I have written before on many occasions about mental health and older people, about the struggles of those who I have known to navigate the no-man’s land between support as an adult and the gaps in provision they meet when they suddenly become ‘old’; about how an understandable emphasis upon child and adolescent support can sometimes make those older adults with life enduring mental health conditions feel that their lack of priority is because of age, contribution and value.

There are many challenges facing older people and in a time of societal uncertainty, cost of living anxiety and a general economic downturn- it is especially hard for those who have mental health challenges to keep going and to navigate a world of uncertainty and confusion.

Monday 10^th October is World Mental Health Day, set by the World Federation for Mental Health, and it will as it always does provide people with an opportunity to focus on just how significant mental health is for us all. In the shadows of a global pandemic, it can sometimes feel that an emphasis on physiological health has overtaken the importance of holding in balance our focus on both the psychological, emotional and the physical. That’s certainly what John was reflecting to me recently in some of the communication I have been having with him.

John is in his 80s and he has been a user of mental health services for certainly most of his adult life. Recently he has been experiencing some very dark times and it has been hard for those who love him and who attempt to support him to get him on what he would himself describe as ‘an even keel’ rather than drowning in the torrents of his moods and moments. John said to me that the last few months have been very worrying indeed; what with Ukraine, talk of nuclear weapons, the worry about not having money, the fear of the cold, the fact that so many new faces are coming to support him because staff are leaving his homecare organisation – all of it is creating a whirring headache for John and in his words, ‘’It’s stripping hope off my bones.” But what he worries about and says so much is that he believes he needs to stop talking about how he is feeling; that he needs to pretend to be better and healthier than he is.

Sitting as I do on so many talking groups and committees where mental health comes up ever more frequently, I try to hold on to the stories and exchanges I have with people like John. Because it is easy to become desensitised to the very real fear, the cold fear, which some feel with their mental ill health. It is easy to forget that rather than becoming better or more settled, or attuned to managing episodes of mental ill health, that so many as they get older feel drained and simply exhausted and feel they cannot imagine growing older with such feelings and experiences dominating their living and loving. It is easy to forget that the stigma of mental health is still out there for so many folks maybe especially perhaps for an older generation. It is easy to forget that there are too many people who sit in silent pain and in rooms of lonely, abandoned hope because of a conviction that no one wants to hear their story, feel their pain or understand their distress.

So those of us who are able to listen and hear what is said, and see what is shown, and take on board what is felt, on this and every day we need to make sure that in all the noise of our communities that people like John can still feel their words are worthy of being uttered and that a plea for help will not be ignored. If we do that individually and collectively then perhaps, we will make progress as a community of the fragile.

The Scottish poet and biographer J.B.Pick puts this all beautifully in ‘Old Age Blues.’

‘I don’t know what I used to know.

I don’t say that it isn’t so,

I’ve just forgotten. That’s a blow.

When you know nothing, then you go.

 

The world keeps changing, things must grow;

You spend life learning, but it’s slow;

Perhaps my status isn’t quo.

I don’t know what I used to know.

 

Well, I must watch, not let it show,

Greet the morning, say ‘hello’;

When you know nothing, then you go.

I don’t know what I used to know.’

 

From : https://www.scottishpoetrylibrary.org.uk/poem/old-age-blues/

Donald Macaskill

 

 

 

This past week I have had the privilege of spending time with some of the most creative global thinkers and leaders in the space of aged care and older people’s rights by attending both European and Global Ageing meetings in Vienna. It has been invigorating to spend time sharing issues of mutual interest and concern, and recognising the solidarity of shared action, resolve and priority.  One of the best contributions in the events was from my colleague Katie Smith Sloan who is the Director of the Global Ageing Network as well as being the CEO of Leading Age, the foremost older people’s care and support membership body in the United States. Katie delivered a tremendous keynote speech with much insight, but one observation which struck home to me was when she noted that one of the reasons that we are witnessing such an increase in age discrimination across the world is that on the whole people, whether policy makers, politicians, or ordinary citizen, we are uncomfortable with recognising the reality that the world’s population is ageing.

That fear of ageing and the associated reluctance to recognise the reality of discrimination against older people, lies at the heart of the International Day of Older Persons which we celebrate and recognise today, the 1^{st of} October. This year the United Nations is marking the day by encouraging us to recognise the amazingly resilient contribution of older women.

They state in recognition of the way in which Covid 19 has exacerbated older person discrimination that:

“While older women continue to meaningfully contribute to their political, civil, economic, social and cultural lives; their contributions and experiences remain largely invisible and disregarded, limited by gendered disadvantages accumulated throughout the life course. The intersection between discrimination based on age and gender compounds new and existing inequalities, including negative stereotypes that combine ageism and sexism…

Recognizing the vital contributions of older women and promoting the inclusion of their voices, perspectives and needs are critical to creating meaningful policies to enhance a holistic response to local, national, and global challenges and catastrophes, UNIDOP 2022 is a call to action and opportunity aimed to embrace the voices of older women and showcase their resilience and contributions in society, while promoting policy dialogues to enhance the protection of older persons human rights and recognize their contributions to sustainable development.”

That call and encouragement should have a particular resonance for the care sector not only because the majority of people who receive social care supports are older women but because the majority of those who deliver that care and support, whether paid or unpaid, are themselves women and many of them living with the challenges of older age.

