As I write this Scotland is enduring one of its unique weather days – torrential rain falling from a virtually cloudless blue sky, and no doubt a northerly gale will soon be blowing accompanied by hail or sleet!

It’s a time of year when my love of gardening gets stretched to the point of all patience being lost as I wait for propitious conditions to do all those seasonal tasks which dare not be done lest a spring frost arrives to destroy all effort and energy.

I’ve always been in admiration of my forebears who were farmers and crofters and who managed to live their lives in thrall to the vicissitudes of nature yet who always seemed to maintain a positivity about life. For whom the rhythm of the seasons had a predictability of renewal and a harvesting of hope but for all of whom effort, hard work and action were the ingredients of tomorrow.

I think anyone working in social care at the present time needs such a positivity despite circumstance. In the last few weeks I’ve heard of immoral fiscal savings resulting in someone in their 90s having a long term package of homecare removed with less than 72 hours’ notice; I’ve heard of someone entering end of life care 9 months after they requested a care home place yet no assessment was looking at all likely as happening any time soon; I’ve heard of a coach and horses being driven through the legal rights of supported individuals to choice, personal autonomy and independence and all in the name of public sector protectionism. Whether it is from an Audit Scotland report or the messages and calls I get weekly from those on the frontline I personally fear that Scotland’s social care sector has never faced such a perilous state of affairs.

And all of this angst and heartache in our communities is being played out against a backdrop of budgets being passed at national and local level bringing yet more cuts and ‘savings’ (dressed up in the language of efficiency and best value), and the refrain of a political pretence of normality playing in the background accompanied by a Neronic reframing of reform of systems and processes as the solution to all present troubles.

Few would now deny that the social care system is broken beyond calculation and that it is getting worse every day in every part of Scotland, and by system I don’t mean models or frameworks I mean a legion of supports and care which keeps people alive and offers the prospect of a life worth living. I have little doubt that in the next few weeks and months lives will be cut short or even lost because of the breakdown of social care support in our communities. And for those who might accuse me of melodrama I would invite them to come and walk in my shoes and hold the hard conversations I’m holding.

We’ve entered March – indeed yesterday was the start of meteorological spring, but the gloom and negativity seems all encompassing. And I’ll be honest it’s hard personally to shake myself out of my own sense of depression and fear at the state of things. It’s hard to listen to someone on the phone telling you that they are having to lay off staff not because there is a lack of care work to do out there but because the local authority has decided that only those at high risk can receive care anymore because they have run out of money. It’s really hard not to feel a sense of hopelessness and worry that things will only get worse and all the time echoing in the background are the sounds of political soundbites saying ‘ it’ll be alright tomorrow when we reform things’ or simply an attitude which suggests ‘there is nothing to see here, just move along’

In thinking of what to write this week I have walked in the rain, the cold and sun and become aware of the seasons in an even more acute sense. I have recalled the lives of grandparents and others who got up every morning in darkness, struggled against elements throughout the day, and with weary bones rested through the night to start it all over again – and all their efforts were to birth growth in the barrenness of emptiness, to bring forth fields of corn and a pen full of lambs and calves. Despite all the hardness and trouble theirs was a regularity of practical hope in the midst of cold hard reality.

My mind has also turned to the fact that one of my favourite ‘days’ is happening later this week, on the 7^th we will be celebrating World Book Day. Regular readers will know how I find in words, in prose and poetry, a source of solace and insight, and how getting lost in the world of words and stories can help me (and others I know) find direction and hope.

Words escape from the pages and can create insight and illumination which can proffer change and renewal, give you the inkling of a new direction to follow, or simply the strength to remain true.

In one of those many bits of reading in the last few weeks I re-read some of the Words of the Day which Susie Dent produces in book and social media form. One I think captures the necessary spirit of the moment (for me at least) and that is the 16^th century word ‘respair’, which means fresh hope, and a recovery from despair.

The delivery of social care in Scotland, in care home and homecare, amongst staff and managers, within providers and commissioners, needs its own time of respair , we desperately need to recover from the despair of cuts and reductions, from withdrawal and entrenchment. But that will only happen not at the hands of building utopian systems and frameworks, models or systems, but on the ground in the hands of the women and men who every day make a difference because of their compassionate care and support. We need to work through the blasts of this wintertime to find the energies to plant hope into our actions so that we can harvest a new way of being and doing that renews people. There is so much that is gloriously wonderful in what is happening every day across the country, I really hope in all the talk of change and restriction, of cutbacks and removal, we do not lose sight of the essence of social care.

