This blog is the substance of a speech delivered to the Alzheimer Scotland conference a fortnight ago in Edinburgh and is published as part of World Alzheimer Awareness month and in recognition of world Alzheimer Day on September 21st.
Right across Scotland this morning in a child’s bedroom, in a classroom or in a playground the phrase “It isnae fair” will be heard on the lips of a face of pure innocence – usually accompanied by “It wisnae me” – Fairness even when we are children seems to be a concept with which we are instinctively familiar. And you would have hoped that if we know what being fair is all about from as it were our mother’s knee that as we mature and grow in age and life that fairness would be at the heart of our interactions with one another, would be etched into our body politic like the writing inside a stick of rock. But it clearly is not otherwise I wouldn’t be standing here about to say what I am about to say.
There isn’t a lot fair about dementia. I remember when my mother was diagnosed it was one of the first things, we all said – that a woman who had spent her life for others, who had been there for her children and neighbour, pouring out love with her cups of tea turned into tar, that the epitome of goodness should be diagnosed with this most hellish of conditions – it certainly wisnae fair. But like countless in this room and undeniably mainly through the compassion of my sister my mother got on with it and we all walked the journey of the disease towards its destination. But even in that patterning there seemed to me and to us all an intrinsic unfairness to the way she was treated – not by us or others who loved her, but by the system of health and social care. A system which made her management of her condition all the harder.
I ran an equality and human rights consultancy for over a decade and a half – in that time I witnessed and come across the most blatant forms of racial, sexual, gender and disability discrimination, even hatred. But in truth and this shames me when I see and consider the way in which as a society in Scotland, we have treated people with dementia and their allies – it is as nothing to the discriminatory treatment of those with dementia. Indeed, in a recent blog I made the statement that to live in Scotland today with dementia is to be marginalised, diminished, and ignored. And you can imagine the brickbats for that one. But I really meant and mean it. I wasn’t playing to the galleries. I was pleading for some sort of change.
Honestly – if it is not discrimination – what is the unequal treatment of people with dementia? It is three years since I and others listened to Henry McLeish the former First Minister at the launch of Alzheimer’s Scotland’s report and work on Fairness and the echoing absence of commitment, and the vacuous emptiness of rhetoric has left us with no change, not an iota of progress and that which was even promised has been pushed into the long grass of political commitments to be revisited when other priorities are attended to and other agendas fulfilled.
Let us be completely honest here and I will say this in the simplest of terms so that those with ears can hear and those too stubborn to answer can respond. If dementia is not primarily a health condition, then what is it?
Yes, dementia affects our social interaction with others, yes it affects our ability to live independently, yes it affects our ability to be a citizen in our communities – all characteristics of social care and what social care seeks to address – inclusion, participation, and voice.
But my mother’s primary needs – over and above all else – were health needs. Her brain and body were bulldozed by a condition that is first and foremost a clinical disease. So why the dickens did we have to fight and so many of you have to struggle to get a political, fiscal and societal response to dementia which is fair?
At the apex of all this is the fact that if you have health needs then your treatment and care is free at the point of delivery. Dementia not only overtakes our living and loving, but the way we have structured our response in this Scottish society means it consumes our resources, it eats up our cash and removes our assets. In very real terms and especially now when we are faced with cost of living and energy crises it impoverishes families and pushes many into a poverty of finance as well as a poverty of heart and soul. I know so many who are worrying today about how they will be able to pay for the cost of a loved one with dementia – whether in care home or in their own home. That should not be – it is obscene beyond description that we should as a society have created a divide between those who are ill, those with different long-term conditions. It is wholly unacceptable. It is not fair!
To treat someone as different – to behave in a manner which diminishes them, which deteriorates their health and wellbeing, is discrimination. As a society we are allowed, of course to treat people differently, but must only do so if the end is justifiable and provided that we do not treat someone unfairly because of their race or disability or sexual orientation and so on.
The experience of people with dementia is discriminatory – pure and simple. As a society we rightly call out and condemn the unequal treatment of someone who is Muslim or Jewish, or a minority ethnic person, or someone who is Gay or Trans – we even accept the necessity of hate legislation to call out the perpetrators of such abuse. But what do we do when it is our societal system which allows the abuse to continue against people with dementia – because people with dementia are discriminated against on the grounds of age and gender, as well as health condition and diagnosis? I have said before that the treatment of people living with dementia because they are primarily older and by a majority female is riven with blatant age and subtle gender discrimination. What we witness every day is a lack of political and social nerve, commitment, and intention.
Fundamentally this is a human rights issue, one of the major ones of our time and generation. Human rights are not just about the big macro things which impact on our society, they are not just about the way those outside our country are treated. Scotland is on the cusp of creating a new human rights legislation and we have a tremendous opportunity to do things differently and to truly walk the talk about human rights and dementia. For human rights to mean something more than simple words, they must come alive in the ordinariness of our loving and living. Where dementia is concerned human rights seem if not dead at least absent – it is time to resuscitate our commitment to making Scotland a human rights society, and to give new life to dementia strategies that don’t just pay lip service to human rights and think that by mentioning them the task is completed – we need to embed, enact and let our rights flourish. We need to act to make human rights real for dementia.
Fairness when you look at it in the dictionary has a range of meanings – yes it means to treat someone with impartiality, to be even handed and respectful but it also in its Old English derivation and in Old Scots has a sense of ‘beauty’ about it. Something which is fair is considered to be a thing of beauty. To stretch this somewhat there is something beauty about acting in a way which is equal, which considers that the treatment of individuals with dementia and their kin, should be about equality, free from bias and discrimination, of age or condition; that it should be about their human rights. There is something beautiful about equality – but what we have in the current system is not beauty but the ugliness of discrimination, of partiality and victimisation of a condition and those affected by it.
We can wait for others to wake up and finally listen, or we can together act, demonstrate, shout and campaign with even greater vigour. We have to recognise we have power, voice and ability beyond that which we know and that together we can and do make a difference. Human rights, equality, challenging discrimination does not happen on paper it happens in the hearts and minds of people; it happens when we work together to challenge the wrong. And this is all wrong. There is no alternative – for people like my mother now long gone, and for countess now living and those yet to struggle with dementia we have no alternative but to join with others to say ‘This isnae Fair’ and its time to stop!