The latest push to legalise assisted dying and the danger it represents

By Angela Craig

The latest stage in an unremitting campaign to permit assisted dying in UK law is represented by the Westminster parliament’s Health and Social Care Committee’s enquiry, established in December 2022 and currently taking oral submissions. In line with this, sections of the mainstream media have been once more featuring personal stories recounting unbearable illness and impairment in support of such a change in law. These individual accounts are compelling. They stir up universal human fears about vulnerability, dependence and death. These are intensified in our current times because it is commonly understood that health and social care systems are in crisis, the result of long-term lack of investment: public satisfaction in the NHS recently hit its lowest level (at 29 per cent) since 1983 (when this survey began, and the height of the Thatcher government).

But what articles focussing on abstract appeals for ‘choice’ or ‘the right to decide how I die’ obscure is that any such change in the law would take place within a definite social context. A change in the law would mean different things for different people: some people, particularly in situations of illness, of needing additional care on all sorts of levels, feeling they were or had been a ‘burden’ or were unvalued, would be more subject to pressure – conscious or unconscious – to ‘opt’ for a death. The specific, material, social relations into which a law permitting physician assisted suicide would enter are ones where all lives are not equal and are daily shown to be considered not equal by others.

This is demonstrated when disabled people face ‘Do Not Resuscitate’ mandates applied to them in hospital without consultation or consent. That happens because someone other than the patient – medical practitioners, say – assume that the person concerned has a life of such poor quality they would be better off dead. They may know nothing about the person’s life, only who they think they see in front of them.

Likewise, media pieces linked to the parliamentary enquiry talk about high levels of pain and about terminal illness as baselines for assisted dying. Leaving aside that these descriptors are well known to be subjective and not fixed, many disabled people live ongoing lives with such conditions. Such media reports eradicate that reality. Instead they suggest we all know what we mean by very high levels of pain or terminal illness, when we don’t. They imply opting for death is a reasonable response. A view that is all very well for an individual to hold, but as a public policy is very dangerous. It is dangerous because embedded in it is something people don’t want to think about and because it would impact on different people’s lives in very different ways.

How statistical data is gathered also reflects prejudices about disability. At the height of the covid pandemic attention was drawn to how Johnson’s daily news reports distinguished between the deaths of people with underlying conditions and other deaths, suggesting the former were less important. It was a suggestion grimly borne out in the patterns of deaths: between January and November 2020, the worst period for fatalities, disabled people represented 60 percent of deaths in England; disabled people with Downs were 36 times more likely to die than those in the general population.

Yet the reporting distinction made about covid was no one-off. Official data on life expectancy is collected in such a way that makes a distinction between ‘disability-free life expectancy’ and life expectancy otherwise. The former is ‘an estimate of the number of years lived without a self-reported long-lasting physical or mental health condition that limits daily activities.’ What does such a research category mean? Many disabled people live long, active lives, in education, work or not while having such ‘conditions’: and if they have difficulties they are often the outcome of social, physical and attitudinal barriers, not their impairments. What is being suggested, however, is something about the quality of life if one has, or doesn’t have, a disability. It may be that what is being got at is something to do with the patterns of prevalence of life-limiting illness, information that is ultimately important to highlight inequalities between classes and social groups. If so, the terminology is at least confused: a confusion felt in the life experience of disabled people, when, for example, illnesses or impairments are confused with disability.

The latter include socially determined factors which disable and which are not inevitable: they can get worse or better. If they get worse – as promised by last month’s budget – masses of disabled people will be driven further into poverty, social isolation, deprived of the resources needed to support ‘independent’, or chosen, lives, excluded from jobs through lack of reasonable adjustments and so on.

At present the material relations into which legalised assisted suicide would enter are ones of a grossly unequal capitalist society, with massive, and growing, inequalities of wealth, education, health and political power: in 2018-20, male life expectancy in the most deprived areas of England was nearly a decade lower than in the least deprived areas, and life expectancy for both women and men in the most deprived areas of England had been falling. Disabled people are three times as likely as non-disabled people to leave education with no qualifications; children with special education needs are being failed, as funding to meet provision withers. Unsurprisingly, given structural social exclusion, disabled people are more than three times as likely to report feeling lonely ‘often or always’ than non-disabled people. Like the death patterns from covid, these facts are not accidental. They are the result of conditions of life that rest on structural discrimination and inequality. This disability discrimination is also so commonplace it is often hardly noticed by those not directly affected.

It is into this context that Jeremy Hunt announced the decision to cut the benefit income to some of the poorest people in Britain. In his March budget Hunt announced the axing of the Work Capability Assessment, used to assess eligibility for specific work-related benefits. Many disabled people don’t access benefits but those who do are often among the poorest, as being disabled is expensive.

This cut is the latest in a long list of vicious attacks on the incomes of disabled people since 2010. Axing the WCA – in itself, a hated test but one that is a gateway to an employment related benefit, and it is that that is really being cut – is estimated by the Institute for Fiscal Studies to represent a loss of about £350 a month for up to one million people.

In its infamous post-banking crisis budget, the Coalition government in 2010 announced the decision to ensure 20 per cent fewer people received Disability Living Allowance as received it at that time. That was done by changing the assessment process. Their goal was brutally sought, as shown by the outcry over ATOS testing. This is basically the same assessment process (for an entirely different kind of benefit as it is not about capability for work but about additional disability related costs) that Hunt proposes to use instead of the WCA.

Other disability related benefits abolished or cut in the last few years include Employment Support Allowance, the severe disability element of Universal Credit, tax credits, Disability Living Allowance (now PIP). The Independent Living Fund, which supported many disabled people to live independently and escape institutional care, was ended in 2015. Although its funding was formally transferred to local authorities in reality it has been largely lost. That is part of the backdrop to savage post code lotteries and limits in support funding and to a situation now where some councils say they will require disabled people to transfer from their own homes to institutions in order to receive ‘care’ if that represents ‘better value’ for the council. Such policies represent a reversal of the advances made by disabled people in the last 50 years to escape from institutions.

Given all this it is hardly surprising that many disabled activists are concerned about the steady push to legalise assisted suicide, and call for support to live, not to die. Proponents of the legislation always say there would be safeguards. Yet even members of the parliamentary committee have voiced their concern about what they have seen in visits to other countries where assisted suicide is legal. What safeguards can there be against a social system structured on exploitation and oppression, and geared to discriminate, marginalise, devalue?

Image used: from Disability News Service