Reframing dementia

An edited version of a talk with Innovations in Dementia 14 October 2021

I want to put forward two interlinked propositions, which I hope won’t prove controversial, but which I don’t believe are firmly embedded in understanding and discourse, in policy or practice as they should be:

1. People’s experience of dementia as a health condition is as much about the nature of the world they inhabit as it is about the impact of the underlying condition and that people’s health can decline or improve as a result of extrinsic factors that either do, or which can fail to, anchor people in the world and their own selves
2. People’s ability to live their lives with dementia, is, as with disability more generally, is a product of the interaction between people who have an underlying health condition and social structures which can either enable or disable them.  It is a matter of respecting, protecting and ensuring people’s human rights to remove those barriers and to put support in place for people to live their lives on an equal basis with others.

If you accept these two assertions, then it is both feasible and I would argue, morally necessary, to pursue social change that averts avoidable decline in cognitive, mental and physical health and which removes the barriers that stop people with dementia from participating in society. That is to say, as for everyone, social inclusion is the route to wellbeing.

I’m going to start by talking about my dad, who died just over a year ago in September 2020.

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The most important person in my dad’s life was my mum.

His second greatest love was sport.

He loved his home – the place they bought after they retired

But he loved travelling – all over the world they went, from Sidmouth to Sri Lanka

He came to life when with his granddaughter who he adored

He also came to life around custard slices and enjoyed afternoon tea

He was a historian, particularly the first and Second World War.  He had taught history as well as PE during his teaching career

He loved his cats.  And dozing with his cats.

And he loved music – brass bands were his favourite, but he had catholic taste.

In every picture I’ve just shared, my dad was living with Alzheimer’s.  This film clip was taken about a month before he died. 

I could have shown you pictures from earlier in his life, when he was a strapping young, English schoolboy-champion athlete, or at his wedding, or holding my or my sister’s hand when we were little – photos that without me saying it would say to you ‘in happier times’.  

But so many of the happiest times in his life and our lives together happened after his diagnosis with Alzheimer’s. 

His diagnosis was life changing certainly, but it was not life ending. 

He did not die that day. 

Yet so often this is the unspoken in the stories we tell of and hear about dementia.  In particular, the constant slide into nostalgia, around music, images, life stories, as though our task is to remind the person and ourselves of who they once were and why they mattered, not of who they are and why they matter today. 

In a powerful piece in the Irish Times on New Years Eve 2019, Prof Suzanne Cahill wrote:

“All too often we hear dementia referred to as the thief that steals the individual; the person is the “patient” or “sufferer”, a “shell of her former self”; the family caregiver is the “hidden victim” and the increase in the number of people with Alzheimer’s disease is a “rising tide/tsunami’. 

Words are powerful and influence how we perceive and interact with people. These words do nothing to promote the agency, dignity and humanity of the individual who, no matter how severe their cognitive difficulties, is never gone and is still a recognisable human being that must be treated with dignity and respect.’

This displacement from ones own personhood and identity can start quickly. 

Quite early on, and I think because he believed it might offer a cure, my dad decided to enrol on a trial to test a new treatment for Alzheimers.  My mum and I accompanied him to some hard-to-find offices near Harley Street. I immediately sensed the impersonal nature of it all, and when the Director came to speak to us about it, and addressed herself to me and my mum, never making eye contact with my dad, our worst suspicions were confirmed.

I’m not going to pretend that it’s all plain sailing.  I’m not sharing photos of the hard times.   I love that clip of my dad dancing to Cotton Eyed Joe but 10 minutes earlier, trying to get him to try on shoes, I was struggling not to lose my temper, though it ended up with us both laughing.  

The first 6 months of last year almost tipped my mum over the edge, trying to support my dad to be at home during the first lockdowns.   She succeeded, almost to the very end, but at huge cost to her wellbeing.  But they often would break the tension by falling about laughing together at the situation too.

And of course all that I can talk about and represent is my account of my dad’s outer world during this time – not his own inner world, or how my mum, or my sister or his friends encountered him. Nevertheless, while dementia changed things about my dad and about what he could do, for those of us that knew him well, it didn’t change who he fundamentally was. 

But that’s because who we are is not something over which we have complete control.  Translated, the South African philosophy of Ubuntu means ‘I am human because you are human’. My dad was my dad because I am his son.  My mum his wife, because he was her husband.  Our identities are formed, affirmed and reaffirmed through our relationships with others and with the world around us.  Today I am only the author because you are reading.

As Hilde Lindeman argued in her beautiful essay ‘Holding one another in a time of dementia’:

“….an identity is a representation of a self. It consists of a tissue of stories, constructed from not only first person but also many third-person perspectives, depicting the more important acts, experiences, relationships, and commitments that characterize a person and so allows that person and those around him to make sense of who he is. Because we change over time, some stories in the narrative tissue cease to depict us faithfully and fade into the background, to be replaced with newer narratives that represent us more accurately.”

She explains that ‘Our identities matter morally because they function as counters in our social transactions, in that they convey understandings of both what we are expected to do and how others may or must treat us’

And she goes onto say that:

“It’s not only other people who hold us in our identities. Familiar places and things, beloved objects, pets, cherished rituals, one’s own bed or favorite shirt, can and do help us to maintain our sense of self.   And it is no accident that much of this kind of holding goes on in the place where our families are: at home. ‘‘The home,’’ observes Iris Marion Young, ‘‘is an extension of and mirror for the living body in its everyday activity,’’ and thus is ‘‘the materialization of identity’’ (Young 1997, 150). Our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are. They are the solidly familiar axes around which our changing world revolves.”