As the United Nations states the population of the world is ageing and doing so at a faster and increasing rate.

“Over the next three decades, the number of older persons worldwide is projected to more than double, reaching more than 1.5 billion persons in 2050. All regions will see an increase in the size of the older population between 2019 and 2050… the fastest increase is projected to take place in the least developed countries, where the number of persons aged 65 or over could rise from 37 million in 2019 to 120 million in 2050 (225%).”

In Scotland our population is also ageing.

“Those aged 65 and older grow from being 20 per cent of the population in 2022 to 32 per cent of the population in 2072. 9. These changes mean Scotland’s population is projected to be 7.6 years older on average in 2072 than in 2022, in comparison the UK population is set to be 6.1 years older over the same time period.” Trends-in-Scotlands-population-and-effects-on-the-economy-and-income-tax-August-2022.pdf (fiscalcommission.scot)

So, is it true that we are frightened of growing old both as individuals and as a society? Is that why we fear to be honest with the truth because we have swallowed the quest of seeking the illusive fountain of youthfulness? Indeed, most societies have in literature and art, in design and fashion portrayed the allure of youthfulness, equating beauty and creativity, vibrancy and life with youthfulness. It is maybe not surprising therefore that when older age is reflected upon it is with a language highlighting decline and deficit, diminishment, and decay. It is about what can no longer be done, the limitations of body and mind, the past is viewed with a yearnsomness and desire which is lost forever.

I do not think we will ever address all the systemic and political lack of priority, value and status around social care which I often reflect upon, without alongside it challenging the pervasive ageism that afflicts our societies, not just in Scotland but in so many countries.  We will never meet the challenge of support, care and health care without spinning on its axis our age presumption and bigotry. This will not simply be achieved by the occasional fashion magazine employing older age models, or advertising being more reflective of its consumers, or ageist language being more frequently challenged in daily discourse – all of which are important – ageism requires a societal shifting of the sands. We need in the present moment to witness the same degree of popular and civic campaigning which in the 1960s and 70s led to us addressing gender and sex-based discrimination. We need to reach a stage where ageist behaviours, assumptions and stereotypes are as unacceptable as those against an individual’s race or ethnicity or any individual characteristic. But we also need to become more comfortable with age, revolutionise our thinking with a dose of positivity and a celebration of the benefits of older age as well as some of the limitations. We have a long way to go before we can truly say we are an age positive society, one that not only gets up and offers a seat to those who are old but lets that population take control of the destination. It will perhaps come when people stop asking what can be achieved in older age and reflect rather on the creativity of a poet writing her best work, an artist painting in a new style, a mother reconciled to a daughter, a father holding a hard conversation for the first time in his life, someone being able to be honest with themselves about their identity – all actions and experiences I have witnessed in the lives of those in their nineties. Positive change can happen until the last breaths of life.

The late Scottish poet Elma Mitchell with her usual directness describes the ageing of a woman’s body but tantalisingly wonders does older age lie to youth or is youthfulness the delusion of deceit? A revolution of ageist presumption is required by the whole of society so that we learn to see beyond the chronology of years to recognise the value of individuality without condition and without the label of age to limit insight.

Good Old Days

My neck, where love ran

Just under the skin

Is now an old rickety ladder to the brain.

My breasts, a full delight

For child and man,

The setting

To carry rival jewels,

Dangle now untidy,

Unharvested, over-ripe.

The wishbone of my legs

Has changed their wishes’ destination,

Shin repeats to shin,

Welcome, death, you may come in.

I should be cheerless

As a crow in winter fields

When the light is going

But up here, at the top of the spine, behind the eyes,

Curtained a little, but not blind,

Sits a young and laughing mind

Wondering which part of me is telling lies.

Elma Mitchell

from The Human Cage (Peterloo Poets, 1979)

Good Old Days by Elma Mitchell – Scottish Poetry Library

The following blog was the substance of an address given to the Highland Senior Citizens Network in Inverness on the 14^th September.

I am just going to say a few words and will be using the title of your event Keeping it Real as the basis of some thoughts about what I think are the challenges but also the opportunities for aged care today and tomorrow.

People who know me well know that I am somewhat obsessed with dictionaries and the meaning of words or phrases – and so I looked up what ‘Keeping it real’ meant.

The phrase is described as being authentic, true to yourself. But what does it mean to be authentic and true to yourself?  Those were some of the thoughts I had a few weeks ago on a visit to Skye. As some of you might know my family roots are there and I was back staying with family when I discovered that the Highland Council Archive Centre in Portree – was in the final days of an exhibition which centred on the sometimes-violent disputes between crofters and their landlords in the late 19^th Century. It was a great wee exhibition which not only contained the local Court Register all the way back to the 1830s but also the relevant copy of the Napier Commission report which eventually brought about a settlement to what had been the Clearances. I had not physically seen either before – and so -partly checking to see how many distant relatives had fallen foul of the law (and there were a few) I rifled through both documents.

I discovered that a direct descendant gave one of the most moving testimonies to the Napier Commission. In it he described the injustice and maltreatment at the hands of those who sought control over him and his land. He spoke for the local people and was later described as an ‘agitator.’ As I read his moving testimony, I could almost hear the cadence and rhythm of his Gaelic voice – especially when he said that ‘It would be better for Glendale (the place) that Hamara (his township) would be a lake of water than in its present condition.’

