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Are we “all right” with rights in dementia? Is ‘doing rights’ sufficient?

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On 24 November 2015, long before the bandwagon left the station, I published my blogpost, “Rights-based approaches – what are they good for?”  The modern day equivalent in these days of social media, of chaining yourself to railings, is probably to come up with a catchy meme to reinforce the idea that human rights apply to people with dementia and care partners too. I, of course, use the word ‘bandwagon’ flippantly here – there is no doubt in my mind that none of this would have got the momentum it deserved if it were not for Kate Swaffer and Prof Peter Mittler CBE, a giant in the learning disability academic world, both living beyond a diagnosis of dementia. I should add that the work from Scotland and Ireland on rights-based approaches too have been phenomenal, far predating any work of mine.

For most of this weekend, I had the pleasure of listening to old lectures of the late Prof. Ronald Dworkin, the eminent jurisprudence professor of University College of London. Dworkin would simply take to the microphone, and speak without notes with immaculate detail, on the highly sophisticated details of the law. This reminded me to think about how the marketing of rights in dementia currently runs the risk of producing quite a bland meaningless campaign, a Skoda compared to the Jaguar of Dworkin and the Rolls Royce of HLA Hart at the University of Oxford (who awarded Dworkin a congratulatory first). It is my contention that people with dementia who are very vocally ‘doing rights’ have various degrees of understanding of these rights. I think this poses problems for whether the use of rights is to be of substance, and a meaningful debate about rights is now necessary.

Rights are essentially a matter of conviction. This has led Dworkin, and many of his contemporaries, to think about how they are to be best interpreted. Years before the EU Referendum in 2016 (Dworkin died in 2013), Dworkin used to discuss at great length about the ‘tyranny of the majority’, and whether it could be possible that all legal judgments could possibly have an objective understanding. When you think about how many varied reasons people give for voting ‘in’ or ‘out’ of the European Union, Dworkin’s words seem to me uniquely prescient. But Dworkin deserves credit for bringing legal philosophy within reaching distance of political philosophy for me, even if his ultimate claim that hard complex law have unique solutions (with people having varying degrees of success in finding these solutions) seems a bit far-fetched even from his ivory towers viewing bay. For all of us, law is a matter of interpretation. Dworkin objected to a narrative of law where the moral or political intention was ignored, such that it was reduced only to internal consistent rules made by a supreme power.

That law is a matter of interpretation with a geopolitical context is a critical move away from simply following a rule book, and conceding that a supreme power has an ability to judge whether someone’s behaviour has erred to an extent to merit a sanction. For someone to be ‘all right with rights’ posits an individualistic approach to human rights, and indeed all humans are deserving of universal, inalienable rights. What may seem to someone to be ‘alright with rights’ may mean someone else is ‘not alright with rights’. We know that care partners often have varying, different needs to individuals beyond a diagnosis of dementia. The justification of rights can only be seen in their appropriate context. For example, a person with dementia might be ‘alright’ with his right to privacy, but it is worth noting the particular power the right of this person with dementia might have over the State.

For Dworkin, these rights act as ‘trumps’ – and crucially can override the sum utility of the needs of the rest of society. They are thus anti-utilitarian. Rights are preferences which are given special weight. Dworkin employs this central idea in his essay “Taking Rights Seriously”:

“A right may be regarded as a trump, moreover, even though it might not trump the general good in cases of emergency: when the competing interests are grave and urgent, as they might be when large numbers of lives or the survival of a state is in question. Then, we might say, the trump gets trumped not by an ordinary justification but by a higher trump.” [Justice for Hedgehogs (Cambridge: Harvard University Press, 2011), 473].

The problem this poses for law makers including regulators is obvious. The law is ultimately defined by what is codified at least, and the Care Quality Commission might at one minute decide that covert CCTV surveillance is necessary for all care home residents. There is no right answer. Dworkin might argue that some people might find this morally objectionable, but for Dworkin the relationship between morality and law is crucial, to the extent of wondering whether rights can ever be truly objective. Societal values change. For example, Abraham Lincoln, held by many in high esteem, famously said that he would never sit closer than two places away from a ‘black man’.

Furthermore, we know both from domestic and International jurisprudence that there is conflict of laws. What happens if the rights of the person with dementia conflicts with the rights of the care partner? For all of us, there is an inherent conflict anyway between the rights of liberty and equality, for example. Rex Martin once pointed out that if the conflict in human rights issue is left unresolved, the status of liberal theorist John Rawls’ “basic rights as forming a stable system made up of mutually compatible elements” is uncertain (Martin: Rawls and Rights (1985). Therefore, arguably, no serious human rights theory may ignore that issue. In law, words do matter, which is why it is striking for people to say ‘I am’ rather ‘we are’ alright with rights. This immediately warrants the question of whether a group of people living beyond a diagnosis of dementia are sufficiently homogenous to use ‘rights’ for instruments for specified groups of people (e.g. the United Nations Convention on Rights of Persons with Disabilities).

Latterly, since the time of Cicero at least, groups of different people have upheld their rights to rail against oppression, but rights also are uniquely personal and open to interpretation. Arguably, not to put too fine a point on it, human rights are what makes us all “human”, deserving of dignity. Here dignitas (dignity) refers also to the dignity of human beings as human beings, not dependent on any particular additional status. In this use of dignity, man is contrasted with animals: ‘ … [i]t is vitally necessary for us to remember always how vastly superior is man’s nature to that of cattle and other animals; their only thought is for bodily satisfactions … . Man’s mind, on the contrary, is developed by study and reflection … . From this we may learn that sensual pleasure is wholly unworthy of the dignity of the human race. ’ (Cicero, De Officiis, I , at 30). If you think law is not open to personal interpretation, such as genocide, it is worth noting that different personal views exist on capital punishment and abortion, for example, and the rights therein.

Here, it is worth noting that there is a difference between law and seeking justice. There, arguably comes a time when the degree of injustice, oppression and discrimination reaches a point where fundamental human rights mean just that. The human rights lens reveals issues of discrimination and social exclusion that often underlie abuse against patients. This is critical, since abuses against groups such as people living with HIV, ethnic minorities, sexual and gender minorities, people who use drugs, and people with disabilities are especially rife in health settings. Dementia, sadly, is no exception. It is crucial therefore to help people with dementia and care partners to find meaning in human rights locally. You might feel that it is ‘all right’ for a terrorist suspect to be subjected to torture to save national security, and proportionate to do so, but you might feel fundamentally different about this if that suspect were you.

My own legal background urges me to feel it necessary to ‘proceed with extreme caution’ about the adoption of rights, highly dependent on meaning, and we currently have barely any literature on the cognition of people with dementia in relation to human rights. A real danger is that these rights get bastardised for marketing campaigns for fundraising or commissioning purposes, leaving behind any chance there might have been for a genuine authentic social movement. For me, the ‘turning point’ was Kate Swaffer’s speech at WHO in Geneva as CEO of Dementia Alliance International (link here).

The first principle of the 2003 UN Common Understanding (on a Human Rights-Based Approach to Development Co-operation) states that ‘All programmes of development co-operation, policies and technical assistance should further the realisation of human rights as laid down in the Universal Declaration of Human Rights and other international human rights instruments’.

The key word here is realisation – not just giving someone a pamphlet, a meme and a bandwagon.

I believe that it’s not simply “alright” to be seen to ‘do rights’.

 

 

@dr_shibley

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