents not to give thier child the MMR jab. Meanwhile, the news filled up with images of screaming children having needles injected into thier arms, and images of him in a lab coat talking about how important it is that we ‘listen to parents’. His study was supposedly scientific, but his strategy was deeply emotionally driven. This is why its important not to simply dismiss people skeptical of vaccines as idiots. When asked to imagine someone close to them falling ill to Covid, vaccine-hesitant individuals say that they’re more likely to get vaccinated.

This is why, rather than simply telling people that vaccines are safe, its arguably a lot more effective to show people that vaccines are safe. Look ar the YouGov study into public trust in Covid vaccines – after tracking public attitudes towards vaccination in the UK, France, Germany and the the US they found that willingness to take the vaccine increased in each nation except the US, where it rose by four percentage points between December and early February before dropping slightly. Meanwhile, the perception that the vaccine is safe has grown drastically, rising from a third of the public to over half in France and by about 10 percentage points in the other nations (see graph). This might be down to people seeing thier friends, neighbors and colleagues get the vaccine unharmed, resulting in public confidence growing over a period of time. This has happened in my social circles. In one experience, a friend of a friend who’s often performatively conspiratorial and initially entirely against the vaccine, told me they were worried about not having received thier appointment letter. That’s how effective showing people evidence of its safety can be.

“Vaccine skepticism, it would seem, is linked to a wider crisis of trust. Our data suggest that people who are vaccine hesitant are more likely to be mistrustful of doctors, are more likely to hold conspiracy beliefs, and to have little or no faith in institutions. They can also feel like they are of lower social status compared to others. What we see here is a combination of vulnerability and distrust of those in authority. That manifests itself in defensiveness. Unwilling to be experimented upon by people who don’t care about their well-being, they avoid vaccination”

Daniel Freeman, Covid-19 Hesitancy In The UK

In the case of the myth that vaccines cause autism, one might benefit from meeting autistic people and seeing that we are perfectly capable of leading normal lives. The idea that vaccines cause autism is a dangerous medical misconception but so is the idea that autism is something to be avoided at all costs or that its something worth risking disease for. In fact, just as the current drive for jabs can’t have benefited from delayed lockdowns, misinformation about the virus on social media and the fact that many people have never experienced a public health emergency on this scale, consider the lack of knowledge about autism. Consider the fact that neurodiversity is not taught as part of the school curriculum, nor often represented in popular media, outside of the occasional, often negative portrayal. It is the responsibility of leaders and communicators to give accurate information on all issues surrounding public health, and to help the public understand issues like neurodiversity. An absence of that only sows mistrust and confusion. Simply put, when people don’t have certainty, that lays the groundwork for conspiracies and snake-oil salesmen.

When not to trust ‘the experts’…

Pleas for others to get the vaccine are often accompanied by calls to ‘trust the experts’. However, this misses the point. People often treat the label ‘expert’ as meaning unbiased, but that’s not always true. In the UK, the reason Downing Street press briefings on Covid are always accompanied by scientists is to give the impression of objectivity, even though many of the decisions made during the Covid-pandemic have been motivated by factors outside of public safety.

Let’s look at another pandemic. The HIV epidemic in the 1980s started with a doctor – Robert Gallow – ‘allegedly’ stealing the work of French scientists and claiming he had discovered a new retro-virus, that was liked with a family of cancer (HTLV) viruses – something that the original paper didn’t support. Importantly, this shows how someone can become influential, not necessarily by providing the right answers but by providing wrong answers to people who are desperately looking for them. This highlights that there is an aspect to getting to be an expert that is not knowledge based. Wakefield did not have the knowledge on autism that he should have had but he was charismatic, and willing to present himself as an outsider that was listening to parents. Most experts haven’t made thier career on being communicators. Still, mainstream media naturally has a bias towards people who are good messengers, even if they might not necessarily be the ones who know the most.