Being authentic for him (and indeed for so many who gave emotional evidence to Napier) was about being honest and true, not fake or false, not influenced by the pressure of factor or landlords, but to speak despite threat with courage and conviction. I can only admire that sense of keeping it real. It was a speaking of truth to power. It was about being true to the innate values that were those of his people and place.

And today I feel as we gather and spend time thinking about the challenges facing social care delivery in the Highlands – I think we have also to remain true, to keep being authentic to what it is which is the essence of social care, what it is which lies at the heart of what we are as a community.

No one can deny that there are enormous pressures facing us in terms of the delivery of social care in an area like the Highlands. To some extent it has always been thus. But the last few years and months have stretched the fabric of care to almost the point of breaking. Covid was hard, emotional, and traumatic, unsettling and fracturing of relationships and trust. The energy crisis and the cost-of-living crisis we are currently living though has been for so many smaller providers of social care the last straw, the thing that has broken them. I hope the measures outlined by Westminster will properly address the gaps between funding need and resource availability. But we are also faced with ongoing challenges of how we respond to the workforce pressures that we know only too well, not helped by Brexit and backward migration policies, for it is a real struggle to recruit and retain the gifted women and men who are the lifeblood of what we do in an economy where the draws of hospitality, tourism and retail are so strong.

Someone asked me recently do I not get depressed or downtrodden by the realities of what I see and hear – and yes it would be a lie to say it is not challenging – but people like me have to be positive – because current challenge can and will be the platform for a response which will take us to a future which might be different from the one we envisaged but which will be of equal worth as long as we keep it real.

To deny the realities of financial restriction, of workforce, and geographical pressures would be dangerously naïve. But to allow them to be the end statement, to be the full stop of our dialogue, would be to give in and give up, and I do not recognise that as a characteristic of Highland authenticity and response.

Four things mark social care authenticity for me:

Firstly, for me being authentic about social care – keeping it real – is making sure we do not throw the baby out with the bath water. At times of fiscal and operational challenge it could and would be so easy to stop being adventurous and trying the new – to be innovative and to invest in the ingenuity of change and difference. The role of technology for instance has so much to offer social care provision in the Highlands – so this is the time to invest and be creative in how we use technology to help someone remain independent for as long as possible in their own place and to maintain their independence. How do we use technology for instance to give more authority and autonomy to frontline care workers, so that we respect their professionalism and skills? We may need to change our regulatory and oversight systems to enable more risk taking, less paperwork and audit for the sake of audit, and to start trusting the women and men who work at the careface.

Secondly for me being authentic and keeping social care real – means that we have to encourage and embed new models of delivering care and support at local level, not just on environmental sustainability grounds but for community cohesion and collective support. Increasingly I think we will have to ensure that we give people the tools of compassion and skill to support one another. We may in the future need to rely less on formal approaches. We need to invest in our communities so that they can become even more effective at delivering care at local level. But critically that needs a population and a people because ultimately buildings or organisations count for nothing unless you have people.

Thirdly for me keeping social care real, must be about the wider political and fiscal system owning up to the reality that social care is a profound economic driver and contributor to our economy not least for our rural and remote economy, and it is embarrassing that we have politicians and financiers who didn’t even include social care in the Ten-Year economic strategy which was recently published. It is time to value the women and men who work in and who use supports and care.

And lastly and maybe most importantly, keeping it real means that at a time of economic and operational challenge we must never lose the essence of social care – which is NOT about just about providing services and supports, not doing to and for someone, but allowing that person to flourish and grow, thrive, and achieve their full potential. Social care is not about maintenance it is about creativity, it is not about speaking for but enabling someone to discover their voice, it is never predictable and safe but always risk-filled and unchartered. Because social care is an enabler of life not existence- so we must urgently discover its power to prevent, to keep people independent and to help them enjoy being part of their local community as full citizens.

In the making of our tomorrows, we must never forget the ground on which we have built our culture and communities. My antecedent John Campbell complained to the Napier Commission that the land left to them by the greedy and corrupt factors was too peaty and so not able to grow anything – all he wanted – all the crofters of Skye for whom he spoke wanted – was land which was able to provide not riches unknown, but a living fulfilled.

Keeping it real for social care is first and foremost not about creating new models and systems, new structures, and edifices, even if we call them a National Care Service – but about doing what matters to the disabled crofter in a Skye glen; the youth struggling with mental health issues in Dingwall; the care home resident in Inverness fighting her dementia or the person living in Wick who has struggles with getting up in the morning.

And if we keep it real for them then we will have done all that we should.

Donald Macaskill

 

 

 

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 21^st.

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!

Donald Macaskill

One of the consequences of writing a weekly blog is that it comes round inexorably every week. It also means that you cannot really avoid the events and what has happened in the week that has passed. That said I had decided not to write this blog today up until a few moments ago, not least as there have been so many words, memories and thoughts shared about the death of Her Majesty the Queen. But having spoken to a few folks and having read so much on social media, the traditional press and watched so much television I have been struck by a few thoughts and want briefly to share them.