But our optimism and hope must be grounded in the reality of the hard work that is needed to enable flourishing and fruitfulness to happen. We do not build our tomorrows on the dreams of the night but on the visions of the daytime; visions of a tomorrow better than our moment.

I love so much of what Julia Donaldson writes, and her poem ‘I Opened a Book’ reminds me that escape as I will on World Book Day and on many other nights, we all need to come back to ourselves; and for social care that means not soundbites and systems, but re-discovering the priorities of care in season and out. We need to find respair.

‘I Opened a Book’

I opened a book and in I strode
Now nobody can find me.
I’ve left my chair, my house, my road,
My town and my world behind me.

I’m wearing the cloak, I’ve slipped on the ring,
I’ve swallowed the magic potion.
I’ve fought with a dragon, dined with a king
And dived in a bottomless ocean.

I opened a book and made some friends.
I shared their tears and laughter
And followed their road with its bumps and bends
To the happily ever after.

I finished my book and out I came.
The cloak can no longer hide me.
My chair and my house are just the same,
But I have a book inside me.

Taken from I Opened A Book by Julia Donaldson – Scottish Poetry Library

Donald Macaskill

My late mother had many favourite quotes most of which I have forgotten – so it is good to have a sister to remind me and to continue her voice! But one I can very well remember not least because she used it so often was ‘Treat others the way you want them to treat you.’ It was her equivalent of the biblical imperative often known as the Golden Rule where Christ says: “Do unto others as you would have them do unto you.”

I’m not saying by any stretch of the imagination that I have lived up to the standards of the Golden Rule, but it was what came to my mind when I read the social media posts of the UK Government’s Home Secretary James Cleverley this past week. In a post on X, formerly Twitter, he almost seemed to delight and relish in stating that he had laid an order in the House of Commons on Monday, which will ‘ban overseas care workers from bringing dependents.’ and that ‘this is just one part of our plan to deliver the biggest ever cut in migration.’

What he was referring to was a decision first announced in December 2023 and given a date this past week that from the 11^th March ‘social care workers will not be allowed to bring dependants (that is, partners and children) on their visa.’ It is part of a set of new measures including the fact that the minimum income normally required to sponsor someone for a spouse/partner visa will rise in stages from £18,600 per year to £29,000 and ultimately around £38,700.’ See more details at https://commonslibrary.parliament.uk/research-briefings/cbp-9920/

The UK Government has said that approximately 120,000 dependants accompanied 100,000 care workers and senior care workers in the year ending September 2023. We have of course, no way of verifying these figures and even if they are true, I would want to ask what is the issue?

I have written and spoken a lot about the need for an immigration approach which is sensitive to the uniqueness of the Scottish demographic and the reality that we have such a high level of demand in our health and social care systems. I do not necessarily want to underline those points here because in a sense you either accept or reject the argument that social care organisations are unable to recruit and retain staff at sustainable levels- despite all the measures they have taken including terms and conditions which are better than anywhere in the UK – although still not good enough. But in summary my main arguments about why international recruitment remains vital are as follows:

‘Scotland is an ageing society and has a declining population. Sadly, as we age and live longer, we are not doing so healthily and that brings a personal and societal cost to it. In addition, our population which is still active, and working is older and inevitably less productive because of health, fitness, and energy. We have also seen after Covid19 an increase in the number of those described as ‘inactive’ in the labour market – that is those of working age who have either retired early or chosen not to work. Added to this people are thinking of the ‘life-work’ balance not the ‘work-life balance’ and deciding that doing less work is the way to achieve that.

Therefore, by simple arithmetical calculation we bluntly do not have enough people to do the jobs we need filled to function as a modern society.’

What I want briefly to reflect on today is the hostile nature of the UK Government’s approach to immigration which is doing untold damage to the image of our communities and the sustainability of social care organisations, and in turn is directly affecting the lives and welfare of our fellow citizens. I do not think it is hyperbole to state that the logical conclusion to such a hostile environment is the unnecessary harm and potential deaths of citizens who require social care support. If there are not enough care workers, then people are at real risk.

