In 2015, I published a chapter in my second book on dementia, entitled ‘Living better with dementia: good practice and innovation for the future’, chapter 13 here. This contains a review of the cu
I am now proud to introduce my first ever podcast in a series which I have called ‘The Dementia Monologues’. It is on the subject of ‘dementia rights’.
The text of my podcast is below, in case you’d prefer to read it.
My name is Dr Shibley Rahman – and I am an experienced researcher, and a academic physician and academic lawyer by training.
This is the first of my series of podcasts which I’ve called “The Dementias Monologues”.
I hope you like them.
The law can be an ass, and its problem is that it represents only one source of rights.
As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.
Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.
But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.
People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.
The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty.
And views differ somewhat astonishingly.
Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’.
Reading something recently reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.
Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health.
In fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.
Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability.
Cataracts, or opacities of the lens in the eyes, are entirely peripheral. Monet’s change in colour styles can be attributed arguably to his development of cataracts.
Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.
Compare this on the other hand to a dementia which affects the higher order visual processing in the brain.
This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’.
But that is not the whole story.
“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about.
The last big thing, a ‘dementia friendly community’, I feel, was wrong at so many levels.
The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place.
At best it was merely patronising.
It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services.
The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau.
It is a CRITICAL way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.
The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.
“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”
In European rights convention law, a major instrument governing human right, article 5(1) of the European Convention on Human Rights provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law.
It is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”).
Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful.
In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.
This essential human right belongs to everyone – including, crucially, people living with dementia.
I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights.
It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’).
This is the practical heart of the issue.
For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”.
Lady Hale, giving the leading judgment, held that human rights are the same for everyone.
As Lady Hale put it (at paragraph 33): “The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”
In particular, the judgment undoubtedly “pushes to centre-stage the understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners recently.
The nuclear weapon for people with dementia I feel is the UNCRPD.
And the nuclear arsenal is completed by two incredibly influential advocates who “mean business”.
Prof Peter Mittler CBE and Kate Swaffer of Dementia Alliance International, a powerful advocacy group run by and run for people with dementia, ensured that the UNCRPD rose to the top of the agenda.
UNCRPD stands for the ‘United Nations Convention on Rights for People with Disabilities.”
There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales.
One of Articles of note is Article 12.
Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life.
Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity
Rights are not the only solution, however.
If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.
But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities.
As Lady Hale put it (at paragraph 33):
“The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”
I feel, particularly, that a rights based advocacy offers a mechanism to campaign as a social movement.
People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’.
Victimhood is sometimes unwittingly exacerbated by big corporate fundraisers – which is why we all need to be vigilant.
A rights based approach may help to reset the compass on a certain perception of dementia.
There’s nothing too small to make a difference.
“Anyone who doesn’t believe that small things don’t make a difference obviously has never slept with a mosquito.”
That’s from Malcolm Tucker.
Yes – for rights based advocacy, it’s important also to ‘sweat the small stuff’.