Social media can be especially cruel and notwithstanding the fact that there is a very real diversity of opinion around the role of the monarchy what has surprised and also saddened me is the frequency of comments relating to the fact that we should mourn less the death of someone who reached the age of 96 compared to someone who was younger. I come across this all the time, indeed virtually every day. The inevitability of working in the care sector around and with older people is that death in latter age and very old age is natural. Associated with that is an ageist societal assumption that because someone is older that their death is of less value or significance and more than that that the sense of loss and grief and emptiness on the part of those who are left should be by consequence less severe. Too often have I come across people in their twenties or thirties made to feel guilty that they are struggling with the loss of a grandparent in their nineties. Such a presumption makes a mockery of the reality that when we lose someone we love the longer the length of that relationship the deeper the well of emptiness and the depth of sadness we mine. Tears are no less strong, the pain of not seeing that familiar face, the echoing absence of presence is no less diminished and intense simply because someone has reached a very old age. They still had so much to give and share, so much to achieve and be, that their absence is as acute as the loss of someone much younger. I think it is simply wrong for so many today to point to a life well lived and a long and healthy one and to somehow impugn that the pain of grief should by consequence be dictated by the chronology of time

The second brief observation I want to make is that I have been surprised by how much I have been personally touched by the death of the Queen. I am by no means the only one who has mentioned this or spoken of the sense of being caught out by the sadness of the hour. One of the main reasons for this, I suspect, for me is that her death has brought to mind the memories of my own parents now long gone and of grandparents even longer away from me. I have reflected on the struggles they had and the death of the Queen as one of the last of a generation who shared their days of history through war and renewal, has resonated deeply. There is a sense for many of us that a touchstone, a cairn of memory and moment, the security of a presence that affirms familiarity and belonging has passed with the death of the Queen. We need I think as a whole society to acknowledge the sense of individual grief people are feeling at this moment, not just for their sense of losing the Queen, but for the fact that her death has opened up for many of us memories of those important to us who are now longer alive. It is rare for the death of someone else to bring home the rawness and questions of our own grief, and such feelings need to be held and supported by the love of those around us and by the awareness of the wider community. The death of the Queen has made many of us face up to our own work of grief and so many of us are ill equipped for that journey. We will in the days and weeks ahead be faced with a collective and personal grieving which will require communal understanding and love.

Lastly – and this may be somewhat ironic given you have read up to this point – there have been so many words written and said, television programmes and films aired about the life of the Queen over the last two days and this will doubtless continue up until the State Funeral. It is only right, I think, that as a society we will continue to focus on memory and loss, recollection and insight, but I really hope we get some space to be silent, to grieve and to be quiet, that we can all be given space simply to be on their own, apart from the commentary and comment, cocooned from the sounds and words, alone from the sights of flickering film and footage.

A funeral is a marker and a moment, a ritual of remembering which even for someone we only know as an anchor in our communal togetherness, needs to be a time and a day apart from all others. The funeral of the Queen will touch so many people in such diverse ways. I really hope that we all of us have the chance to find a space or place to nestle into our grieving for whomever we are grieving; I hope we can find a way in which we are able to be supported and loved in our hurting; I hope that those living in the face of a dying loved one find the ability to be present with that person; that those who have in these days lost someone important to them have the sense that their death is as valued as the mourned one society is focussing on;  because when all the words are spoken, all the cameras are shut off, all the people wander off to the ordinariness of living, when friends return to their own lives, the bereaved are left to the emptiness of absence, to a room unfilled with love… it is then we must be present to hold each other up and that is even harder if the days before that moment are as full as they have been.

 

 the other side of memory…

 I close my eyes and remember…

 

all those days that we have shared;

when you brought a bright spark

to cold and damp monotony;

when we collapsed in side-splitting laughter

about the nothing things of life;

when we listened to a piece of music

and tears sounded to its rhythm.

 

I close my eyes and remember…

 

all those faces that we have watched;

the fearful thrill of cradling life

as young new-born parents;

the certainty of adult doubt

as teenagers looked for answers;

the aching loss as the bone of our beginning

shrouded itself into the earth.

 

I close my eyes and remember…

 

all those places we have wandered;

the homes that we have furnished

with the love of our welcoming;

the journeys we have made

whose destination was beyond a horizon;

the hearts and lives we have changed

though we were blind to the knowing.

 

I close my eyes and remember…

 

all those graces we have been given;

the gentle glimpse of your hand,

open to share and bring comfort;

the smile which put at ease the stranger

and made them a friend for life;

the timbre of your content

as music filled a room;

the fragility of your strength,

from knowing Love in our midst.

 

I open my eyes and recognise…

 

that as the sun sets on this day,

as dusk scatters light

into the encroaching dark;

so somewhere,

on the other side of memory,

you are there.

 

And in that place beyond all sense

the sun is already shining,

the light is growing,

as the dawn of new beginning

aches its way through love’s pain

and loss’s mourning.

 

I open my eyes and see

that you and I are

both here and there,

both memory and future;

 

a life lived,

a love shared,

a beginning started,

a light rising,

over there

on the other side of memory.