The statements and invective from the UK Government are creating a toxic environment in which international recruiters of skilled nurses and care staff are already telling me that people across the world are being put off from even considering coming to Scotland because it is perceived that they – and certainly their families – are not welcome and are not wanted. We seem to be sending a message which on the one hand is saying ‘Come and work in our services and supports, in our hospitals and care homes, in our communities and help us be healthy and well… but do not even consider bringing your own families and being well and whole and healthy in your own mind and body. ‘We need you; we want you, but we will use you.’

The commoditisation of people by a hostile immigration policy is a shaming of our shared humanity and politicians appealing for votes are plumbing the lowest common denominator by their actions. What does it say to our contemporary society that those who care for others should not have due care and attention given to their own needs? – and for many that means being with family, creating a space to belong, becoming rooted as our neighbours and becoming our fellow Scots.

We can and have to do better. So back to my old mother, ‘Treat others the way you want them to treat you.’

I have reflected about my upbringing a fair bit this week not least as we are in the midst of Seachdain na Gàidhlig or World Gaelic Week. Taking place from 19th – 25th February 2024, Seachdain na Gàidhlig is the first official nationwide language week of its kind in Scotland, and it aims to promote Gaelic for all. ‘The theme for the 2024 edition of the cultural celebration is Do Chànan. Do Chothrom, which translates to Your Language, Your Opportunity. Participants are encouraged to showcase how the Gaelic language benefits and enriches lives, opening doors for connections, collaboration, and success.’

The week captures part of the essence of Gaelic culture which I have been aware of from my childhood – and that is an openness to others, an enrichening of self by contact with people, an appreciation of difference and with diversity. In essence Gaelic culture recognises the human truth which lies at the heart of all social care, namely that we become who we are by being open, by being hospitable to friend and stranger alike.

Hospitality needs to be at the heart of any civilised society’s approach to immigration. It is a lived ideal which is intrinsic to the Gaelic culture which has so enriched and enabled our country to be what it is and can be. The very concept of hospitality in Gaelic culture is a rich one deserving its own blog, but for our present purposes, in short it carries connotations of health and wellbeing. Work was paused as people were given space to be welcomed, fed, nourished, and nurtured. Our fellow Celts in Ireland even had hospitality to travellers and strangers written into their ancient laws, and most of us know the story that the shock at the heart of the Massacre at Glencoe is first and foremost that it was an assault on the traditional practice of hospitality more than anything else.

To be hospitable is part of the Scottish psyche, it is part of our DNA to welcome and give value to those who as yet do not belong to us.

An immigration policy rooted in the Scottish tradition and spirit of hospitality better fits the humanity of our nation; it better fits the nature of social care which those of us who work in the sector seek to foster, and those who receive care and support expect to experience.

In this Gaelic Week, we are called to give an open hand rather than a shut door to the dependents of those we are increasingly dependent upon.

When I read the statement of James Cleverly and the subsequent justification by the UK Government for this hostile act, I was reminded of the poetry of Uyen Loewald, an Australian migrant of Vietnamese background, who was subjected to racial oppression and discrimination when first migrating to Australia. Her poem ‘Be good little migrants’ is well known to Australians and is a visceral critique of those who expect migrants to sacrifice their human dignity in order to ‘fit in and gain favour’. It is the very opposite of hospitality and should serve as a warning of the sort of society some would have us become. It is not treating others the way I would want to be treated.

 

Be good little migrants

We’ve saved you from starvation

war, landlessness, oppression

Just display your gratitude

but don’t be heard, don’t be seen

Be good little migrants

Give us your faithful service

sweep factories, clean mansions,

prepare cheap exotic food

pay taxes, feed the mainstream

Be good little migrants

Use leisure with prudence

sew costumes, paint murals

write music, and dance to our tune

Our culture must not be dull

Be good little migrants

We’ve given you opportunity

for family reunion

equality, and status, though

your colour could be wrong.

Be good little migrants

Learn English to distinguish

ESL from RSL

avoid unions and teach children

respect for institutions

Be good little migrants

You may fight one another, but

attend Sunday school, learn manners

keep violence within your culture

save industry from criminals

Be good little migrants

Intelligence means obedience

just follow ASIO, CIA spy on your countrymen

hunt commies for Americans

Be good little migrants

Museums are built for your low arts

for your multiculturalism

in time you’ll reach excellence

Just waste a few generations.

