A Case of Simple Arithmetic

“Thomas Gradgrind, sir. With a rule and a pair of scales, and the multiplication table always in his pocket, ready to weigh and measure any parcel of human nature, and tell you exactly what it comes to. It is a mere question of figures. A case of simple arithmetic.” (Hard Times)

Falling by Matej Anzin

Reducing people to numbers, so as to decide what treatment they might receive, may give off the appearance of striving for objectivity and fairness. But the simplicity of the numbers belies the messy, human complexity of people's lived experiences sidelined by this approach. Here I'm arguing that it's only through being receptive to this complexity that we can ever hope to achieve real health justice for people with learning disabilities.

Making hard decisions easier, not fairer

Assigning numbers to people is of course an inherently dehumanising act. The Nazis knew this, prison wardens know it too. But it's also something that happens when well intentioned people find themselves faced with grim and difficult decisions regarding the allocation of scarce resources. In hospital boardrooms, for example, where NHS managers meet with experienced medical professionals, health economists and members of medical ethics committees. QALYs are counted, patients are ranked, scores assigned, in rooms of which we are usually, blissfully, ignorant. A necessary evil, perhaps. After all, compassion may be unlimited, but ventilators are not. I’m prepared to accept that sometimes a dispassionate, utilitarian approach is called for, otherwise deciding each time who gets the ventilator and who doesn’t would be emotional torture for some unfortunate soul. But right now, I am not convinced that this government has the individuals, or frankly the motivation, to ensure that everyone’s rights are fully represented in this process.

Who's in the room?

People with learning disabilities will always be unduly punished by a system that enumerates and ranks the populace in this way. Because to fully understand all the contributions they make, all the 'value' they add, requires an empathic understanding of humanity that such a system inevitably precludes. Those who live or work closely with disabled people understand this intuitively. In the government’s haste to deal with the current crisis, they are in danger being left out of the room entirely. As, of course, are the disabled people themselves. And the consequences of doing so are fast becoming apparent. This is just one of a number of marginalised groups finding themselves disproportionately hit by this pandemic. The virus itself doesn't discriminate - that bit's left to us.

The National Institute for Clinical Excellence (NICE) have recently published this scoring tool to help medical professionals decide who should access resources first (those with the lowest ‘frailty’ score and thus, supposedly, the highest chance of making 'best use' of them), and who should go to the back of the queue. Like anything that aspires to this level of deontological objectivity, you only have to do a little digging to uncover the unconscious biases and culturally loaded value judgements that lurk beneath the surface. To hear the voices that have been left out of the room. The ‘frailty’ score is to be determined by, amongst other things, looking at their ability to complete everyday tasks, like cooking, independently. This has become controversial (though unsurprising to anyone who has been working in this field for any amount of time) when it transpired that people with autism and learning disabilities would be unfairly (and unlawfully) discriminated against. After all, why would a severely autistic person be any less entitled to life-prolonging support just because they can’t operate a gas cooker?

Toby Young, a man whose voice does not go unheard

Toby Young, who for some reason never seems to have a problem getting invited into these rooms, has been touring the media as an 'expert' arguing that schools should be re-opened next week at the latest, on the grounds that we are “over-valuing the lives” of those who might die if we relax the current restrictions. He’s not alone in steering the national discussion in this direction. The BBC routinely talk in terms of ‘excess deaths’, subtracting from the death toll those who would have ‘died anyway within a short period of time’. It feels like at the moment we are being encouraged to collude in this idea of a public hierarchy of fatality, where some deaths matter more than others. It would be bad enough if these conversations were happening in the privacy of people's homes. But in this climate, on social media, in comments sections and opinion pieces of our right wing press, steered by the current crop of Tory ministers and right-wing newspapers, this does not bode well for people with learning disabilities.