In my own writing about this, inspired by Hilde’s piece, I’ve used the metaphor of an anchor – of how these various things anchor us in the world and in our own selves.  They reaffirm our identity and are what provide us with meaning, purpose and a sense of belonging. And that anchor can be pulled up, allowing us to drift away before our time, if we fail to respect and sustain them. 

I believe that’s what happened to my dad and it’s why he died when he did.

Lockdown upended all of our lives, breaking connections, disrupting routines and rituals, stopping us from being in the places or doing the things from which we derive meaning and purpose and identity.  For people living with dementia, whether in the community or in institutional care it has proved catastrophic.   Anecdotal evidence is now confirmed by academic research on the impact of isolation on people living with dementia.  The Long Term Care Covid project had already begun to include mortality rates of people with dementia that had died not with Covid-19 but because of the impact of the restrictions on their health and wellbeing.   

Covid-19 did not kill my dad.  But he died because of it.  He had food, shelter, could get washed and dressed, support with medication – all the things to keep him alive.  But lockdown unravelled the life that provided him with his identity and sense of self – his reasons to be alive. 

He didn’t see his granddaughter. Didn’t eat custard slices. Didn’t go to watch rugby or see the friends he watched rugby with. Didn’t go for walk. Didn’t go on holiday or day trips. Couldn’t chat to neighbours.

Unable to really understand why, he came to see my mum and latterly me, as the ones depriving him of these things.  And so he fought back by refusing his medication, to get dressed, to have a wash.  He rejected the support we brought in from a homecare agency, not least because the careworkers did not respect his identity and agency.  On their first full day, they ignored my mum’s request that my dad get dressed himself with their supervision and support should he need it and just went ahead and did it.  As challenging and inconvenient as all this was for us, in reflection I think he was protecting the one thing he could protect: his autonomy and sense of self.   

And then he ended up in hospital, for 9 avoidable days.  And it finished him off altogether. After being briefly discharged to a care home, my dad became ill and returned to hospital where he died on 12 September 2020.  As I said earlier, his death certificate lists Alzheimer’s as the cause of death.  What actually killed him was kidney injury, most likely caused by severe dehydration.  The factors which lay behind his becoming so dehydrated are unclear, but I worry that in having attributed his death directly and solely to the condition of Alzheimer’s itself, we have no incentive to look at the extrinsic factors that may have influenced his willingness to eat or drink, or at the quality of care. 

With respect to people with learning disabilities we have coined the phrase ‘diagnostic overshadowing’ to describe situations when a health professional makes the assumption that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants.   Might the exact same thing be happening with respect to people with dementia?  And not only overlooking other biological determinants, but the extrinsic factors shaping a person’s wellbeing too?

The Kitwood ‘Flower’

Of course, none of what I am saying or observing is new – Tom Kitwood set it out almost 30 years ago in Dementia Reconsidered.  To support people to live as well as possible, we must start with their personhood and identity and that, as Hilde Lindeman says, is rooted not just within us, but in the world we inhabit.

And as she concludes her essay:

“If the familiar places and objects of home importantly hold us, it is better for us, all things being equal, to stay in our homes as long as we possibly can. However, when home care for people with progressive dementia is left almost entirely to family members, the familial capacity for care may be exhausted well before the benefits to the demented person of living at home have come to an end.”

Which brings me to the vision and approach for the future of social care promoted by social care future.  This vision was co-created by members of our movement, including people living with dementia, and tested extensively on public audiences.  But I led the drafting of it and my parents experience of dementia was at the forefront of my mind as I did so. 

Echoing Hilde Lindeman, it begins by offering a North Star:

‘We all want to live in the place we call home, with the people and things that we love, in communities where we look out for one another, doing what matters to us’

But we won’t achieve this based on how we organise social care today.  So we go on to say that:

‘When organised well, social care is about weaving a web of support and relationships in our local community that we can draw on to live the lives we want to, whatever our age or stage in life.’

That is to say, it is about respecting identity and personhood by focusing on the things that ‘hold us’ and on how to ensure they continue to hold us. 

What does this mean in practice?  I think there are already countless examples of innovative good practice that, if brought together could completely transform the way support is organised, moving away from institutional care and transactional time and task homecare, and in turn the quality of people’s lives. 

When we centre on what matters to people, not what’s the matter with people. 

Where we focus on strengthening, not on exploiting important relationships. 

Where we see people as part of a warm wide web of community, and as important to other people in that community. 

When we remember that people are loved. 

And when we remember that the most important thing for a person isn’t the homecare worker putting a ready meal in the microwave, but sitting eating an enormous custard slice in Barton Grange Garden Centre.

And this is not just about health and social care systems and support.  In common with the struggle for disability equality and inclusion more generally, it’s about removing barriers, changing social attitudes, reforming discriminatory policy and practice and making reasonable adjustments to open up society more generally and to secure everyone’s right to be in the world.

I want to finish with a real-life example that exemplifies what I’m talking about, and on something that hugely helped my dad and mum – the facilitation of a community circle

As my dad’s need for support increased, so they both found it harder to continue doing the things and going to the places together or separately that gave them both meaning and purpose.

My mum and dad’s family, friends and neighbours had indicated that they were there for them and would offer support and my mum had begun to reach for support.  But she didn’t feel able to ask for that support to become routine sufficient that she could rely on it and plan her and my dad’s life accordingly, and there was hesitation on the part of friends and neighbours about what they should offer, both because they didn’t know what was needed and sometimes felt uncomfortable asking or suggesting. 

