This past week I had the pleasure of spending some time with social care colleagues from the rest of the United Kingdom and Ireland. The Five Nations Care Forum is now in its second decade and is an opportunity for the leaders of social care representatives’ bodies to come together twice a year to share insights, experiences, suggestions and support on issues of the day. There is so much that unites the countries regardless of diverse governmental, operational and regulatory systems.

One of the constant themes and words used during our exchanges this week was that of ‘confidence.’ There was a sense that one of the most significant risks to the delivery of social care support both in residential and nursing care homes, and in care at home and housing support was the lack of confidence which existed. There was a lack of confidence in the focus, resolve and ability of our political leadership to lead us out of many of the current challenges. There was a lack of confidence that the role, contribution, and professionalism of our social care support workforce was sufficiently valued and even understood. There was a lack of confidence felt by organisations unwilling to invest, plan and innovate for the future when so many things were uncertain and up in the air. We concluded our considerations by issuing a media statement arguing that now is the time to globally articulate a new vision, a fresh direction and a new passion for social care and that in the coming months we would seek to work to do so. http://www.fivenationscareforum.com/going-global/

Confidence is an interesting phenomenon, sometimes an elusive experience. As the Chambers dictionary states:

‘“etymologically, confidence comes from Latin, specifically the noun confīdentia from the verb confīdere “to confide.”… the verb fīdere means “to trust.” The related Latin noun fidēs “trust” is the ultimate source of the English word faith.”

Do we have trust and faith that the future of social care is one that we can consider to be safe and secure? Confidence needs the energy of faith to feed it and nurture hope into reality. For those who use social care supports, who work in the sectors, and who care for its priority and aims, there is no alternative but to continue to struggle to increase confidence and to raise our voices above the din of disinterested silence.

I ended my week with two critical meetings of providers of care home and homecare provision in Scotland. These are dark and challenging times and the lack of focus and urgency by so many with the ability to make decisions which can bring real change is frustrating and depressing. As key national discussions are ongoing, I cannot comment at this stage but anyone working in social care in Scotland knows that the next few days and weeks are critical to the survival of the sector and that we require political leadership to work in partnership to achieve positive outcomes for all.

But one thing I am convinced of is that regardless of short-term outcomes, there is a passion, a fire, a resolve in the belly of the body social care, to renew itself, to be heard, to advocate for those with no voice, to reform and reshape the way we care and support, to no longer be the pliant child who receives the scraps of attention and focus, but to shout aloud about the glorious, wonder which is a life transformed by the care and compassion which good social care delivers and promises.

In that I can find no better expression than in the glorious words of one of my all-time favourites Maya Angelou. She wrote this about her own sassy sexuality and self – but I can just as much see these words as speaking for social care today. We are not, we dare not lose confidence, social care support in Scotland shall rise.

Still I Rise

You may write me down in history

With your bitter, twisted lies,

You may trod me in the very dirt

But still, like dust, I’ll rise.

 

Does my sassiness upset you?

Why are you beset with gloom?

’Cause I walk like I’ve got oil wells

Pumping in my living room.

 

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll rise.

 

Did you want to see me broken?

Bowed head and lowered eyes?

Shoulders falling down like teardrops,

Weakened by my soulful cries?

 

Does my haughtiness offend you?

Don’t you take it awful hard

’Cause I laugh like I’ve got gold mines

Diggin’ in my own backyard.

 

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.

 

Does my sexiness upset you?

Does it come as a surprise

That I dance like I’ve got diamonds

At the meeting of my thighs?

 

Out of the huts of history’s shame

I rise

Up from a past that’s rooted in pain

I rise

I’m a black ocean, leaping and wide,

Welling and swelling I bear in the tide.

 

Leaving behind nights of terror and fear

I rise

Into a daybreak that’s wondrously clear

I rise

Bringing the gifts that my ancestors gave,

I am the dream and the hope of the slave.

I rise

I rise

I rise.

Maya Angelou, “Still I Rise” from And Still I Rise: A Book of Poems.  Copyright © 1978 by Maya Angelou.  Used by permission of Random House, an imprint and division of Penguin Random House LLC. All rights reserved.

Source: The Complete Collected Poems of Maya Angelou (1994)

Still I Rise by Maya Angelou | Poetry Foundation

Donald Macaskill

 

This week’s blog is partly based on a talk given at the Care Roadshow, Hampden Park on Tuesday 18^th April.

