THE story of Charlie Gard, who died last month, aged 11 months, is a tragedy (News, Paul Vallely, 28 July). It is a personal tragedy for Charlie’s parents, Chris Gard and Connie Yates, who have lived their worst nightmare. It is a tragic story of loss that many readers of this newspaper will have faced, either themselves or in their communities, or as clergy supporting the bereaved in the face of the most heartrending infant death.
But the story of Charlie Gard is also a parable of our age, weaving together three major themes that are reshaping our lives in dramatic ways: the loss of trust in institutions, the false promise of the market, and the extraordinary power of new media.
It has become a cliché to say that institutional trust is in crisis and that people no longer want to listen to experts. The EU referendum was the watershed for a large section of the public to say that they did not have confidence in the systems that organised their lives. The judiciary, who have been in the firing line in this case, were already branded the “enemies of the people” for requiring Parliament (another discredited institution) to vote on Brexit.
But this story has taken us to new depths of mistrust in public servants. Nigel Lawson once described the NHS as the closest thing the British have to a religion, and it was actual staff members from Great Ormond Street Hospital (GOSH) that Danny Boyle recruited to star in his Olympics Opening Ceremony in 2012, pushing bouncing children on hospital beds. But these same heroes have now been recast as villains, accused not of keeping Charlie alive but of being responsible for his death.
Lest the parallels with Brexit seem too contrived, we should note that Charlie’s parents’ spokesman, Alasdair Seton-Marsden, was the UKIP candidate for Chelsea and Fulham in this year’s General Election, and Nigel Farage recently told Fox News that he was “the only political figure in the UK who has been supporting those parents. . . And yet the establishment here has put up the shutters and said, no, turn off the life-support machine.”
SO, IF the parents of a very sick child cannot trust the judgements of experts in the medical establishment, to who else can they turn? An American doctor, Professor Michio Hirano, claimed that the experimental therapy that he was developing could offer Charlie some chance of improvement (a 10 per cent chance, we subsequently learned). GOSH accused him of retaining “a financial interest in some of the NBT compounds he proposed prescribing for Charlie”. Dr Hirano has denied that this is the case.
Nevertheless, in the marketised American health system, the interests of the patient is never the only interest at stake. There is commercial interest, and the hope sold to Charlie’s parents was the promise of the market that claims to empower us as consumers but has no interest in caring for us or managing our expectations.
This is the same delusion that underpins the false promise of the market in addressing so many wider social ills: the promise that a system of carbon trading can create a market mechanism for addressing climate change, the promise that free markets reduce poverty because a rising tide floats all boats, when all the evidence points to the contrary. Hope springs eternal when there are new commodities to be sold.
None of this would have been possible without the extraordinary capacities of new media to disseminate the campaign and win recruits for “Charlie’s Army” of supporters. Without even contacting Charlie’s parents, the right-wing campaigning website CitizenGo set up what has proved its most successful ever petition. Charlie’s case was designated a “global priority”: it was translated into seven languages on their site and gained particular traction in the US.
Open Democracy reports that, of the 127,000 tweets in English about Charlie over the last three-month period, only 10 per cent were from Twitter users in the UK, compared with 60 per cent from the United States — including, of course, President Trump.
IN THIS populist backlash against institutions, governments, elites, experts, and “the establishment”, Christian campaigners for the right to life have been prominent. And yet, I am sure that I am not the only Christian to feel that theological understandings of life and care, dignity, and death have been grossly distorted.
Through the promise of the market, the Christian understanding of the sanctity of the human person (which makes, for example, assisted dying unacceptable) is being redefined as the pursuit of medical/technological fantasies of the almost infinite deferral of death.
It is, ironically, a fusion of capitalist ideology with a reductionist human-rights discourse of the most secular kind. To accept painful but realistic medical judgements about the limits of treatment is not to be murdered by the State. It is, as most pastors know, the beginning of an acceptance of mortality that opens us to the supreme truth that all life begins and ends in God.
It is this belief that enables us to find some meaning and hope in the tragic story of Charlie Gard. And, as our world convulses through the dramatic transitions of institutions, markets, and new global media, perhaps the meaning of this whole parable is that we need to reconnect with what it means for our society to begin and end in God.
We need institutions that we can trust, because they live out a vocational purpose for the common good. We need markets that enable human flourishing, not peddle false hope for profit. And we need media that draw polarised people together, rather than feeding the anger and division of our times.
Canon James Walters is Chaplain to the London School of Economics and director of the LSE Faith Centre.