So with the support of Helen Sanderson and Cath Barton from Community Circles we invited people around to my mum and dads, while my sister and I joined by Zoom.  Helen facilitated, first inviting my mum to explain their situation and then friends and neighbours and ask questions and make suggestions.  It was a very emotional meeting, not least because you could literally see the weight lifting from my mum’s shoulders first as she shared the challenges they faced and then as the others began to problem solve together and offer to do things to help.  As a result, my dad was able to carry on going to watch the rugby, my mum was able to carry on going to choir, friends would come ‘round to see my dad so my mum could go to the shops.  The people that ‘held them’  were invited to work out together how to hold them while they lived with dementia.  And as a result they were better able to be in the place they called home, doing the things that didn’t just keep them alive, but which gave them reason to live. 

Crucially, the family, friends and neighbours, in their coming together and reaffirmation of their relationships with my parents, were held by them.  Take my dad’s friend, Simon, for example, with who my dad had journeyed all over the country to watch Leigh Centurions, who – for a little while longer at least – could continue to do so. 

Sometimes though, it’s the power of an apparently simple gesture that really captures how different an approach is and the radically different values underpinning it. 

When I first read the quotes I shared from Hilde Lindeman they were in an article by the now UN Special Rapporteur on disability rights, Professor Gerard Quinn, in which he summarised her argument as saying ‘home is the scaffolding of the self.’ 

So I will never ever forget how when she first met my parents, Helen Sanderson started by honouring their personhood and identity. The the very first words she said to them were:

‘Thank you for inviting me into your home’

Why low levels of police-recorded disability hate crime should concern us most.

Some time ago, following a number of attacks on Jewish cemeteries, Greater Manchester Police launched a campaign to encourage Jewish people in the city to report anti-Semitic hate crimes. The campaign was a success. The following year, the annual statistics on police recorded hate crime for England were published, showing much higher levels of recorded anti-Semitic hate crime in Manchester than other areas of the country, including London. One newspaper headline read ‘Manchester – Britain’s anti-semitic hate crime capital.’

I think about this story every year when the police recorded hate crime figures are published, and now for the past few years when – for reasons unclear – some disability charities pre-empt publication of the official statistics, by issuing Freedom of Information requests to every police force in the country asking for the same data (is this a good use of charitable and public money?). And every year they present only this data, and suggest that disability hate crime has risen again.

In fact, the Crime Survey for England and Wales finds that the incidence of Disability Hate Crime has declined by 38% since the year ending March 2008 and year ending March 2009 combined surveys. And as the 2020 report explains:

‘This fall in CSEW hate crime over the longer-term is in contrast to the police recorded hate crime series. Police recorded hate crime has more than doubled between year ending March 2013 and year ending March 2020. The contrasting time series reflects the improvements in crime recording made and better identification of what constitutes hate crime by the police over recent years.’

So if you’re looking at the interactive Disability Hate Crime map published by United Response and promoted by Leonard Cheshire, you are not reading data about incidence of hate crime where you live, you are reading data about levels of reporting and the recording of disability hate crime by the police in those areas.

Why is this an important distinction?

Firstly, because people need to know that there is no evidence that the incidence of hate crime is rising – the opposite is true for the country as a whole. Nor is the data on recorded disability hate crime a reliable indicator of incidence in a particular area of the country or overall.

Second, because this focus distracts from the institutional challenge, which is closing the gap between actual incidence and recorded crime. Put simply, we should be more concerned about those areas with low levels of recorded disability hate crime than high levels, because it suggests the police and other agencies are failing. We want to see recorded disability hate crime rise.

Third, because it distracts us from the drop in prosecutions of disability hate crime and the responsibilities of the Crown Prosecution Service.

And finally, because, as we have seen, following the horrific murder of Sarah Everard by a serving police officer, people live their lives in fear and fear limits what we are able to be and do in life. Helping people to be less fearful is a liberation cause. Yes, reducing the fundamental source of that fear – crimes motivated by prejudice and hostility – must remain a priority and every hate crime is wrong. But equally, how we communicate about crime and the way we frame evidence also shapes how people feel the risk they face and how they will as a result lead their lives.

We should not be misrepresenting data and communicating in a way that adds to the problem.

Love should not tear us apart

Image by Caring Across Generations

“There is no such thing (as society)! There are individual men and women and there are families and no government can do anything except through people and people look to themselves first.” – Margaret Thatcher

Last week, Sajid Javid caused a bit of outrage on my Twitter timeline when during his Tory Conference speech he said of care that family came first, then community and then the State.  Of course, Javid was merely rehearsing Conservative values to the Party faithful.  He was also, I’d argue, simply pointing at the elephant that is always in the room where care is concerned, and welcoming it. 

The truth is that most care and support takes place without the involvement of the State, including where the State is involved in some way.  It is organised, secured and sustained by and through individuals that have cause to draw on care or support, their families and informal support networks.  The problem is that the extent of this reliance on informal support has become hugely unsustainable, harming those that have cause to draw on support, family members called on to offer it, society more widely and the economy as too many avoidably leave the workforce to care for others. 

Making this argument is not a case against family and for the State.  And the left would be making a huge mistake to cede ‘family’ and ‘community’ to conservatives.  The conservative formula is harming family life.  In its overreliance on family it is, perversely, tearing families apart and undermining the capacity of communities to support each other and the economy to function effectively.  Rather, it is to say that the formula should not be family, then community, then State as a safety net, but rather individual plus family plus community plus State as a partnership. 

A new progressive agenda should centre on the State investing in this partnership – in strengthening the capacity of individuals, families and communities to support themselves and one another.  This will demand greater public investment, but it will be investment to unlock the resources and agency of individuals, families and communities, not to supplant them.  It will be an investment in good relationships and family wellbeing and social cohesion as well as the economy.