Dignity has always been an important concept and word for me. In part because having worked in the equality and human rights field it is one of the bedrocks upon which our modern ethical, moral, and legal frameworks have been built. Indeed, the opening words of the first Article of the United Nations Declaration of Human Rights declares:

All human beings are born free and equal in dignity and rights.

There are essays and books, PhDs and poems, written about what dignity means both legally, philosophically and in practice. Indeed, there is an important current debate about whether human rights as a whole and dignity specifically are indeed inherent and part of our DNA as human beings or if they only really become meaningful with our belonging to a State as citizens which enables their fulfilment and realisation. In truth we know that simply saying something does not make it true. Without the power of a State our rights are meaningless – and indeed as too many of us know even with the so-called validation of a Government our human rights can be but paper aspirations.

But I think there is something different about dignity – my belonging to a community may bestow me with human rights but if I lose citizenship or association for whatever reason – I do not I would contend lose my right to be treated with dignity.

Now however fascinating the philosophical debates might be I am not going to go there. I am going to assume that part of our humanity is our human dignity and the right to have that dignity upheld, protected, furthered and nurtured.

But what is this dignity? What does dignity mean to me and perhaps more importantly what should it mean in the context of social care and support.

The dictionary is clear and emphatic. Dignity is defined as

‘the state or quality of being worthy of honour or respect.’

And then there are a sample of other definitions. In fact, despite its centrality in the delivery of person-led social care there is no consistent universally agreed definition. I haven’t got a problem with that because the very nature of dignity and rights, should be about the dynamic of undefinable human relationships meaning that in different contexts, for diverse peoples, and in multiple dynamics dignity will mean different things. It truly is in the perspective of the beholder and the community in which they are living and relating. So it is that one group the Social Care Institute for Excellence (SCIE) states:

“Dignity in care means providing care that supports the self-respect of the person, recognising their capacities and ambitions, and does nothing to undermine it.

One homecare organisation, GoodOaks Homecare says:

“Giving people space and time to do things at their own pace. Giving people a choice over their care options and asking their preferences for care. Giving people autonomy over their lives – from the choice of what to wear, to what to eat and what to do. Making sure someone is not in pain.”

There are lots of common threads in most of the definitions you will come across– and I think they are each of them true up to a point. A few years ago I did an exercise in which I asked a group of participants two questions: What makes you feel that you belong, that you matter? Then I asked them if someone is treating you with dignity what does it look or feel like. The two lists were remarkably similar and both suggest a dynamic positivism to what dignity meant – it wasn’t something to be taken off a shelf – it was personal, active, participative and owned.

There are I think some key characteristics of dignity which appear in all the definitions and in what people themselves say. The group I worked with both described what it felt like and what it left them with a sense of:

• I was heard and not just listened to.
• They gave me time to talk and tell.
• They treated me as an individual not as another case.
• They spent time and got to know me.
• They came up with really practical steps.
• They believed what I was saying.
• Nothing was too much for them.
• I felt as if I had known them for years.
• They allowed me to make mistakes.

So, dignity in care – in social care – is a really life-affirming experience that places the person not in the centre but in control – it is a dynamic of relationship which results in an altered experience for both supported person and carer.

Over the years I have increasingly come to know that dignity is at the heart of social care and support.  But dignity does not just happen; dignified and equal treatment isn’t an accidental occurrence but a determined action. Dignity has a price and a cost, and it is something that demands prioritisation, planning and focus for it to become the lived experience and encountered reality of citizens. The question therefore has to be asked, and continually articulated, is whether or not in contemporary Scotland the way in which social care and support is delivered meets the dignity standards – and whether given those come with a cost attached we have as a society been and are prepared to pay the price for dignity?

Three brief reflections to get a sense of the price of dignity today.

Actual delivery and value.

I have often commented in the weeks that have preceded this blog that I fear there is a lack of adequate appreciation of the value and contribution of social care support. One reason is that we continue to use the perspective of the NHS and clinical care as the means by which we assess and articulate the value of social care. That is a fatal error because it fails to recognise the potential of social care and its distinctiveness. Perhaps one of the reasons that integration has so often failed in some parts of Scotland is that key stakeholders have failed to understand the contribution, voice and distinctiveness of those who are not part of their world – be it acute/secondary NHS or social care.