 

Donald Macaskill

Like many people of my generation, I have always feared or at least been anxious about poverty. Memories of lack rather than emptiness have conditioned me as the first of my family to go to university to always have a desire to look over my shoulder to see the past story of family poverty coming up on the inside lane. Professionally I have seen and witnessed first-hand the demeaning and devastating effects of poverty. It comes in all sorts of sordid shapes; the inability to put food on the table which is nutritious and healthy; the indignity of having to borrow money or get the shopping on the ‘tick’; the rented room with the constant air of damp that infiltrates everything and leads to avoidable asthma; the parents struggling to get the ‘right’ Christmas present for their wee one so that they don’t become the object of bullying on their return to school; the holidays not experienced, the birthday parties not held; the continual drip drip of debt and borrowing; the pensioner whose savings are to bury them and who sits shivering in front of a one bar electric fire to say nothing of all the countless lives drowning in the false illusory escape of alcohol and drugs. I’ve seen them all and I’ve also seen the subtle poverty that might not even call itself such. The poverty that is one of limited ambition and silenced perspective – don’t seek to contribute or achieve because you went to the ‘wrong school’ have the ‘wrong’ accent or simply don’t wear the ‘right’ clothes and conduct yourself in the ‘right’ way. The poverty of “I know where you came from and nothing worthy has ever come from there.” Poverty of opportunity, access and aspiration can and is just as sapping of hope as poverty in its traditional sense.

It has therefore been with a degree of more than self-interest that I’ve been watching the media portrayal of the current cost of living challenges facing our society. I have become concerned and irritated by what I would call the glamorisation or acceptability of poverty and its effects. Now I accept there is and always has been a fine balance between stigmatising poverty and romanticising or validating it.

There is nothing new in this. For every example of modern ‘slum tourism’ there have been antecedents not least with the Victorians who were masters at the hypocrisy of poverty. On the one hand they held guided tours to allow the rich to ogle at the mentally ill of the Bedlam asylum and on the other they tried to address the horrors of child labour in factory and field. They painted paintings of elegiac beauty about Highlanders being cast out into the snow but perpetuated the brutal clearances of people in the name of mutton progress.

More recently social commentators have coined the phrase ‘poverty chic’ as a catchall phrase for the growing cultural tendency of using poverty as a vehicle for inspiration, idea or design. It is a phenomenon most commented upon in relation to American popular culture, but it also has its expressions closer to home. If you are interested in exploring these ideas further, I’d recommend the writing of the blogger Stacy Lee Kong. She has reviewed the hugely popular work of Justin Bieber and his album ‘Hold On’ and argues how it is illustrative of poverty chic. She concludes: (and I would suggest this resonates with some contemporary British song writing):

‘It’s clear what Bieber and his collaborator on these videos, director Colin Tilley, are trying to do here. Their goal is to make some unspecified statement about precarious work, affordable housing, the high cost of healthcare in America and/or poverty in general, which is an admirable desire, I guess. But in practice, these videos feature Bieber and a bunch of other actors pretending to be members of America’s downtrodden in order to tell a love story and to project some sort of nobility and honour onto “simple” lives. There’s no actual engagement with the systemic reasons why hard, dirty jobs are often the only option for young people in North America, or why so many young, and particularly racialized, women don’t have access to healthcare. And okay, maybe that’s a lot to ask of a music video. But without that context, what’s the final message of “Holy,” really? That people experiencing poverty and homelessness can depend on the kindness of strangers? That love overcomes all? These are glib platitudes, not reality.’

Of course, she is absolutely right. The glamorisation of poverty is a perversion of painful reality. When art and fashion curate poverty into a new aesthetic for clothing or interior design; when philosophies and belief systems elevate the poor as being somehow especially worthy or when creativity and genius are portrayed as the fruit of suffering and economic want then we have perversely lost our moral compass.

Bringing things back to the present – what has recently concerned me as along with others I have sought in blogs and in the media to highlight the dangers of energy and cost of living poverty – is the possibility of a new subtle version of poverty chic beginning to appear in our media. At times it smacks to me of the stench of bread and circuses.

So this past while I have begun to read many stories about how we can survive poverty or the challenges ahead. I read a Daily Telegraph story of the benefits of hunger and intermittent fasting appearing on the 16th August. Then the next day I came across a story in the Express about how mouldy food was perfectly okay to eat. Then just a few days ago on the 23rd August the Mirror carried an article entitled ‘I went shopping for Asda’s Just Essentials range and couldn’t believe what £10 got me’ – at least in its text it noted the risk of stigma and impact. Along the same lines we have had some articles stating that waking up with ice on the inside of the windows in winter as you were growing up wasn’t all that bad indeed it was character forming! Delusions which ignore the generations who grew up with respiratory conditions!

What is going on here? Am I being over-sensitive about the sudden growth in articles and commentary which might be arguably said to be asking us to accept the inevitability of less, the reality of restriction, of poorer food quality, greater want and poverty?

The acceptance of poverty as inevitable, the willingness to concede that it is a given that people will die because of an economic down turn or an energy crisis, the collaterising of life is a moral and political trap we would do well to call out and avoid where ever we see it.

Those who are living through and who have known poverty know it is an experience and pain not ultimately worthy of art or creativity, design or aesthetic, but rather demanding of action, solidarity, re-orientation and change. Don’t be deluded into thinking poverty is either romantic, glamorous or inevitable.