In the USA, the Caring Across Generations campaign has successfully begun to frame investment in home care as investment in ‘essential infrastructure’, making jobs and care central to recovery from Covid-19.  

Isn’t it time for us to do the same?

Not enough beds?

A few years ago I came across a quote by Hilde Lindeman in a European report on deinstitutionalisation by Professor Gerard Quinn, which can be summarised as saying ‘home is the scaffolding of the self.’ I’ve quoted it numerous times and adapted its themes to talk about the importance of being and feeling anchored in our identity and how this is manifest in familiar people, places and things & how this should be the mainstay of effective personalised care and support.  

Yet it was only today that I got ‘round to reading the full essay, which I highly commend to anyone with an interest in improving the way society responded to people living with dementia.  I was struck in particular by this in her conclusion:

“when home care for people with progressive dementia is left almost entirely to family members, the familial capacity for care may be exhausted well before the benefits to the demented person of living at home have come to an end…  This state of affairs is not inevitable. Had the grandmother in my story been able to remain in her home, with adequate professional help and a carefully structured daily routine, she might not have gone downhill so rapidly.”

I recognise this so strongly from my own family’s experience.  Effective home-based support wasn’t available.  My mum could not go supporting my dad alone.  But residential care was not the answer. Nor was it what he or we wanted.  It was simply the only available option. Up came my dad’s anchor (having been dragging along the bottom through lockdown in any case) and then off he drifted.

Today’s genuinely excellent new report on the future of adult social care by the Alzheimer’s Society, in partnership with Future Health, pursues a similar line of argument.  In its vision for the future of social care it calls for free personalised care (my emphasis – very welcome) saying ‘It would take care beyond a set of physical tasks and enable far greater flexibility in the approaches used based on the needs and wants of the user, including far more opportunities to access care within the community.’  The report goes on to note that:

“By 2030, if no change is forthcoming over half a million people in England with dementia will require care home level support. This represents an increase of nearly 170,000 from the numbers recorded in 2019. The number of beds in care homes however is only projected to reach 450,000 by 2030, leaving a shortfall of 50,000 people with dementia without the care they need.   This gap needs to be a driving force for real change.  Building more personalised, community based and preventative care models will be critical to ensuring people get the care and support they need and want. Any long term social care plan should have this as a primary objective. A major part of delivering on this will be moving away from traditional ways of seeing and talking about users of social care as ‘vulnerable people’ and instead approach the challenge by asking questions aimed at eliciting a response that is personal to the individual.  This can be as simple as asking ‘what matters to you?’, and then working out how this can be achieved.”

That is to say, it classifies reaching this point not as a failure to meet demand for places in care homes, but as a failure to have put the alternative community-based support in place, with the rise in demand for care home placements something to be avoided.

Nevertheless, this nuance appears not to have translated into Times newspaper piece on the report ‘shocking shortage of beds for patients with dementia’.  The piece says that ‘campaigners said it was “shocking” that more than 50,000 people with severe dementia were likely to be denied a care home bed by 2030 because the struggling sector was failing to keep up with demand, underlining the scale of the social care problem the prime minister promised to fix.’  Alzheimer’s Society CEO Kate Lee is quoted as saying “It’s shocking that even if every care home bed in the country was reserved for someone with dementia, we would still be tends of thousands short within a decade.”  While Kate is quoted at the end of the piece saying it is possible to achieve “a brighter, better future, where quality care keeps people at home for longer” the framing of the piece seems likely to lead readers to conclude that the urgent issue is ‘more beds’ not investing in the support people need to live well in the place they call home.  The use of ‘patients’ in the headline reinforces this idea, blurring distinctions between hospitals and care homes.

It’s such a shame, because there is so much to welcome in the report, from the beautifully chosen photo on the front cover, through to the adoption of Social Care Future’s vision, the analysis of ‘the problem’, to the advocacy of free personalised care. 

On the eve of the anniversary of my dad’s death – accelerated both by Covid lockdowns and by the inadequacies of the health and care ‘system’ – I genuinely am moved to see this shift in the report and wish the society great success in helping change the terms of the debate about the future.  My challenge to the Alzheimer’s Society is – as it was during Dementia Action Week earlier this year – to sing with one voice, and make sure everyone is on board and understands what the organisation is advocating, otherwise we will see more misteps like this, where crucial substance is lost in the clamour for coverage or clicks.

People don’t want ‘beds’, they want a life, whatever age or stage they are at.  Let’s make that our urgent mission.

What do I do?

Portrait of me working by my 7 year old daughter

I sometimes get asked what I do, professionally. As a freelance working across multiple projects, I find myself struggling to answer, despite it being ten years next week since I stepped down from my role at the Equality and Human Rights Commission to begin this working life.

My paid work is as a consultant, but this sometimes blurs into unpaid activities, in particular to try to win change when it comes to social care.  My work has spanned strategy and policy development, qualitative research, strategic communications, training and workshop development and facilitation, convening and strategic grant-making.  I’ve worked for and with Parliamentarians, European Union bodies, the UN, funders, universities, public bodies, professional organisations, charities and provider organisations and community groups.   How to make sense of all that? On the whole I’ve taken to describing myself as being about achieving social change.

In terms of recent work, SocialCareFuture has formed a big part of my life since 2018.  I help convene it alongside Martin Routledge, Anna Severwright and Julie Stansfield and most of what we do is unpaid.  I’m really proud of what we’ve achieved and it’s great as a freelance to feel part of something bigger and ongoing.  I was paid as a consultant for some of the work I led on the research and guidance on how to change the story of social care to build public support to transform it.  I managed the overall project, co-commissioned the research with Equally Ours, reviewed the findings and co-authored the reports and guidance, which came out in April.  The vision is being widely adopted and the narrative can be seen finding its way into the discourse already which is great.  I’ve been doing various presentations about it for a variety of organisations, including NGOs, providers and councils who want to use it in different ways.  In September we’ll be rolling out workshops with Equally Ours, covering strategic communications and framing generally and with specific reference to social care.