Donald Macaskill

Photo by Krzysztof Hepner on Unsplash

On the 1^st of February 2024, representatives of thirty organisations and individuals working in Adult Social Care met at the University of Oxford to discuss the benefits and risks of using ‘generative AI’ in social care. I was pleased to be part of the event organised by the University of Oxford Institute for Ethics in AI, the Digital Care Hub and Casson Consulting. 

I have written a bit over the years about Ai and most recently have reflected upon the potential of chat bots as well as the limitations of their use in social care. What is inescapable is that generative Ai is already being used to a not insignificant extent within the care sector, especially in assessment and care planning.

There are numerous responses to the development and introduction of innovative technologies. Put simplistically one response to all this is to resist and prevent – the expressed concerns around the risks of Ai removing that which is uniquely human, of it supplanting identity, were the same concerns aired in the early stages of human transplant surgery – yet those procedures have become normative today. One position, therefore, is to resist, challenge and remove new technologies. However, resistance and bans rarely work. Another response is to welcome with unbridled evangelical enthusiasm and a lack of critique.

Both positions, I would suggest are erroneous, and therefore my starting premise, is that faced with the inevitably of developments and further ‘progress’ we must develop frameworks and approaches that ensure that technology serves the public good, in an equitable, inclusive, and rights-based manner. It is essential not least in the most human of human industries, for social care, that it is critical to ask questions, raise concerns, balance risks, and adapt or adjust to accommodate cultural and societal technological mores. Concerns around privacy, the use of data, the centrality of individual choice and the advancing of the individual in person-led care and support can only be addressed through dialogue and mutual design development.

For me a critical starting point has to be a human rights-based approach to Ai and yet certainly for its application in social care there is a dearth of both research and writing on what a human rights-based approach to the use of Ai might look like. I offer one or two thoughts in this blog.

Many readers will be familiar with the PANEL principles which are the bread and butter of many human rights dialogues and models. The acronym means Participation, Accountability, Non-discrimination, Empowerment and Legality.

• Participation – People should be involved in decisions that affect their rights
• Accountability – There should be monitoring of how people’s rights are being affected, as well as remedies when things go wrong
• Non-Discrimination – Nobody should be treated unfairly because of their age, gender, ethnicity, disability, religion or belief, sexual orientation or gender identity. People who face the biggest barriers to realising their rights should be prioritised when it comes to taking action
• Empowerment – Everyone should understand their rights and be fully supported to take part in developing policy and practices which affect their lives, and
• Legality – Approaches should be grounded in the legal rights that are set out in domestic and/or international law.

So what might PANEL mean for Ai and social care?

Participation – from the moment of design, through application and use, to evaluation and assessment Ai in a social care context must evidence the intrinsic role of the individual as a person, rather than just the individual as part of a collective. This is not without challenge because it means design and development with the end user not just as an optional consideration but rather in the driving seat of investment and priority. It means for instance that the development of time-saving care planning approaches using the machine-learning of Ai must take account of the individuality of the person rather than make generalist assumptions, however well based and broad in the use of harvested data they may be. As I have reflected before the interaction and encounter between two people at the end of which a care plan or an assessment has been completed CAN and will be aided and assisted by Ai (just as much as it has been by pens and iPads) but the moment the technology, the device, the model gets in the way of the particularity and uniqueness of encounter, is the time when false assumptions, stereotypes and prejudices are risked. There must be space for the unpredictable, the surprise, the uniqueness of the person to contradict the norm of others. That is just one example but this process of participation has to be ongoing and continuous in all parts of Ai development and application. The role of individuals as continuing co-designers and evaluators should be primary.

But participation in Ai whether in design or application and review necessitates an increased awareness and knowledge of those who use social care, an enhancing of the digital and technological skills of the workforce at all levels, and a robust engagement of all stakeholders. Participation cannot happen in the vacuum of ignorance and rarely is effective without prioritised resource.