The brilliant poet Edwin Morgan who regular readers will know I much admire sums it up well. The air of poverty is one too raw to breathe or glamorise. It robs us and we should not let poverty chic suffocate the air of action and response.

GLASGOW SONNET i

A mean wind wanders through the backcourt trash.

Hackles on puddles rise, old mattresses

puff briefly and subside. Play-fortresses

of brick and bric-a-brac spill out some ash.

Four storeys have no windows left to smash,

but in the fifth a chipped sill buttresses

mother and daughter the last mistresses

of that black block condemned to stand, not crash.

Around them the cracks deepen, the rats crawl.

The kettle whimpers on a crazy hob. Roses of mould grow from ceiling to wall.

The man lies late since he has lost his job,

smokes on one elbow, letting his coughs fall

thinly into an air too poor to rob.

See https://www.scottishpoetrylibrary.org.uk/wp-content/uploads/2018/11/Glasgow-Sonnet-i-by-Edwin-Morgan.pdf?

Donald Macaskill

The following blog is based on a talk given on Monday 15^th August at the inaugural meeting of the GCVS Health and Social Care Network. SeeNetworks – Glasgow Council for the Voluntary Sector (gcvs.org.uk)

 

I am absolutely delighted and honoured to have been asked to speak at this the launch and opening event of the Glasgow Voluntary Sector Health and Social Care Network. As has been advertised I want to speak about why I think social care is so fundamentally important to both individual citizenship and wider society in Scotland; how the essence of the Feeley Report needs to be upheld and implemented; how a human rights and inclusion perspective needs to be at the heart of social care delivery, and lastly why social care needs to be seen as distinctive from, different to but yet intrinsically complementary to a robust health and wellbeing system.

I suspect that there will be little I say today which will come as novel or new because GCVS and other civil rights infused disability organisations have been stating much the same, championing and campaigning for what I am talking about for decades and decades.

In starting our conversation where better to start than me explaining the title of this talk. ‘Always the Bridesmaid and never the bride.’. First of all, I have to thank Lynn Williams who used the remark in a conversation we were having about the way in which social care seemed to be being ignored and sidelined in so many of the meetings and discussions she and I sometimes share. It felt then and still do now that the title was apt – but then I explored where the phrase came from.

The phrase first originated in a music tune, but it came to huge prominence when the mouthwash brand Listerine in 1924 launched a series of advertisements with the slogan “Often a bridesmaid, never a bride”. These ads portrayed a forlorn woman by the name ‘Edna’ or ‘Eleanor,’   who was unlucky in love and for reasons unknown to herself and was never being able to find love and settle down. The manufacturers marketed the mouthwash by insinuating that everyone around her, even her friends knew the real reason for her lack of success- Halitosis (bad breath). But since it’s an embarrassing subject to bring up, they wouldn’t tell her. This line of advertising sold millions of bottles of mouthwash increasing the company’s sales from $100,000 in 1921 to over $4,000,000 in 1927.

It just goes to show how a phrase can have such a power to convey a message – and whilst the way we use it today is significantly divorced from taking fun out of someone – it has a sense of never being the centre, the focus, special and valued – always playing runner up or the forgotten one. Never getting the main focus and prize. So is that really the case for social care in Scotland in 2022 – you bet it is!

But what is it I am meaning when I talk about social care. After all definitions are important and I am so often in meetings and at events – not least with those who comment about the sector but do not work in it or use its services and support – when they think they know what they are talking about but evidentially it soon becomes clear they do not – and yes that especially includes our politicians and media.

The common misunderstanding is that social care is a series of services which are done to and for a person. It is the tasks and functions that help someone or support them. In fact, in a lot of the recent debate – not least on the National Care Service – the word social has dropped out completely – we are to have Care Boards – but I want to argue that care is not the same as social care and social care is more than simply care (especially if that care is narrowly understood and defined)

I am quite sure if we did a straw poll of what social care was for most of this audience it would not primarily be about services, and tasks and functions – but would be much broader.

For me social care is about connection and relationship, about belonging and being, independence and community. It is for me something which is profoundly about enabling people to be and become fully human to realise their potential and to flourish until the last gasps of living and loving.

There are loads of definitions of social care – the one I often use is this one – it has a forward dynamic – it is not about doing to or for – but enabling, empowering, – it is not about bringing order into the messiness of living but allowing that life to mess up the order and bring creativity, vibrancy, energy, and vitality to life.

‘The enabling of those who require support or care to achieve their full citizenship as independent and autonomous individuals. It involves the fostering of contribution, the achievement of potential, the nurturing of belonging to enable the individual person to flourish.’

That is why social care is so important – it is social – it is connectedness, citizenship, discovering abilities and celebrating diversity. We need to re-discover the social in social care – and tell policy makers and politicians to take their hands off something which will long outlive them and of which they know not.

Social care is therefore for me a human rights issue and a human right in itself.

More of that in a minute – but one of the problems in the ‘Always a bridesmaid’ scenario is that people – even those who should – simply do not recognise and value the massive role and contribution which social care is making every day to our society.

The work of many not least the SSSC has highlighted the economic benefit of social care to the Scottish economy – but that is often lost – even our latest national plan for economy and business Does NOT mention social care -a shocking dereliction of ability and priority and an even greater marginalising of the value of the sector.