For me you cannot work alongside another unless you understand or at least attempt to know their language, their contribution, skills and assets. Social care and support is about enabling independence, choice and control, autonomy and voice. Also, in no small manner the social is what really matters here – it is not just care or support on their own it is social care -connection, relatedness, community, citizenship – all matter. Coincidentally the minds behind the Social Work (Scotland) Act of 1968 were of similar orientation, rooting a communitarian focussed idea of the social at the heart of care support. Social care is not solely about supporting an individual it is about supporting their connectedness to citizenship and their ownership of place in relation to others.

I do not think anyone can understand modern social care and support without also being aware of the civil rights context most especially of the disability rights movement in the 1960s through to the 1990s.  Whenever I hear commentators say we should return to health running everything or turn everything over to the NHS I quake – for years people literally fought to get out of the clutches of the healthcare system, to escape a health oriented clinical model and approach to disability, lifelong conditions, and older age; to shut down the institutions and asylums, to move people out of geriatric wards and units.

The last thing we need is a return to a health-oriented approach to living independently. Social care is not health care. Dignity is at risk if we fail to protect the distinctiveness of social care. It is a price not worth paying even if it seems an illusory answer.

Workforce

In his first policy announcement to the Scottish Parliament on Tuesday last the former Cabinet Secretary for Health and Social Care and now First Minister Humza Yousaf intimated his desire to move towards paying frontline social care staff (though specifically he only mentioned staff in adult services) the £12 an hour which organisations like my own have been campaigning as the starting point for a just, equitable pay award. There was no timetable although I am led to believe that this is being urgently developed. Dependent upon the illusive timetable this is a step in the right direction. Whether it is in time to rescue the faltering and disintegrating social care sector needs yet to be determined. Sadly, in the last few weeks, as NHS colleagues are being rewarded over 19% more for doing the same work of care support compared to their social care colleagues, there has been a growing number opting to leave the social care sector, leaving us even more critically unstable and at risk. The failure to properly value All social care staff in the same measure as colleagues in the NHS has been a massive politically opportunistic error. It will unless urgently remedied fracture perhaps irreparably the social care and health cohesion of our communities. What is the price of dignity for our social care staff? Because at this juncture of time it would appear it is one that our political leadership is either very slow to pay or worse is simply not willing to pay. Even if we were to start paying workers £12 an hour tomorrow there would still be an unjustifiable gap of unequal treatment.

Lack of focus on those who require social care especially older people and their carers.

Lastly what of those who are the folks who receive social care and support, who use our care homes and are supported at home, our day services and opportunities, our housing support and sheltered accommodation. What of the tens of thousands of family and unpaid carers who have borne the burden of our community for so so long with but passing regard and recognition, and precious little support? This has been an especially hard winter and we are by no means out of its throes yet. Too many have sat in silenced hunger and in crippling cold for fear of debt and impoverishment. Too many have felt the dignity of compassion absent from their living. The price of dignity has been found to be not worth paying in so many ways not least as local authorities have chosen to make swingeing cuts to community-based services in order to balance their budgets, and I fear disproportionately these have impacted the older citizen in many communities.

Faced with what has been for so many perhaps the hardest winter to live as an older person in Scotland in recent times, it was unbelievable to witness the failure of our new Government to continue to support a distinctive Government post of Minister for Older People. Some have questioned the value of the role, but I would suggest that regardless of the postholder that having someone at the table of decision-making who ‘should’ be advocating for older persons is critical. That is one reason I and others have enthusiastically supported the campaign launched by Age Scotland.

What is the price of dignity? From eligibility criteria which are so high you need to be close to death to the failure to recognise the distinctive and unique mental health challenges faced by older people; from budget cuts at the heart of older person services and a lack of prioritising of older person issues – it would appear a price again too high to pay.

The Portuguese Nobel laureate and writer José Saramago once opined that:

“Dignity has no price, when someone starts making small concessions, in the end, life loses all meaning.”

I wonder if in terms of social care and support in Scotland in regard to our valuing of the sector and what it offers and is; the valuing of our workforce, and the valuing of older persons in general, whether we have long since stopped paying the price of dignity?

Donald Macaskill

The following blog is the text of an address given on the 28^th March 2023 at the Luminate ‘Arts and Ageing’ Gathering at the Festival Theatre in Edinburgh.

 

When I was asked to say a few words at the start of this event I did I have to confess wonder what I could say that I haven’t said already to a good number of you over the years – and although I’m a great believer in re-cycling I thought I should at least say something new lest I fall foul to the accusation that with age comes the repetitiveness of remembrance. That’s not to say that what I have said in the past isn’t worth repeating – he says defensively – indeed at the start of this contribution I want to underline a challenge I have often given – especially on the first full day of a new First Minister.