In medicine, patients sometimes get treated like they don’t understand thier own symptoms. Historically, this has been the case with autism, with the condition being blamed on mothers, mental health problems or vaccines, with autistic people left out of the conversation. This can fall along racial lines as well. A report from the UK government shows that black people in the UK are more likely to be arrested and less likely to be treated for mental health problems. Likewise, a study of 18 million people from late 2020 points to black people being twice as likely than white people to catch coronavirus, pointing to structural differences between ethnic groups in terms of deprivation, living conditions and low-wage jobs. Despite all of this a scientific advisor to the government said that racism did not explain the increased risk to people in ethnic minorities. Is it any wonder then that some ethnic minority communities are likely to reject expert consensus by being hesitant to take up the vaccine?

Like with Covid, when the HIV epidemic started there were people who doubted its existence. Even some patients were denialists. HIV diagnoses was a death sentence for many people, so if you were infected you were likely to listen to anyone telling you that you were going to live. One ‘expert’ that courted the appeal of denialists was Peter Duesberg, who infamously denied the link between HIV and AIDS. As one article read – “If the public health service and the media remain silent about Duesberg’s article then gay men will have cause to be greatly concerned. This would mean that thier interests are hostile to ours”. People were claiming that the establishment was lying and that Duesberg was being silenced. Indeed, despite the situations being different, both him and Wakefield thrived off selling ‘alternative facts’ to people who were uncertain.

Looking at these examples, I hope you see why saying to vaccine sceptics “well, the experts think…” is counterproductive, because thier beliefs are deeply based in stories and emotional truth. In fact, while emotion might seem like a flimsy factor to base our actions on, what happened next is incredibly inspiring. During the search for a treatment a number of double-blind trials happened on HIV patients where half of the participants were put on a treatment pill and half were put on a placebo. Initially, after they realised what was happening they started sharing out pills, refusing to risk the possibility of anyone getting sicker. Soon enough though, activists started leaning the medical jargon and teaching themselves the science. They set up trials and tests where they determined the rules for clinical experimentation, and people with HIV came forward in huge numbers. By taking matters into thier own hands, they reminded the experts who they ended up collaborating with that they weren’t just looking for abstract answers to abstract questions, but trying to save lives.

“The arguments of aid’s activists have been published in scientific journals. Thier publications have created new pathways for the dissemination of medical information. Thier pressure has caused the prestigious journal’s to release findings faster to the press. Thier voice and vote on review committees have helped determine which studies receive funding…thier arguments have brought about shifts in the balance of power between competing visions of how clinical trials should be conducted. Thier close scrutiny has encouraged basic scientists to move compounds more rapidly into clinical trials, and thier networking has brought different communities of scientists into cooperative relationships with one another, thereby changing patterns of informal communication within science”

Steven Epstein, Impure Science

This is vital. While Andrew Wakefield’s findings were false, part of the way he convinced people was to make parents feel involved. My argument is that in neurodiversity, we can benefit from more autistic doctors and professionals who work to understand the medical aspects of thier condition but also setting the rules for how autism is discussed in medical circles, as well as media and academia, shifting the conversation from a strictly medicalized ‘how do we fix autism’ vision of autism to a social ‘how do we improve the lives of autistic people’ one. It might seem like a small change but under a system which involved autisitc people in decision making, do you think Andrew Wakefield’s paper would have seen the light of day? And that’s one part of the solution – reforming the channels which decide how we as a society view autism is a big part in stopping theories like Wakefield’s from coming up in the first place, just as encouraging people to get the Covid-19 vaccine means a responsible media and a politics that cares for thier interests. If people are confused and don’t trust leaders, people are likely to turn to simple, but wrong answers. If you involve people and make them feel cared about you’re more likely to win trust.

So, how do you change the mind of a vaccine sceptic?

Like I said at the beginning, there is no set way to change the mind of someone who’s hesitant to take the vaccine. I know for a fact though that one thing you shouldn’t do is call them an idiot. As we’ve explored, these are often people who feel mistrusting of thier government, confused and worried. Insulting them is not going to help.

