It will probably not come as the biggest shock to anyone who knows me that I am not a very nice person.
Like, I am reasonably pleasant in real life and generally I don’t go out of my way in person to say deliberately offensive things.
Online however, I am a bit of an arsehole. I deliberately make provocative statements on Facebook (hoping to Dickens that a reasonably locked-down Facebook profile and a shared name with a C-grade Aussie celebrity will afford me the professional distance I clearly do not deserve). Over on the Mamamia Facebook page, I am cold hard BITCH. And in particular, I am not very nice about pseudoscience.
In February, I noted on my own FB wall Jess Ainscough’s passing after choosing Gerson therapy over conventional means while publicising her ‘miraculous’ healing. Cancer fraud is an area I am particularly passionate about, for a number of reasons:
- I have met people who have died after eschewing effective, evidence-based treatment for Gerson therapy. I have seen what it does to their families and their children.
- I am the daughter of a woman who has (touch wood) survived colon cancer which metastasised to the lymph nodes, liver and lungs five years after diagnosis.
- I cannot think of anything more horrifying than a terminally ill person who has spent time, bucketloads of money and pain-free time with their family in being tied to isolating, unpleasant and unproven treatments.
- And, most importantly, if I were twenty-two, knowing what I did at the time, I would have made the same choice.
Seriously. That is sincere. If you were twenty-two and offered a 75% chance of survival IF you had a radical amputation of your dominant arm and shoulder, would you listen to the rushed, seemingly impersonal doctor who doesn’t have to live with the inconvenience and disfigurement? Or would you pay more attention to a slickly-designed website showing a clean, expensive-looking clinic, promising an amorphously optimistic cure without any surgery or chemotherapy?
And remember: your decision-making is hampered by not having studied any science or maths at school or uni, by mainstream media which frequently presents pseudoscientific treatments as valid alternatives to real medicine, and by a patriarchal culture which values feminine beauty and wholeness over real health and agency, and which punishes people (especially women) who are too critical or not positive enough.
(Unlike me, you might not have a very sceptical atheist surgeon for a parent who is well-versed in the lingo of quackery to potentially talk you out of it. ILY, Pete.)
So I made a post.
And for the most part, people responded to it favourably.
Until they didn’t.
I don’t begrudge the right of anyone to disagree with me. For this, I am aware that people who knew her felt raw at her passing. They have my empathy and sympathy.
My goal right from the outset was not to disparage Jess Ainscough – who was probably a very nice person and likely a good friend to those she knew. I do not believe she set out to defraud people by lying about her condition – and I certainly don’t think she was lying when she said she thought she was cured of her condition. I certainly didn’t make my post with any sense of Schadenfreude, and I happily donated $50 in Jess’ memory: $25 to Edgar’s Mission (Jess’ nominated charity) and $25 to the Cancer Council in her name. Her passing was genuinely tragic, and she didn’t deserve to die or for her cancer to spread. Just like anti-vaccine parents don’t deserve to have all seven children fall ill to whooping cough. Illness is not divine retribution, deserved comeuppance or a logical response to physical or cosmic bad living: it is a kick in the gooch to whoever suffers it, and nobody deserves it for any reason.
I genuinely took about five minutes to get off line, clean my kitchen and think about the post I had made. I wondered if I was being ethical, or considerate in the face of people grieving. I did, in all honesty, think of taking it down.
I chose not to, for several reasons:
- Believe it or not, I am as clairvoyant as any psychic (that is, I have no powers of clairvoyance). I have no way of knowing if any of my friends know public figures, particularly those who may have passed. Had I posted about anyone else who died of pseudoscience who wasn’t personally known by anyone who follows me on FB, I doubt I would get a response.
- I doubted my responses would be different if I had waited longer: people largely agreed with me, regardless of when it was posted (or at least I never heard back from another person who disagreed with me).
- And most importantly, as a blogger with 60k followers, representation by Harry M Miller, an extensive affiliate marketing network of other wellness bloggers, endorsement by mainstream media outlets such as the Sydney Morning Herald and Dolly Magazine, a book deal and numerous public speaking engagements, Jess Ainscough was very much a public figure whose means of passing was absolutely a matter of public interest. She courted public attention, advised cancer patients to abandon conventional treatment, and certainly advised at least two women to undertake Gerson who later died of their cancer. Once again, I do not believe she set out to defraud anyone, but her intent was to convince the public that Gerson therapy – a form of treatment that has never been proved to cure a single patient – is a worthwhile treatment and responsible for her longevity. She was sincere in her intent, but you can piss good, sincere intent up a wall if it results in harm to people.
As far as I am concerned, no time is too early or too tragic if it means drawing public attention to the harm pseudoscience and cancer fraud can do. In the end, I left my post up in the knowledge that I may lose friends, that I might receive recrimination, and that people had the right to disagree with me. I was fortunate to have the support and agreement that I got, and though I actually hate making people I know and like feel uncomfortable and hurt (deep down I am a softie), I would rather be an unpopular person who stopped even one person from considering Gerson than a smiley, happy spouter of platitudes I don’t personally agree with.
I think those people who say things like “I tell it like I see it” are dickheads. (Hey, I’m just tell… oh.) 99% of the time, they are making a dumbass, insulting or even bigoted comment about someone’s appearance, about the imagined proclivities of people on the basis of their sexuality, or just being dickish in general. I think ‘blunt speaking’ or ‘political incorrectness’ is usually just euphemistic for subjective bigotry or uncharitable thinking, and I am pretty proudly politically correct on most things.
But not on objective matters such as evidence-based medicine, obvious fraud or human suffering through deception.