Even just last year another report – this time commissioned by Enable showed that far from being a burden on public finances, the sector contributes more than £5.1 billion Gross Value Added (GVA) to the country’s economy and supports some 300,000 jobs.

That report demonstrated that social care’s direct economic impact is more than £3.3bn GVA and its indirect economic impact, through supply chains and supporting industries, contributes £800 million. The impact of the sector from employees spending their wages generates £1.1bn.

 

So, given all this – and the shocking failure of our economic leaders to recognise social care and its prospect as an economic driver and contributor – much more than many other valued sectors – what is going on here you might well ask? … you could ask a lot about why it is that social care is marginalised – always the bridesmaid and never the bride –

… but I hardly need to articulate the reasons to this audience – is it not the same reasons which in ancient times saw the ban on anything other than perfection in Greco-Roman sculpture and art? Is it not the same attitudes and reasons which saw throughout history the diminishing of those who were different because of disability, mental health challenges or health needs – a diminishment which still goes on to this very day? Is it not the age-old desire to have disability – out of sight and out of mind – shut off from the mainstream, prioritised as other? Is it not the same source of behaviour which has created a cult of youth and beauty and which even today dismisses older age as having had its day, finished its contribution, not worthy of voice or listening to? Is it not the same attitudes which have never treated dementia as a disease of equal health impact such as cancer or diabetes because primarily it impacts upon the lives of women and of those who are old.

The answer is of course discrimination and inequality, the othering of those who we can label, the dismissing of value and voice, of contribution and importance. It is as old as the heavens and as perverse as it has always been.

That is why we who use, access, work in and are involved in social care supports have to find a voice to challenge the status quo – to say enough is enough – we will not be marginalised or silenced – this is our lives and livelihoods – if we change and do things better, seek to be better, to reshape and reform then we can do so much better; we can then celebrate social care as an essential component to civic life and Scotland.

Now both those elements – a broad inclusive definition of social care and a sense that social care had the potential to be an economic driver and contributor to the whole economy can be found richly running through the Feeley Report

I have to confess to something of a Damascus Road conversion to the work of the IRASC – I was a cautious critic at the start because I thought that the task Derek and others were set was impossible to achieve within the time frame given and that they would not fully and properly engage and consult and involve in anything other than a tokenistic manner. It is to the immense credit of Derek Feeley and the whole tram that what resulted was such a dramatically positive and at times visionary report.  It was a report set at a particular time, but which managed to capture the spirit of the hour, to offer pragmatic solution and to describe reality warts and all.

 

The problem is that today or at least for me the Feeley report feels like a dream slowly disappearing into the distance, having been touched by the cold abnorming of political reality and opportunistic pragmatism.

Feeley rightly emphasised the contributive economic and societal nature of a social care system which worked well and enabled the flourishing of all within community. He rightly addressed the implementation gap – or for me the chasm between aspiration and the legislative potential of things such as Self-directed Support which could and should and can still be transformative and revolutionary – he described in words of your making and shaping the practice reality for people who receive care support. Why is it that everything feels like a battle and grind to achieve what should be the right of those who are supported?

This is not the place to go into detail on the NCS – but oh I groan at the gap between vision and reality, between energy of Feeley and the lethargic texts and framing we are now presented with. There is such a slew of despond when by a thousand deaths of bureaucratic implementation, the whisper of originality and the spark of excitement is silenced and snuffed out.

There is still time to shape and influence to try to keep the jewel at the heart and not just create a mini-NHS with the failings its parents are unwilling or unable to recognize such is the adoration of the original.

But you see I am more and more convinced that social care is too important to be left to the politicians and professional policy makers. Indeed, social care is more than the National Care Service – it is more than a service or system, a model or framework – it is about lives and people, about dreams and relationships, about freeing the person to become and the community to flourish – the NCS may enable that, but social care is much much more …

Social care cannot be left to be the plaything of politician and commentator, the disinterested only thinking about a vote or a story, or a sale or a system-  It is ours – those who use and have used, those who are family and informal carers, the frontline workforce in projects and care home, homecare and addiction services, mental health recovery and day services – and so many other places where the SOCIAL matters and takes place and shape.

It is not time to be silent during consultation; it is time to press upon our elected representatives that they cannot get away with half-baked, half costed and half resourced plans and ideas – this is our life, and it will shape our future community – we cannot get it wrong.

The title of this talk is ‘Always the bridesmaid never the bride’ – it is time for social care to take centerstage – not as the bridesmaid to the NHS bride, not as the handmaiden, the Cinderella, the forgotten one, the one who gets the crumbs from the NHS table. We must call out the lazy political speak and mantra which sees the world through NHS eyes, which perceives the need of social care by its impact on the NHS – such as classically the debate about delayed discharge. Such myopic obsession with the NHS is damaging, dangerous and obscenely short-sighted.

Living well in community, independent and with a life that is flourishing is just as important and worthy of resource, political attention, and popular valuing, as the emergency and acute and dramatic success of hospital, GP, nurse, and clinical professional.  They are symbiotic partners of a whole fount of wellbeing.