The first thing to realise is that not all unvaccinated people are anti-vaxxers. A survey done in the US found that about 14% of US adults said they would “definitely not” get the vaccine. Many others are in a “movable camp.” Roughly 16% either want to get the vaccine as soon as they can, are waiting to see how the vaccine affects other people before getting it themselves, or will get it if they are required to. Most of the conversations I have had with vaccine hesitant people have focussed on a fear of needles which is something I can definitely relate to, or even factors like social anxiety – a particularly pressing issue in the lives of a lot of younger people, and individuals on the autisitc spectrum.

Despite this, when someone says that they are worried about getting the vaccine, a mental picture forms of exactly the sort of person you’re talking to. It’s often presumed that they are part of a homogenous group of conspiracy theories, who unflinchingly buy into ideas like those proliferated by Wakefield today. However, as we have seen, this is not the case. Many racial minorities in America particularly have families who have experienced actual, proven cases of medical experimentation like the Tuskegee Syphillis Experiment. Others have health issues that they fear might be impacted by the vaccines. Its always helpful when talking to a vaccine hesitant person to find out why.

From there, you can tailor what you say to that person. I made a point of saying in part one that while I am terrified of needles and was anxious to get the vaccine, I was surprised to learn that the jab didn’t hurt, and the whole process was very quick and easy. Likewise, if someone has concerns about authority or a general distrust of government, use that as a basis for a reasonable conversation. Most people have doubts that the government is always working in thier best interest. If you’re trying to convince someone of something as important as getting the vaccine, its vital to build up a level of trust, but also ask questions like “what worry’s you about the vaccine?”, to get the person to evaluate why they are skeptical. Appealing to a persons emotions is also valuable. You can recite as many facts about how the vaccine works as you want but its not going to work because skepticism is primarily emotionally led. Instead, focus on how by getting the vaccine the person is protecting thier friends, family members and communities. Reassure them that the vaccines have been tested and that there’s nothing nefarious in them, without getting overly technical. Vitally, give people time to change thier minds. People don’t like admitting they are wrong and so its important to give people time to think about what you have said and come to a conclusion on thier own.

An Atypical Perspective…

I started this series of blog posts not to degrade vaccine-hesitant people but to find out why Andrew Wakefield was able to convince so so many. A large factor was that he predicated his campaign on falsehood, using his status as a doctor to get his theories into established medical circles, and perform his studies in way’s he should never have been allowed too. He was supported by a largely unquestioning media, who he courted the hysteria and sensationalism of. Most importantly though he made people who had never heard of autism and frankly deserved more support feel listened to. He simultaneously presented himself as an ‘expert’ while using a populist narrative to drive the idea that the medical establishment didn’t care about the children of these parents, and the evidence of long waiting lists for diagnoses, poorly funded and severely limited support systems for autistic children, and lack of information about autism in the public eye shows that – in his selfish aims – he tapped into something real.

Vaccine skepticism, concludes the Oxford study cited earlier, is linked to a wider issue of people feeling vulnerable and having a distrust in authority. They then take comfort in people who tell them that they are right to feel defensive and vulnerable. This is why I emphasise this point about communication. Messaging about vaccines and pandemics should always be accurate and clear, just as messaging about issues like neurodiversity should always be accurate and clear. “Most people can see vaccination as the light at the end of the tunnel, but they are also looking – perfectly reasonably – for information they can trust”.

An important part of this, in the longer term, is going to mean reshaping our institutions to win back the trust of all those sections of society that feel disaffected by them. That’s obviously no easy task but part of this will mean authorities understanding why different groups are mistrustful and working to remedy that not just through messaging but through behaviour. I can only speak for myself but one stride we could take for the autisitc community would be to stop treating our neurological differences as problems, which would do a lot in helping others to understand the condition and treat autism with respect. There are plenty of other forms of marginalization that have led people to question the validity of experts. As the pandemic has made clear, without trust its easy to find ourselves stranded in crises situations, where the easiest thing to do seems to be to trust the people with the easy answers. Many people on the autistic spectrum know that all too well.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s