Working towards meaningful health equity

Decisions around medical ethics should be taken by a broad team of professionals who have developed years of expertise in different areas. Medical Ethics Committees draw on experts from areas as diverse as moral philosophy, bioethics, law, even theology. It is only through this broad range of perspectives that we can see beyond the plain economics of the situation to develop a deeper and more nuanced ethical understanding, from different angles, of the decisions they face. Only with this breadth of experience would I trust such a team to take into consideration not just the voices that often go unheard, but also the aspects of our lives which cannot be reduced to numbers alone. Can I trust the government to respect and value such a broad coalition of experts, even when they contradict the opinions of their favoured economists? Have they now stopped having enough of experts?

Also, NICE guidelines state that a health economist should only be one cog in a mutli-faceted machine. And that any figures they release should be used as a guide to be used as part of a broader approach to medical decision making that includes what they call Social Value Judgements - the aspects of health equity that cannot be reduced so easily to numbers. For instance, NICE generally won't recommend investing in treatments if it ends up costing more than £30,000 to give someone an additional healthy year of life (QALY). However, for end of life treatment and rare diseases this can often go up to £50,000, or even £100,000. Why such flexibility? Because they acknowledge that there are unquantifiable factors in play when it comes to feelings of fairness and social justice. Like the feeling that you will be looked after in your old age. Or the feeling that you are in a society that values all human life equally. Where no-one is unfairly discriminated against because of factors entirely out of their control.

"Equity concerns: (1) that health services be distributed according to need, (2) that health service recipients not experience discrimination based on personal or social characteristics, and (3) that unfair health inequalities be reduced." (NICE’s Social Value Judgments about Equity in Health Care)

Toby Young, and everyone in the government who is listening to him, should have these Social Value Judgements in front of mind right now when they talk about NICE recommendations. Because if all they are thinking about is maximising value for money, they are in grave danger of minimising what it means to be human.

A history of exclusion

Leaving people with learning disabilities out of the room is not a new phenomenon. There is a long and troubled history of all governments, not just those on the far right, massively undervaluing those who live at the margins of society, especially if they are economically inactive.

A century after the US declared that “all men are created equal”, their first major federal immigration law (1882) sought to rank those seeking to enter the country so as to prohibit entry to those unable to cook or wash independently, or anyone "unable to take care of himself or herself without becoming a public charge”. Sound familiar? Later immigration officials were asked to exclude people with any ‘mental abnormality’, including people who were ‘simple’, or ‘feeble-minded’ but also who possessed such atrocious conditions as deafness, poor eyesight, and asthma.

Such attitudes are sadly not confined to the bad old days. Sweden had a sterilisation programme for women with disabilities that ran from the 1930s all the way until the 1970s. As recently as 1985, the Conservative MP for Bolton North East, Peter Thurnham, was arguing in the House of Commons that “to abort a handicapped foetus could well save the country £1million over the course of a lifetime.” There are lots more examples, but you get the picture.

Unconvincing

We must remain vigilant. Frankly, members of the current cabinet didn’t seem keen to attend to the needs of those with learning disabilities at the best of times. And right now, in their alpha male Dunkirk spirit COBRA crisis mode, these marginalised voices are being ignored more than ever. This is a government with aspirations of widespread immunity, but who can't or don't want to listen to those left grazing outside the main herd. We need to be hearing, and amplifying, the voices of those directly impacted by these decisions. For, as is so often the case, those who stand to lose the most are those rendered voiceless by a government that has never really sought to find a way to hear them.

Following a backlash, and legal threats, NICE have been forced to make a u-turn, and have said they will re-issue their guidelines for using ‘frailty scores’ to clarify that those with cognitive impairments should not be discriminated against. This is of course welcome. But this should not be seen as an accidental moment of carelessness. Instead, this should be seen as the latest episode in a dark global history of subjugation for those with learning disabilities. It is a history of exclusion, of eugenics, and of being given the losing scores in games, run by people in power, who don't even realise they're the ones making up all the rules.