I’ve also been part of a team, with Equally Ours and Savanta ComRes on a project for the Centre for Ageing Better on Reframing Ageing, advising at the earlier stages on what the data was telling us about how ageing was understood and talked about.  That was such a helpful piece of work to be doing alongside the Social Care Future work given the crossover.

My journey into work on framing and strategic communications began as Director of the Thomas Paine Initiative from 2012-18, a multi-donor strategic grantmaking initiative set up to support human rights advocates to become more effective at influencing public discourse and mindsets about human rights in the UK.  The initiative supported seminal research and the development and growth of new communications and convening architecture including Equally Ours, Each Other (formerly Rights Info) and the Human Rights Consortium Scotland.  It’s great then to have just been appointed to carry out scoping work for a major organisation in the justice field to explore how it might employ strategic communications to influence how the rule of law and access to justice are talked and thought about.

The rights of disabled people have been my main focus of both work and activism over the years and so it was fascinating to be asked to work alongside Professor Mark Priestly last summer to conduct a review of mandate of the UN Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas Aguilar, talking to people globally, inside and outside the UN system to gather their views.

I’ve also been leading two studies by European Disability Experts for the European Commission, one on the impact of the Covid-19 pandemic and the responses of government’s across Europe on the rights of disabled people, the other on whether digitalisation and digital transformation is proving to be disability-inclusive. I previously worked with EDE’s predecessor, ANED, on a European-wide study into progress on the transition from institutional care to independent living.

Digital technology is a growing theme in my work.  As well as the EDE study, I’ve been working with the Human Rights Centre at the University of Essex to explore the human rights implications of introducing new and emerging technologies into the field of care for older people.  I’ve also been working with In Control to explore the pluses and minuses of digital technology during the pandemic for people that draw on personalised care.

Finally, the rights of people living with dementia have become an increasing focus for me, both because my dad, who died last September, had Alzheimer’s but also because around the time in 2014 when he was diagnosed, I was contacted by Peter Mittler, an academic I had known years earlier for his work on inclusive education (and because he tutored my mum at the University of Manchester).  Peter was now living with Alzheimer’s and wanted to put dementia on the disability rights map and bring disability rights to the debates about people living with dementia.  It was great to work with Peter and through him to be made aware of the growing dementia self-advocacy movement.  This summer I’m going to do some work for the Dementia Care Action Network (DCAN) pulling together evidence to underpin the case for personalised care for people living with dementia.

In between times I find myself blogging, both via my own blog ‘Making Rights Make Sense’, via socialcarefuture, or as a guest blogger on other sites, spending far too much time on Twitter, torturing my family as a I try to learn how to play the Ukelele and trying desperately as only an almost 50 year old man can to stay fit by going out for a run every other day.

So there you have it – a flavour of what I do (and here’s some more if anyone is interested).  And hopefully an explanation as to why I struggle to explain it easily!

It’s time to remake the argument for disability equality

I guess paternalism never went away and only became more dominant as universalism lost its grip on much of our welfare state. People who have cause to draw on support are offered a Hobson’s choice of being cast as ‘a scrounger’ or one of ‘our most vulnerable citizens.’ 

While the disability rights movement that so inspired me wore t-shirts emblazoned with the slogan ‘piss on pity’, the social contract underpinning the welfare state attaches legitimacy to helplessness.  As a result, successive governments have felt able to advertise their commitment to equality of opportunity, social mobility or people fulfilling their potential, while cutting away the financial and practical support that provide some people with the means to get on in life.  The Covid-19 pandemic has consolidated such thinking, dividing us into the vulnerable that merit ‘protection’ versus those that should be exposed to risk. 

Meanwhile, many charities with considerable influence over how disability is understood and discussed, who in the 90s and 2000s felt compelled to adopt the language of equality and rights have slid back into their comfort zone.  Even if not using the words overtly, they implicitly endorse the idea that their beneficiaries are ‘vulnerable’, serving as it does their need to be recognised as the heroes in someone else’s story.  

The clock really does feel to have been turned back.  But can we reset it and chart a new path, without the polarised thinking of ‘welfare’ versus ‘equality’ but where we finally accept that we all draw on support at different stages to get on in our lives? 

The price of that support for disabled people should not be either accepting a form of permanent lockdown or enduring constant suspicion.  It’s time to remake the argument for disability equality.

Framing framing

I’ve sensed lately that how people understand the role of framing in our communications has got a bit confused, and that I’ve probably helped bring some of that confusion about.

What is framing? One of leading proponents of framing, Professor George Lakoff has said that:

‘Frames are mental structures that shape the way we see the world. In politics our frames shape our social policies and the institutions we form to carry out policies. To change our frames is to change all of this. Framing is social change.’ 

Hence how we talk about the issues we care about and the change we seek has a profound effect on what people understand, imagine and feel to be important, desirable or feasible. It pays therefore to pay attention to framing in the way we communicate. If we don’t, our messages can actually direct the way people think and feel away from the ideas, change or values that we need them to support, including by confirming the way our ‘opponents’ (or people who do not share our views and ideas) presently frame the issues.

Based on extensive evidence, one established rule of communicating persuasively is to match our articulation of current problems with a sense of viable solutions. When we fail to do this we risk fostering despondency and fatalism. While the sense of urgency and gravity we create might help foster a sense of ‘something must be done’ in the short term, a lack of possibility can quickly see that dissipate in a resigned ‘nothing can be done.’ Yet charity campaigns and communications still tend towards ‘catastophising’, absent any sense of the possibility for change.