I want to ground all that I say in a few minutes in the earth that the human right to creativity, the right to self and artistic expression, is a fundamental human right. And we need to see that right visibly and vocally articulated in the new Scottish Human Rights Act when it eventually appears. This is not the stuff of occasional opt in, less important than other interventions, do when you can or when resources allow – all that we do today and reflect upon is as fundamental and as intrinsic and as critical as the adequate resourcing of the rest of our civic and individual belonging.

But I have decided to hang some reflections this morning on the words of invitation to join this event – because for me – amongst other things the arts and ageing are about exactly what we hope to get from the event today – namely connection and inspiration and reflection.

Connection is intriguing especially for us solitaries in the room. Yes, I recognise in the words of the poet that no one is an island and that we are all part of the main – but I’m sure I’m not the only one who you know sometimes just wants to be alone! I want to find that corner in the room that encloses me in the security of encounter on my own terms.

I was chatting to someone contemplating going into a care home recently and the one thing that was putting him off – was the thought he would have to be with people 24/7 – that there would be loads of groups and forced camaraderie. That there would be no place for privacy to hide to take off the mask of pretence we all show the world and simply just to be! Now of course that’s a stereotypical fear – and I’m with him – but the truth is much more complex and subtle.

The creative arts whether they are used in care facility or community setting; in one’s own home or in your local – do indeed have the potential to connect, to meet loneliness and break down isolation but they also have the capacity to offer privacy, to help you to discover your individuality and become stronger in your sense of self and identity – in truth the arts are for both islanders and mainlanders.

When I think of connection the image that comes to mind is Avril Paton’s Windows in the West – you probably know it – as someone brought up for many years in a Glasgow tenement it expresses for me what that uncoordinated accidental connection is and portrays the mess of living in community in all its glory.

I could spend a morning exploring the story behind each window, the children fighting, the lovers yearning, the couple settled into slippered age, the partners re-designing avoidance, and so on  – it’s a painting that for me represents a deeper truth about connection, living in community and in proximity with others;  the truth is that people who come together under the canopy created by the creative arts are able to be empowered to be themselves, to live their lives anew and afresh, to choose to be in connection or apart. But always to be changed. The creative arts have both the ability to affirm individual identity and creative community, collective cohesion and passion.

Connection cannot be forced – you just create the moments for happenstance  – the creative arts are the hospitality makers of place and space that enable connection and which provide the nourishment to keep it going when the being one with another becomes tough and challenging.

So today as we connect to one another – can we also think about how we use our work to allow others to connect. Are we creating enough emptiness for connection to happen or are we predictable in our design of the moment; have we created enough silence for language to be heard or have we suffocated the echoes of personal story by intrusive commentary? Do we create the space and place for being in community and the even harder moments of nurturing the aloneness which is essential for connection?

Inspiration is the second expectation and hope for today. For those of us in this room the connotation of age with inspiration is self-evident and natural. We know that the art of imagining and the power of the imagination to restore and renew does not have a use by date. We have witnessed folks in very late age discovering for the first time or anew the power which the creative arts can bring to their sense of self, their image of the world, they have refreshed the person, people and community they want to be.

We have seen the moments of pure joy when someone discovers inside themselves the words they have always wanted to articulate; when someone paints the image that has struggled to take form and substance; when in touch and movement a new expressiveness is born, and a new story is told.

We know that just as it’s important to ask older people how they want to live in their future, so we need to make sure we are nurturing the imaginative dimension of human living and loving well into older age.

The creative arts at their best are the midwives of an imaginative birthing that brings new possibilities, unimagined dreams and unheard-of possibility to older age.

Even in the latter days of breath there is still a desire to be someone to someone; to do something new; there is still a yearning to find, to discover, to experience, to be changed and to explore.

The power of imagining the places beyond the known and the realities beyond the possible do not decline as we age. They just take a different form and more than anything they need the creative arts to foster and nurture their birthing.

But as Anne Gallagher in her opening address has challenged us are we in danger of making our art fit into a clinical science; to perversely limit the boundaries of creativity by being too focussed on outcome and discernible benefit; by using the metrics of identifiable and quantifiable science instead of the dynamic of experience and moment, intuition and instinct, encounter, and expression?