Accountability – Some of the fear and reserve around Ai and its application to social care is rooted as much in a lack of awareness of accountability as in any risk aversion. We all need to know, not least with the rapid speed at which Ai systems and tools are developing, about who is accountable for the use and application of Ai not least in the lives of those who may have clinical or health vulnerabilities and around whom there may be issues of capacity and consent. There have been understandable fears, not least centred upon the human rights to privacy and autonomy, over the use of data. Data without clear codes of behaviour and conduct is dangerous; it is a digital story which can become a nightmare. If public distrust or concern is to be replaced by a positive adoption of new technologies as beneficial then there must be clear oversight on the application of Ai and not least on the collection, storing, access and ownership of all personal data. Personally, I do not believe the use of Ai to better enable consistency within an individual’s care and support pathway between diverse organisations and agencies is antithetical to individual citizen control and access. But the ownership and rights around personal data held by citizens must be much clearer than they currently are. Human rights approaches can massively assist that assurance.

Non-Discrimination – One of the earliest critiques of Ai and especially some of the very early versions of generative Ai was what appeared to be inherent system bias within the data that was being utilised. Human rights law and practice is very clear and consistent around the issues of individual identity and non-discriminatory practice. It would be antithetical to progressive social care for there to be built in bias within any Ai tools which served to limit the rights of individuals based on protected characteristics or other aspects of individual identity. Once again, the way to prevent this risk from occurring is robust evaluation of practice, open access to data utilised, and human rights frameworks which interrogate practice in a non-discriminatory manner.

Empowerment – For a long time those who have used social care supports and services and those who work within provider organisations have recognised that at the heart of all good and effective social care is an empowerment of the individual to take control of their lives, to be the directors of their own actions, and controllers of their own independence. At its best social care enables an individual to discover their unique identity, to flourish and thrive in their humanity. It is not a one-size fits all approach but one that validates the person as who they are and enables them to achieve their potential.

There is an untapped potential in the use of Ai within a social care and support context to further underpin the autonomy, control, choice, and empowerment of the person receiving support. But only if we enable such models and approaches to grow and develop. Critically this will involve a freeing of the regulatory noose that sometimes exists around care services, and which serves to stifle individual action and risk-taking, often in the name of safeguarding and protection, but frequently based on risk aversion and system protectionism. Again, there is a real potential for a human rights-based approach to Ai which enables empowerment to occur rather than consolidates control, power, and resource in the hands of a minority (whoever they might be but certainly including Ai developers and system owners.) The risk is the opposite occurs and the use of Ai results in a further limiting of human autonomy, and a use of models and tools which observe, monitor, control and assess without the direction or voice of the person being supported.

Legality – All human rights models, frameworks and approaches have a distinct and critical vein of legality running through them. The lack of legal protections and frameworks around emerging Ai is a matter of concern. It has always been the case that it takes a few years for legislators to catch up with emerging science and technology, and often by the time that occurs some not insignificant harms and mistakes can be made. In social care the use of Ai must be undertaken utilising existing human rights protections. That is why that ethical approaches to Ai whilst they are hugely valuable and underpin a human rights approach, on their own are less than effective without robust legal and juridical protections. There is a real potential for the social care community to not only self-police the use of Ai but to model its use for others – which is why the work of the Oxford group is so important. We should not be afraid of seeking to develop new legislation and of using existing laws in a robust manner. This may also mean being courageous enough as an international social care and human rights community to re-draw concepts such as privacy for the new technological age of Ai.

I hope some of these thoughts spark and continue a conversation. Ai is here, it is changing every second of every day. We dare not seek to hide our heads in the sand but as a social care community of citizen care and support individuals, frontline workers, and social care thinkers, we need to mould and influence that Ai tomorrow for the betterment of all.

Donald Macaskill

A couple of weeks ago I spent time in the company of someone who I only knew fleetingly but who was so passionate about the care and support of older people and who had spent so much of his free time across his life advancing the cause of people who needed care. Within 24 hours that person had died suddenly. I was really shocked that someone who I had shared time with had died within a day of our meeting.

I know I am not the only person who such an event has happened to, and I won’t be the last, but it is something which draws you back on yourself. It makes you begin to realise the fragility of life; it instils in you a sense of just how out of control our living is. It also made me feel how every day, every moment and hour is precious – and it made me reach out to hug and hold my young daughter ever so much tighter that night.