It is the people on this call and beyond who have the power to advance, to rescue and to advocate for social care support. It is time to make the system human rather than transactional. We cannot continue to have a system which is built around the cult of maintenance – keep people as they are, where they are, who they are – that is the complete opposite of social care which is about enabling the person to change and grow, to flourish and renew, to adventure and discover. Independence is too important for it to become a matter of constitutional debate – independence is first and foremost, most, and best – the enabling of a person to be who they are and to grow to their full potential often in relationship to others.

For me we have a very real potential to rescue the human at the heart of social care – to nourish the social within services and to discover the breadth and depth of a mature modern social care world. That potential is rooted in recognising that social care is, as I stated above, a profound human rights issue.

I have written – at some length – about why I think we need to seize the opportunity of Scotland creating a Human Rights Act – and to become the first nation to explicitly describe what the rights are engaged when we seek to incorporate the International Covenant on Economic involved in the Economic, Social and Cultural Rights into Scottish law – now I know the right to health is critical within that.  But I want us to go further and to make explicit – even with the likelihood of progressive realisation – the human right to palliative care, the human right to bereavement support and explicitly and most fundamentally the human right to social care.

The right to health has been interpreted more than just the right to physical and physiological health – in case law it has included emotional and psychological health, but I really hope we can go broader than a loose definition of wellbeing to say that social care – regardless of age – is distinctive, it enables the fulness of life and the achievement of other fundamental human rights and without it being protected as a distinct right then others are diminished. Social care is a human right – it is my right to flourish and thrive, to be independent, to have voice – this is not about attending to my health needs but meeting my social care needs. And in that sense social care can only be judged as a human right realised through the United Nations human right test principles of availability, accessibility, acceptability, quality, participation, and accountability

It is not enough to have a new National Social Care Service, or another set of legal obligations, you become the bride when you are treated as valued and wanted, centre-stage in economic and societal priority, considered as worthy of focus and attention, adequately resourced and prioritised, and for me social care to be human has to be seen as a human right with all the protection that affords, not just a bridesmaid to the NHS bride.

Last week I wrote in my blog about the potentially devastating impact of energy cost increases on the care home and homecare sector in Scotland. In response to that several people got in touch to say that there was a dimension of the cost of living and energy increases that was rarely talked about in the mainstream media – namely the impact on older people who live on their own and on their health and wellbeing.

One correspondent put it fairly bluntly when she wrote:

“I feel as if what is happening around me is something over which I have no control. I am on a fixed pension which was a struggle at the best of times but allowed me if I saved to get some things for the grandkids. Now I am either going to have to cut off the heating for most of the winter or not be able to give my grandchildren what I want to. I am going to have to choose between love and heat.”

Despite my attempt to reassure and suggest what I think is a priority and which her grandchildren would consider a priority – i.e., to heat and be warm – I am ashamed that in 2022 an older woman who has given so much to her community and society, and to her family should be having to contemplate making such a decision.

But her choice describes the situation for countless thousands across Scotland today. Unlike those in work who can argue for an increase in their salaries to match the spiralling inflationary costs; or who can potentially work more in order to bridge the gaps – the vast majority of older Scots are on fixed incomes and pensions which at the moment are restricted. They are in a very real and costly Catch 22. The consequences of some of the choices they are making now and will make in the autumn and winter are devastating and, in some instances, might be deadly.

Professor Linda Bauld,  a leading academic at Edinburgh University and who has become a familiar face during Covid, yesterday appeared in the Herald saying that the steep increases in prices could spark a public health emergency with a rise in deaths.

She is quoted saying:

“We know from history that when people lack access to basic resources including energy and food there are health implications… Cold, damp housing exacerbates respiratory conditions for adults and children and results in worsening of symptoms for a range of chronic conditions.

“Not having enough money for transport means people can’t travel to appointments with health services or to collect prescriptions.”

There is nothing new in this reality, nothing new in the fact that older people are more vulnerable to winter deaths because of rising respiratory conditions; nothing new in the fact that more heart attacks occur after a cold spell and nothing new in the poverty faced by older Scots. What does not seem to be new is any political response regardless of where that might come from.

That is not to dismiss some of the interventions which have occurred, and I would encourage anyone who knows any older person to be aware that we are in the last week of being able to apply for additional assistance. People living on a low State Pension should check their eligibility for Pension Credit and apply ahead of next week’s cut off point on Thursday as it could mean an extra £650 of financial support which could help with rising energy bills. There are more details available from Age Scotland and others. But sadly, I suspect all the interventions to date will not prevent the major health emergency we are about to face as a whole society – unless action is taken  and all this said in a week evidencing yet more massive energy producer profits.

In an earlier study from Age UK it was stated that 220,000 older households in Scotland will have insufficient income to cover their essential spending this year. They estimate that the poorest older households in Scotland will need to drastically up the percentage of their net income spent on essential goods and services from 70% in 2021-22 to 87% in 2022-23 due to higher costs of living.

Every day we seem to be hearing yet more negative news with little action or comment from both the Scottish and UK Governments. It is one thing to respond to an emergency and have fault lines found in the response, it is quite another to walk into a nightmare fully awake and to fail to take action which could save lives.

Therefore, it is not only our care homes and homecare services which risk collapse and which will result in inevitable deaths in the coming weeks and months, but people at home on their own over the next few months who will be asked to make life and death decisions, and for many the wrong choice will inevitably follow, and for countless others there will be no choice at all.

Donald Macaskill