The important point here though is that framing is not about just being positive. We can frame the way we talk about problems and an important part of doing so successfully is to talk about how things would look if the problems were fixed and the solutions that will take us there. Compare the following advertisements by the NSPCC, the first part of its famous ‘full stop campaign’, the second, Alfie the Astronaut, following framing research:

What’s notable about Alfie the Astronaut is the way it still brings into view child abuse, but it places the accent on recovery and NSPCC’s role therein, while using a universal frame of children having big dreams (and of recovery allowing them to dream again). It is a positive message, but it does not shy away from describing the problem. Does it make us care more, or less than watching the graphic violence depicted in the full stop ad? Does it leave us with a greater or lesser sense of agency? What feelings have the two videos left you with?

The point about framing is first and foremost to make sure that the stories people hear from us – through their own perception, understanding and feelings – match those we intended for them to hear, see, understand and feel, and crucially that they motivate people to do the things we want them to do, or to support. As well as giving a sense of possibility, clearly framing the causes is crucial too, otherwise we leave people to their default thinking, which often misattributes social problems to bad luck, lack of individual effort, or in the case of disability or people living with health conditions, to their bodies and minds alone, not the world in which we live.

The content we create based on framing still has to be creative, novel and engaging. It has to reach our audiences and move them to do something. It is competing for attention, whether we are trying to raise donations or advocate for policy reform. Framing is just one part of the process, not the process.

But it does challenge us to ask what it is we want people to believe, think, feel or do before we concern ourselves with the potentiality for clicks, shares, mentions, opportunities to see, sign ups and so on. As Anat Shenker Osorio has said, effective communication:

‘isn’t about saying what’s popular. It’s about making popular what needs to be said’

Where did you come from, where did you go?

This is my dad, dancing to Cotton Eyed Joe in a mill shop in Atherton, on August 1st 2020. We’d been trying on shoes. It was testing to say the least. But here is is laughing, engaging with the staff, dancing. Being my dad.

My dad had Alzheimer’s.  He died with Alzheimer’s.  His death certificate says he died *of* Alzheimer’s on 12 September 2020.  But he didn’t.  He died of acute kidney failure brought on by dehydration following an avoidably elongated spell in hospital last August, which initially came about because he’d stopped taking his anti-seizure medication, which happened because lockdown restrictions made him feel like he’d lost control over his life and so he rebelled in the face of people, including me, trying to force him to do so.  As his friend said at his funeral service ‘he was a stubborn Yorkshireman to the last’.  If dehydration was the price of being in control, of life, or death, then so be it. 

But he also died when he did because of decisions I made to place my mum’s life and her wellbeing above his.  I pushed her and created permission for her to move towards something she and my dad had absolutely not wanted – his move to a residential care home.  When he was admitted to hospital, I colluded with people there to keep him there until he could move to a care home, rather than back home.  Because that went on so – avoidably – long his health deteriorated.  And that’s why he died.  We’ll never know exactly why he became so unwell.  But if I’d taken a different decision – for him to be discharged home on the same day he was admitted – he’d have certainly lived longer. 

Why did I make that decision? I made it because otherwise my mum was going to collapse, physically and mentally, and because neither me or my sister could sustainably step in.  And I did it because the paid support we were able to access to support my dad and mum at home just wasn’t up to the task, despite the fact it was the most expensive available.  As already explained, my dad’s sense of autonomy was central to his wellbeing.  As was his sense of dignity. He was very self conscious about his body.  On the first day the homecare agency staff came, my mum had made clear my dad liked to dress himself but benefited from supervision as he would sometimes get a bit lost.  They ignored that and dressed him.  And that was the last time he would let them be involved in anything we might label ‘personal care’.  Imagine when you have even less or no money and no control at all.

And yet, our answer to that was for him to move to a care home, where he had nothing to anchor him in his own self.  We did not do this in his best interests, but in ours, feeling we had no other options. He wasn’t there long.  After 4 days he was back in hospital, dying.  We were with him right til the end – us his anchor in a foreign place. He ours.  And then he pulled his anchor up, and of course to a large degree ours too, and sailed away.

Yet this last week I’ve felt angry at the Alzheiner’s Society ‘cure social care’ campaign. 

Maybe it’s partly because it is too close to home.  There are bits in it that made me feel physical pain, like when she tries to hide her tears, and when she pleads with her husband to help her. The remoteness of the local council.  Maybe it’s because I was driven by a need or desire to ‘unburden’ my mum and myself.  Maybe it made me feel guilty that my deeds did not accord with my professed values. 

Possibly a bit of all of the above.  But ultimately it also made me angry for two reasons.  First, because the film offers only the so called ‘carers’ perspective and renders her husband an object.  While it might speak to the truth of many ‘carers’ experiences, it says nothing of that of people who themselves have dementia.  And this was carried on via messages on social media which said ‘a dementia diagnosis can claim more than one life’ with (authentic) quotes from carers about their sense of losing themselves, but implicitly the suggestion that the loss of life and living a life of the person with dementia was already priced in.  I’m shocked at this not only given the Society has recently published a new policy on personalised care, the very measure of which is to ensure the person is the protagonist in their own life story, but equally because it infers that the focus of the Society is curing dementia or merely finding a way to unburden would be carers.  The film provides no sense of the alternative, and I would guess that many watching will not have thought ‘they need some support so they can be together in the place they call home’ but ‘he should be in a home.’

