Jeanette Winterson: Art and ‘Misrepresentations’

Healing fools. The seemingly miraculous ability of our bodies to naturally fight and recover from illness, and our inquisitive brains that are eager to seek out causative patterns in all things, means that we all too readily attribute our healing moments to whatever magic beans we were rubbing at the time. Some are so impressed by their own healing stories that they start to make businesses selecting the appropriate beans for others’ healing. And the rest of us listen to the tales of the healing fools, as a sincerely told story appears to hold such power over us. Without care, we all risk becoming healing fools.

Healing stories, or anecdotes, are the rocket fuel of alternative medicine. No matter how carefully the evidence against a treatment has been collected , or the shear implausibility of a mechanism has been explained, somehow the heartfelt and sincere story of a fellow suffering human trumps all reason. As humans, our evolved brains resonate with the stories of those we trust. But, if we care about our health, there are good reasons why we should distrust such healing testimony. Humans are fallible in many ways, and our willingness to see patterns where none exist, our readiness to please those that do us favours, and our desire to believe that what we wish to be true, leads to the stories of quackery taking a deep hold.

And when our illnesses are life threatening, we need good stories and effective actions to guide us back to health.

Let us look at two stories. The first is from Jeanette Winterson’s defence of homeopathic AIDS clinics that appeared in the Guardian a couple of weeks ago,

Edwin Cameron, a justice of South Africa’s supreme court of appeal who is HIV positive, has done much to counter the disastrous Aids denialists there. He visited Maun and agreed in writing that “there are patent health benefits”. He also admitted that, although initially sceptical of homeopathy, he had had a persistent mouth and gum disease, untreatable by antibiotics, but which was cleared by homeopathic intervention.

As Winterson might say, ‘dramatic stuff’.

More drama in the second story:

It was very dramatic. By the end of October 1997, I suddenly became very sick with a lung infection… I had lost an enormous amount of weight, my immune system had stopped functioning and the virus was raging throughout my body.

I knew that I had to contemplate this treatment… which was fantastically expensive… way out of the reach of most Africans with Aids or HIV.

Within 10 days of starting anti-retroviral medication, I knew that a physiological miracle was happening within me. I knew that the virus had come to a standstill. I felt my health, my energy, my appetite and my joy for life returning.

Now, I can tell you that one of these anecdotes is probably a misrepresention – the other is probably a very fair representation of reality. Which story do we trust? How can we tell these superficially equal plausible accounts apart?

The temptation is to look at the authority of the story teller. The first anecdote is told by ‘top intellectual’ Jeanette Winterson about the experience of a Supreme Court Justice; the second, by some anonymous African. But as even Winterson would tell us, we cannot and should not privilege the author in finding meaning. But where I might start to differ from Winterson is that we can privileged science. We can attribute authority to the process of collecting data, compiling evidence and testing against theory. The authority of science comes from its constant quest to falsify: ten thousand voices looking to criticise, to find holes and to knock down. When an explanation is left standing, then it can gain the authority required for us to place trust. And when wanting to heal desperately ill people, we need good authoritative evidence and theory, and to not be fooled by our ‘authoritative’ stories.

And fortunately for millions of people, there is authoritative evidence for how HIV infection can be managed so that they can lead normal lives without undue risk of death. This is not the place to go into that evidence – you can look into it yourself. The Cochrane HIV/AIDS Group compiles a list of of all the evidence for various therapies and treatments, both biomedical and behavioural/social. How very holistic. It goes without saying that homeopathy plays no role in the evidence base of how HIV/AIDS may be managed. Antiretrovirals have proven very effective and have saved countless lives.

It would look as if the teller of our second anecdote was much closer to the truth. But with all good stories, there is a twist and the unexpected. I was not entirely truthful about the second story coming from an ‘anonymous African’. The speaker of those words was indeed also the Honourable Mr Justice Edwin Cameron of the South African Supreme Court of Appeal.

Justice Cameron is a startling character and one of the foremost Human Rights activists in the world. He was instrumental in ensuring South Africa had the first Constitution in the world to protect the rights of gay and lesbian people. He was appointed by Nelson Mandela to join special commission into illegal arms trading. Importantly, he has made huge progress in ensuring that South Africans have access to antiretroviral drugs and has been confronting the denialist stance of senior politicians in the region, eventually resulting in President Thabo Mbeke conceding and giving the go-ahead to distribute essential drugs to those that need them.

So, can both anecdotes be true? Can someone who has campaigned so vigorously for medical intervention for Africans with HIV really be a supporter of homeopathic quackery? Well, maybe a letter that Cameron sent to the Guardian (so far unpublished) will answer that,

Jeanette Winterson in her defence of homeopathy (‘In defence of homeopathy’, Guardian Tuesday 13 November 2007) ascribes words to me I never used. On a visit in June this year, I was impressed with the work of the Maun homeopaths, which is strictly supplemental to the Botswana government’s provision of anti-retroviral treatments for AIDS. But I did not say there were patent benefits to homeopathy – nor could I have. I merely noted that patients reported experiencing such benefits.

A key point I have made in my challenge to the South African government’s response to AIDS – including President Mbeki’s lamentable dalliance with AIDS denialism – is that medical facts are best determined by science. I am not a doctor or a scientist. Winterson is therefore on the wrong tack to invoke – and quote incorrectly – my personal impressions in this field.

Edwin Cameron, Supreme Court of Appeal of South Africa

Dramatic stuff.

Now one thing I would disagree on is that Maun homeopaths can be ‘strictly supplemental’. That is something they find very hard to be, as the whole philosophy of homeopathy is defined in opposition to real medicine and what they call ‘allopathy’. Homeopathy is an alternative medicine and not a complementary medicine. As such, it risks people putting their trust in the wrong places. It is worth repeating the words of Yusef Azad, Director of Policy and Campaigns for the National AIDS Trust,

The tragedy is that there are still far too many governments not funding the treatment properly, and too many people with HIV who have not been informed of its benefits. Quack cures abound of course, all unproven, all cruelly deceiving, all a massive distraction from what we know genuinely works.

Also, the words of the Treatment Action Campaign, echo Cameron’s trust of science,

We recommend that you DO NOT put your trust in one of the numerous people and organisations offering cures and treatments for HIV/AIDS. Many people with HIV are taken advantage of by unscrupulous charlatans or well-intentioned but uninformed people. Learn the science and trust the science. HIV is a manageable chronic disease if you follow sound medical advice. It is deadly if you do not.

So, Jeanette Winterson has been telling us stories again. In the words of Lord Melvin Bragg when interviewing her on the South Bank Show,

You say ‘I’m telling stories – trust me’ – why should we?