As I have reflected on this sad event and also on the passion the individual had for care, I have come across the notion of ‘intentional kindness.’

In research which was published last year two American scholars evidenced the tremendous benefit which was brought to both giver and recipient by random acts of kindness. They said:

‘Performing random acts of kindness increases happiness in both givers and receivers, but we find that givers systematically undervalue their positive impact on recipients. In both field and laboratory settings (Experiments 1a through 2b), those performing an act of kindness reported how positive they expected recipients would feel and recipients reported how they actually felt. From giving away a cup of hot chocolate in a park to giving away a gift in the lab, those performing a random act of kindness consistently underestimated how positive their recipients would feel, thinking their act was of less value than recipients perceived it to be.’

There are a number of writers who have studied and published on what has become known as ‘intentional kindness’ but none more so than the psychologist Dr Tara Cousineau who wrote ‘The Kindness Cure’. Cousineau has remarked that as humans we are ‘wired for compassion and kindness as Charles Darwin observed many years ago. He suggested that the instinct for compassion is more salient than that of physical strength and fitness.’

I think both she and Darwin are right – kindness and compassion are natural and normative, but she is also right in saying that kindness is not easy and that we have to create the conditions to enable it to flourish and thrive. That we have to be intentionally kind. Kindness is a deliberate not accidental act. It has to be intentional.

I like the concept of intentional kindness and indeed find it chimes with some contemporary psychologies and philosophies. Being intentional means that I have to make conscious and deliberate choices about life and relationships; it instils a degree of positivity and purpose and should force me to edit it out the unnecessary and the distracting. Being intentionally kind allows me to be more present in the moment and its energy should give me more purpose to achieve what is meaningful and important.

In my desire to ‘carpe diem’, to make the most of every day and moment in the light of the sadness of a sudden death, I am today aware that being actively and deliberately, intentionally kind should be my priority. It will not be easy, and I will fail and falter but I suspect it will bring more benefit than loss.

Social care is a discipline and calling which enables the practitioner of the arts of compassion to continually, professionally, and consciously be intentionally kind. Kindness not born out of sympathy or pity, but rather rooted in the appreciation of the dignity and uniqueness of individual humanity; kindness through tough times and hard behaviours, kindness that bridges hurt and sorrow, that shows the best of our being human.

The poet Wes Fessler put it brilliantly:

To Lift Each Other

Is it possible to build a dream by tearing others down?

Is there any way to fly if we refuse to leave the ground?

Not a gain was ever made while shoving someone else aside.

In the course of stopping others, our momentum is denied.

When we find the good in others, praising them for who they are,

we build speed for one another. We’re both able to go far.

It is possible to reach our dreams together if we try.

We must learn to lift each other if we ever hope to fly.

From poems for peace — Phonetic Planet

Donald Macaskill

Photo by Copper and Wild on Unsplash

I have been away in London for a couple of days of meetings and events. It’s been a week which has seen my head and mind in the space of technology, not least Ai, and its potential benefits and challenges to the social care sector and I hope to write about Ai in social care in a future blog.

But it has also been a week where I have been thinking about identity and what makes us truly human. My week of reflecting about identity started with the news on Tuesday that the Tech billionaire Elon Musk’s Neuralink company had successfully implanted one of their wireless brain chips in a human being.

A BBC article on the event stated that Musk’s company had joined a group of a handful of other companies which had undertaken such implants. It noted that:

‘Among the other companies to make similar advances in the field is the École Polytechnique Fédérale in Lausanne (EPFL), in Switzerland, which has successfully enabled a paralysed man to walk just by thinking. That was achieved by putting electronic implants on his brain and spine which wirelessly communicate thoughts to his legs and feet.

Mr Musk’s company was given permission to test the chip on humans by the FDA in May 2023. That gave the green light for the start of the six-year study during which a robot is being used to surgically place 64 flexible threads, thinner than a human hair, on to a part of the brain that controls “movement intention”, according to Neuralink.

The company says that these threads allow its experimental implant – powered by a battery that can be charged wirelessly – to record and transmit brain signals wirelessly to an app that decodes how the person intends to move.’