Second, that the Society has evidently spent a huge amount of money on a campaign that repeats a narrative that has evidentially failed to work for at least 20 years – of a ‘broken social care system in crisis’.  If one look at the reliable Ipsos-Mori monthly issues index, social care has barely registered as an issue of concern for the public for several years, including all the way through the Covid-19 pandemic.  Sure, such messaging can generate coverage or secure signatures to a petition, but its impact on public salience does not positively shift the dial.  There is every reason to think it may do the opposite.

And so here I am, living with the guilt I feel about the decisions I made, yet knowing that I made them because community-based support – even when you have the money to pay – is shit.  Knowing that the ‘social care sector’ which is so keen for people to just wake up and see its value, is so often a shit employer and a provider of shit services that fail to meet people’s needs or aspirations.  Knowing that it is far too easy to collude in all of this because it helps us to feel less bad about decisions we have made about the people we love that go completely against what they wanted, or we believed we would uphold.  And just so terribly sad that the ‘leading dementia charity’ doesn’t seem able to accept any of this and will carry on promoting messages that entrench the thinking that stands in our way.

The Society is right about one thing – there is no ‘cure’ for dementia.  There’s no medical treatment of any significance for dementia either.  Maybe there will be one day, but not for anyone diagnosed with dementia today, or next year or in even 5 years time. For now, there is only striving to live your best life with dementia and to die as well as possible.  And for that to happen we have to massively up our game when it comes to care and support both for people who themselves have dementia and the people with who they share their lives.  I understand the temptation to place all the accent on how awful it can be.  I’ve seen it for myself.  But it hasn’t worked.  We have to balance our account of the challenges people face with a compelling vision of what can and should be, to give hope to people with dementia, those supporting them and to create the sense of possibility so evidently lacking among our politicians and across society. 

As Thomas Coombe’s and Anat Shenker Osorio point out:

“If we do not make the case for the world we want to see, who will?”

What we share

Between 2012-18 I led the Thomas Paine Initiative, a strategic grant-making initiative set up to support action to shift the tide of public opinion on human rights in the UK. This is how I came to find out about and see the potential of values-based framing and became aware of the wide range of organisations and movements that were exploring how it could help them to win social change. One of the last things I commissioned was a report and event called ‘More than Words’ written and curated by Alice Sachrajda and Lena Baumgartner and chaired by Ella Saltmarshe, which brought together people from diverse backgrounds connected through their interest in narrative change. Together we explored the shared infrastructure that such work might benefit from, such as expert advice and research, and also the potential for collaboration across hitherto separate initiatives at the level of underlying shared values. That report and event sparked various people to develop what has now become the Reset Narratives project, and I’m excited to be speaking at one of their online get together’s next week about the work I’ve since led to develop a new narrative on social care.

The power of shared values

In George Lakoff’s seminal book ‘Don’t think of an elephant – know your values and frame the debate’ he argues that there are two broad value-systems in operation in America, falling into what he calls a ‘strict father model’ or the ‘nurturing parent’. Shalom Schwartz divides these into ‘intrinsic’ – pro social values and ‘extrinsic’ pro-individual values. These underlying value systems shape our views on the world and hence the policies and ideas we are likely to support and who we vote for. The degree to which these values dominate how we think and feel varies across the population, and for significant numbers of us each can be ‘dialled’ up or down through strategically framed messages and initiatives. Lakoff argued that Republicans had historically been far more adept at doing this dialling as a political strategy, focusing energy on what he calls ‘strategic initiatives’. Trump’s ‘build the wall’ is a good example, dialling up people’s extrinsic security values, which in turn helped makes popular an authoritarian leader and his right wing policies. Democrats in the USA and social democrats across the world have tended to be less effective at this, still buying into the idea that voters think and behave rationally and out of self interest in their choices. Too often, progressives present policies in ways that dial up values that are odds with what they are striving to achieve and dial down those which they need, repelling voters, something we arguably saw at the recent UK election.

It is possible for progressives to do what the right does so well though. Common Cause hypothesised that the values that would give people cause to support action on conservation and on disabled people’s rights were shared. To test this, the attitudes of a group of people on both areas were measured to establish a baseline, before they were presented with messages about conservation that had been deliberately calibrated to dial up these pro-social values. Sure enough, when attitudes were explored after exposure to the messages they had positively shifted in relation to conservation and to the rights of disabled people, despite the latter not having been mentioned.

No cause is an island

What this evidence opens up is the potential of new collaborations and coalitions rooted in shared underlying values, rather than ‘issues’. This does not mean abandoning our focus on specific areas and issues – we will always need to do this. However, by being attentive to and aligning the underlying values embedded in our communications we can – as Lakoff suggested and Common Cause proved – help win progressive shifts across the board. We can also do so by showing solidarity with one another’s campaigns. For example, the Australian Conservation Foundation came out in support of Equal Marriage with this image below, helping contribute to building public support for change while strengthening the underlying values that support conservation ‘a world where compassion and respect are at the heart of our decisions. Where we value our planet, our communities and each other.’

So what values do we share?

#socialcarefuture’s headline vision is explicitly rooted in shared values, fusing self-directiion, solidarity and belonging:

It emphasises our interconnectedness with and interdependence on one another, positioning this as the means through which we live the lives we choose to live. This marks a departure from progressive accounts of social care reform which have tended to offer – even if unintended – a highly individuated and atomistic account of people achieving ‘independence’. I’m struck that this emphasis on connection and interdependence, as well as community and place, has much in common with values underpinning new narratives around climate and migration for example.