I have always and continue to believe that there is a massive primary nontherapeutic value in the arts – they are valuable in their own right not as something which improves one or changes you – and I know that there is a fine balance there – but when I listened to Mozart in my twenties, Springsteen in my thirties, Natalie Merchant in my forties, Taylor Swift in my fifties – my primary motivation was enjoyment and the experience – is there a danger I wonder especially in resource constricted times that we develop too reductionist an approach to the creative arts in terms of ageing?

And I wonder if maybe there is one specific area where more than any there is a risk that we turn our creative arts and their contribution into therapeutic value and outcome – and indeed that we are only funded and resourced where we can show benefit and improvement in a neurological and clinical sense – and that is in terms of dementia?

A diagnosis of dementia as most of us in the room will know is not a full stop in the grammar of creativity but a new paragraph – but we must be wary of the dangers of presumptive response – I think we must give space to be shocked and surprised – to be pulled away from predictable expectation and onto a journey with the person into new territories of the mind and landscapes of the heart. Life with dementia is not about maintenance it is about living to the full.

I feel an increasing sense that especially in the way in which we support people with advanced dementia that we spend too much of our time in the country of yesteryear – that too much focus is placed on memory and moments and experiences and tools of recollection and remembrance. There is clear neurological benefit in that – I am in no way denying that – but there is also clear benefit neurologically in enabling people to discover the new as well as re-discover the old, to create anew as well as to re-member, to begin afresh rather than re-visit – there is a warmth and comfort in the familiar but there is also a liveliness, an energy, a passion and joy in the new sound, the new place and in the new creation.

The last of the three themes is closely related to what I have just said, and that is reflection.

Reflection in older age is palpably different from the reflective snatches of living we have when younger – and so it should be – because to deny the reality of a life well lived is absurd. The pace slows and changes – rhythm finds a new beat and novel movement – but what glorious richness we have in older age!!! A lifetime of the raw clay of encounter and experience to be moulded into the creation of the present moment pregnant with time lived and lives loved.

We need to give people the opportunity to find their own expressiveness and to discover the language that may have lain dormant within them or indeed to have been deliberately suppressed because of negative stereotypical attitudes to the arts or the contribution and worth of the arts in society.

I think at times we are fearful; of leaving people who are older to reflect lest the pain of memory grip too hard – but there is nothing truly to be feared from the quietude of age; there is no coldness in the absence of activism; for so many it is in the space between the sounds that we learn to understand a new language, form a new way of looking at the world, and to feel restored and renewed in our own selves.

Conclusion

So active creativity has a unique place in the ageing of our society, in active, passive, accepting, challenging age. But we are not talking about waiting for the tick tock of finality as if we are passive recipients of the inevitable. No way.

I believe for all ages the creative arts are a call to purposefulness and decision. One of my favourite poets is the American Mary Oliver who in 2020 wrote in ‘The Summer Day.”  It is a rich poem which describes life and existence from the perspective of a grasshopper. It finishes with these words:

‘I do know how to pay attention, how to fall down into the grass, how to kneel down in the grass, how to be idle and blessed, how to stroll through the fields, which is what I have been doing all day. Tell me, what else should I have done? Doesn’t everything die at last, and too soon? Tell me, what is it you plan to do with your one wild and precious life?’

You will quite possibly have seen the last two sentences quoted in many places. But for me –  for later age the power of the poem is in the question

‘Tell me, what else should I have done?’

What else is there but “falling down in the grass, being idle and blessed, strolling through the fields all day.”

As others have argued this is a ‘provocative question. What is a purposeful productive day as you age? Is it not the contradictory wild impressiveness of the idle industry of a grasshopper? Is it not the creativity of the self for the single outcome of energising the moment? Is it not about the surprise of the encounter, the binding of belonging and the silence of reflection?

Everything dies at last Oliver reminds us – alas ‘too soon’ – the creative arts at their best I believe encourage us to live intentional and not accidental lives, to be the directors of our own play rather than actors for another’s text, to mould the clay of our being into the shape of our desire, to pen the language of our yearning and to dance the steps of our choreography.

What do you plan to do with ‘your one wild and precious life’??

That is a question for all ages.

The creative arts perhaps especially for older age more than anything I know pose that question every day and give the whisper of an answer in response.

Keep adventuring for you do not know the change and contentment, the joy and exhilaration, the pathos and the soothing you bring in the work you do. And let us today and all days connect, inspire, and reflect together.

Thank you

A video recording of this talk as it was delivered can be found at https://luminatescotland.org/resource/arts-and-ageing-gathering/