Over the next few days, the media was filled with discussion and debate on the risks and benefits of such developments. There are clearly a whole set of ethical issues involved. Is it appropriate that to achieve such ‘progress’ that so many animals are killed during experimentation? Does the technology raise issues of equality given that the majority of those 22,000 people who by 2030 will have had a potential implant fitted will have to pay for it? Are such processes leading to the commoditisation of human beings? What happens to the data that is created by such an implant? Will we be able to ‘download’ the mind? Where is the data to be stored? What happens when the person dies, and the chip is removed? There are as many ethical questions as there are potential answers.

But one question which intrigues me for the purpose of this blog is the extent to which such ‘brain chips’ and the massive resource attached to their development seem to be premised on a particular understanding of the human person and what constitutes a ‘whole’ or ‘purposeful’ person or life. It is a question about human identity. It is this question that has been part of the disability civil rights movement for many decades. The answer from that movement led to the social model of disability which states that it is not the person with a disability who is limited or ‘disabled’ but the way in which society and the environment is structured which serves to limit or restrict a person. We have – or so many might have thought – moved away from a medical or clinical approach to disability which tried to ‘fix the problem’ and which was premised on a notion of human wholeness if not perfection.

So not surprisingly in response to the Musk story and other similar ‘implants’ there has come the assertion that whilst many individuals – perhaps those who have become paralysed as a result of an accident – may indeed find such technologies as potentially liberating and curative, there are thousands of others who define their very identity and self through their disabilities. Is there a danger that these new approaches and technologies will seek to neuter disability? Will they place an even lesser value on those who are not deemed ‘whole’? There are a whole flood of ethical concerns in these new technologies.

Some of those questions came to my mind when in a spare hour I visited one of my favourite exhibition spaces in London, the Wellcome Collection, which is just opposite Euston Station. A great place to stop by before getting the train north. Its current temporary exhibition is entitled ‘The Cult of Beauty’. Displaying over 200 objects, paintings, films, and interactive displays the exhibition explores notions of beauty across time and cultures. It states:

‘Around the world, beauty is constantly seen as an ideal worthy of going to great lengths to achieve. But what are the driving forces that lead us to believe in a myth of universal beauty, despite its evolving nature?’

It questions established norms on beauty, demonstrates the influence of culture and not least gender on changing attitudes, challenges stereotypes and presumptions including some of those that exist around age. One of my favourite installations was Makeupbrutalism’s multimedia installation entitled ‘It makes no sense being beautiful if no one else is ugly’ and which ‘encourages us to question our beliefs, confront our raw selves beneath social pressure and to peel back the layers of the beauty industry.’

It notes:

‘We have created ideals of beauty which very few can live up to. We include and celebrate those we have assigned beauty to and exclude those we think are ugly. These hierarchies are harmful. When beauty becomes privilege, that is harmful.’

In a week where the very concept of identity was uppermost in my mind with reflections of what makes us who we are in Musk’s ‘brain chip’ future the exhibition quite rightly addressed the idealisation of the male and female human body not least in Greek and Roman art which has been so dominant in western culture. But sadly, for me at least, what was noticeably absent (except in a tangential way) was a direct challenge to the body idealisation that has ‘disabled’ so many millions across the ages. Such ‘disablism’, the viewing of disability as something not perfect or needing changed has been present from biblical narratives when those who were physically ‘not whole’ were the object of healing to paintings of medieval perfection which presented unpopular kings as ‘hunchbacks’ to the horrors of the way in which the study of faces ‘physiognomy’ was used by Nazi extremists as the tool of eugenics. All such responses based on an ideal which gave no room or tolerance to individual identity and certainly not to physical or intellectual disability.

Social care and support is perhaps in a unique place in being able to provide the space and affirmation, the authenticity and validation that enables a person to celebrate their unique identity. Social care at its best challenges the ‘wholeistic’ assumptions about disability, capacity and contribution and allows people to be who they are.

That is why social care and support is so important – it is not trying to fix someone in a clinical way, because of an inherited conscious or subconscious assumption that someone is not whole and must be ‘healed’, but it is rather fostering the ability for that person to become fully who they are and to thrive within their identity. It is truly identity affirmation at its best.

So regardless of age or appearance, label or limitation, social care support accepts and affirms the person for who they are. That’s why it matters and why it needs to be valued even more in a world of technological change, ‘brain chips’ and fluctuating ethical values. For me that is the essence of real beauty.

Donald Macaskill