I might not be very polite to people who espouse inaccurate beliefs which are easily proven wrong, and I might not be very polite to practitioners of pseudoscience who knowingly take money for treatment that does not, and will never, work. I might not be the shiny beacon of politeness and positivity that other bloggers might be, but I do this because of personal ethics.
I think it is wrong to offer false hope to the suffering.
I think it is wrong to blame cancer patients whose disease metastasises or fails to go into remission for not being positive enough.
I think it is wrong to publish, in the media, accounts of people who promote clearly untrue things like Gerson or healing oneself through clean living without using a scrap of critical thinking to even assess whether these claims are possible or plausible.
I love American feminist Barbara Ehrenreich, who has written about the poverty trap and the credential inflation caused by the unthinking middle class emphasis on higher education. If I were to invite three people to dine with me, she would be at the top of my list. Most notably, she wrote the excellent book Smile Or Die about the dangers of uncritical positive thinking. A breast cancer survivor herself, she has brilliantly elucidated on the dangers of relentless niceness and a reluctance to be critical of anything. As a philosophy, I agree entirely – and I believe myself, despite this wilful critical nature, to actually be quite a content and happy person with a good outlook on the world.
But it is more than this: in Australia, we are so quick to be critical on anything political or cultural (and have an outstanding array of satirists as evidence of it). When it comes to incredible claims, like those made by Belle Gibson or even Jess Ainscough, we are so unwilling to apply any vocal scepticism or even active thinking. Fairfax and News Ltd journalists alike failed to ask could this be true, or could I be promoting dangerous, fatal advice to potential cancer sufferers, and there are a couple of reasons for that.
First and foremost, sceptics – particularly critical female voices – are silenced. We aren’t very sexy (myself especially), and we aren’t very acceptably feminine -nurturing, accepting, acquiescing – when we do it.
Secondly, we lionise cancer sufferers as being heroic, faultless, and superhuman. I don’t think this is a good thing. I think this is a dangerous, dehumanising thing which ignores the real pain and suffering that cancer patients experience physically, financially and socially. It ignores how they are at their most vulnerable, and how they need community support to make informed choices: rather, it presents them as undoubtedly wise and all-knowing beings who are imbued, by their disease, with knowledge none of us can hope to attain without being similarly sick. That cancer patients are dying in their thousands from unproven, ineffective treatments show they are just as human, irrational and in need of guidance as any of us.
Thirdly, we have come to distrust medicine and evidence based science. We see doctors and scientists as cold, introverted, impersonal and uncaring – ignoring that doctors and scientists themselves are not immune to cancer or death, or that not a single doctor or scientist complained when we could phase out iron lungs from hospitals when we eradicated polio.
There is much to criticise about pharmaceutical companies, and particularly their insidious advertising and control over medicine abroad. Here in Australia, their reach is limited by tight regulation. They are responsible, at large, for poor use of data, badly controlled trials, and for the death or suffering of people who take medications that are not proven for their safety. But just as we don’t turn to magic carpets after a spate of airline disasters, this is no reason for turning our back on treatment that works, or for being positive about things that do not work.
Which brings me to the odious reporting of the probably very nice Candice-Marie Fox: she of the “I totes healed myself with pineapples and fruit, seriously you guys, no joke”.
Substantially there is not much to separate her from Ainscough: a young woman diagnosed with cancer in her early twenties, she benefitted from surgery and radiology initially, only then to choose an alternative path since then for her thyroid cancer. Others have written about her far more comprehensively (Violet over at Reality Based Medicine, who was one of the first public critics of Belle Gibson, has written extensively on the subject, and her work and the work of her contributing writers is worth the read).
The worst thing of this story is the credulousness with which the account was promoted by mainstream sources such as the Daily Mail (suspend your disbelief, for a moment, that they might behave unethically), so soon after the debunking of Gibson and the deaths of Polly Noble and Jess Ainscough after their abandonment of conventional treatment.
This isn’t just lazy clickbait. It is criminal pleasantry – where entertaining and promoting this woman’s unverified, likely inaccurate account of events without any sense of critical thinking, all because she may seem nice.
The public deserve a stronger standard of reporting and a greater degree of critical interrogation. Australian and US journalists normally do it so well, and in particular journalists like James Foley and Peter Greste put their lives and liberty on the line to report the truth in some of the most dangerous political landscapes on earth.
For journalists working in safe, developed countries, with the benefit of extremely qualified experts and specialists to fact-check with, that the Daily Mail could post the initial account at this particular time is damningly unscrupulous and unethical.
I will go on the record of saying I do not care if any of my friends know Candice-Marie. I do not care if I ever have to face her in person. But now, when we have enough evidence to know that people are being scammed out of their finances and out of their lives, it is time to stop playing nice and to start speaking truth to the overwhelming power of social convention, the multi-billion dollar fraudulent pseudoscience industry that profits from the desperation of thousands, and to Candice-Marie and anyone else who feels they deserve to profit financially or in terms of attention from misleading the public.
Oliver Wendell, some bloke I have otherwise never heard of, said this:
Truth is tough. It will not break, like a bubble, at a touch; nay, you may kick it about all day like a football, and it will be round and full at evening.
I like it.
You can go feed the ducks with nice. It may placate, soothe, appease and persuade, but when it comes at the cost of human life, it is worthless. If I am in a car crash, I don’t want someone uselessly holding my hand while my life ebbs away from me; the on-call emergency surgeon might be rough as guts, swearing as they push me into surgery, but their treatment – evidence based, effective and done quickly thanks to expertise and education – will save my life.
I am sorry if I have ever made you feel lousy, or unsupported, or stupid. But when it comes to fraud, I don’t care for being nice.
All the nice in the world won’t bring back Jess Ainscough – but the nasty truth might stop another desperate cancer patient and yes, maybe even Candice-Marie Fox – from experiencing her fate.