Unlike the messaging of many organisations in the space, the headline vision does not mention social care – concentrating instead on the life that everyone should be able to lead and has reason to value. Not does it introduce ‘groups’ of people that might ordinarily be associated with social care. This is in line with good framing practice, but it is also specifically to avoid the ‘othering’ that we found in default thinking about social care. In this sense it helps tee up ideas of a ‘larger us’, rather than ‘them and us’, again sharing much in common with other narrative change initiatives. In particular, we read about how the campaigns for equal marriage had proactively made such a shift, to great success.

Our vision goes on to offer a different account of how social care works when working well. Rather than a transactional service ‘delivered to’ people, it is about drawing together formal and informal support and relationships that people can draw on to live the lives they wish to to lead, with meaning, purpose and connection. The words and sequencing here are designed to position social care as a vehicle for a better life, rather than a destination or end point, as social care is so often framed. ‘Nurturing an ecosystem’ is one of a number of metaphors that tested well (perhaps surprisingly) via our research (the others being ‘weave a web’ and ‘acts as the glue that binds’). This part of our narrative continues with the fused values of self direction, solidarity and belonging. But I think it introduces something else, which is its implicit message about sustainability – tapping the renewable energy of our communities.

It’s about time

Looking beyond values specifically, a major challenge in communicating about social care is the distance many people instinctively feel between it and their lives. This is in part about the ‘othering’ referred to above, which makes it hard to enlist people’s support for something that appears irrelevant to them. But it also appears to be about time. That is, it is hard to communicate in a way that provokes people to imagine themselves having cause to need to draw on something in future. In fact, given the way social care is messaged today and the common mental associations peopel have, they would probably most likely not wish to imagine it at all.

I’m struck that that there may well be lessons from Ella Saltmarshe’s ‘Long Time Project.‘ While it is concerned with how to cultivate care about the impact of future climate among existing generations for those that will succeed it, I think its lessons may well be relevant to how we talk about social care, or age discrimination for example. Cracking that will help all of us understand better how to help put care for each other and our planet at the heart of how we live.

Working together

I’m looking forward to sharing #socialcarefuture’s work on 25 May (thanks Sophia Parker for clearing up that mystery). We are only going to turn the tide of populism, but mutual concern at the heart of our politics and build the future we all want through sharing our insights, our resources and our efforts.

Maybe Maslow just had a different view?

A few years ago I was doing some work with a diverse group of academics who wanted to conduct interdisciplinary research to underpin the ‘paradigm shift’ they believed was heralded by the United Nations Convention on the Rights of Persons with Disabilities. This imagined a transition from an individuated, atomistic concept of personhood and autonomy towards ideas of ‘shared personhood’ and ‘relational autonomy’. I spent a pleasant few days holed up in an old monastery by Lake Geneva discussing it with them and how we could pitch the funding application. There have been worse jobs. I almost felt I had self-actualised.

I’ve always remembered one of them saying that there was no such thing as ‘independence’ for humans, only ‘negotiated dependency’.

This came to mind when various people shared a blogpost recently that suggests ‘Maslow got it wrong’ in his (supposed) articulation of a hierarchy of needs. The blogpost appears to lay blame at Maslow’s door for normalising egocentric cultural and political norms such as the ‘American dream’ while marginalising sociocentric norms such as those practiced by the Blackfoot Nation with who Maslow had engaged with. These are said to place ‘community actualisation and perpetuity’ above ‘self actualisation’.

The article suggests that Maslow plagiarised the Blackfoot Nations ideas but that he ‘got it wrong’. This is an odd argument on a number of fronts. Firstly, while Maslow met elders from the Blackfoot Nation and learned from them there is no evidence he stole his ideas from them, not least because as people are pointing out, his ideas do not appear to correspond with theirs. Second, Maslow distilled many ideas into his theories of human motivation and may reasonably have come to a different viewpoint, one that reflected a diversity of human values and cultures. Third, he made clear that it was only a starting point that research should build upon. For example, in later work, just before his death, Maslow added ‘self-transendence’ – the capacity to show concern for ‘larger than self’ issues, such as concern for others. Maslow wrote that:

“The goal of identity [self-actualization] seems to be simultaneously an end-goal in itself, and also a transitional goal, a rite of passage, a step along the path to the transcendence of identity. … If our goal is the Eastern one of ego-transcendence and obliteration, of leaving behind self-consciousness and self-observation, … then it looks as if the best path to this goal for most people is via achieving identity, a strong real self, and via basic-need-gratification.”

And finally, Maslow was trying to describe human needs and motivations, not prescribe the social organisation necessary to accommodate or address them, though clearly they have had such an influence (including for example on social care, as I wrote here).

As for Maslow’s most famous theory, the first and most important thing to note is that while Maslow talked of some needs being ‘pre-potent’ – such as food, shelter and safety – he did not present needs and motivations as a hierarchal pyramid or as always sequential, but as having the potential to be interdependent and concurrent. This is a good piece by Complex Wales explaining how it is often interpretations of Maslow that have got it wrong, not the man himself. Nevertheless, his argument that as humans we are motivated to satisfy our base physiological needs as a priority above other needs seems fairly incontrovertible. As the anti-apartheid campaigner and judge Justice Albie Sachs has said of the inclusion of social and economic rights in the South African constitution ‘it would have been ironical indeed had the struggle against Apartheid resulted only in the right of citizens to curse the government freely with their last breath.’ Similarly, a community that places its perpetuity above the immediate safety and survival of its members is unlikely to be one that achieves perpetuity, other than through oppression or force.

Nevertheless, I think it’s valuable to nail the myth that ‘every human is an island’. Everyone’s freedom and ability to pursue his or her life goals rests on the strength of human cooperation. Indeed, one might contend that it is in the pursuit of them that human cooperation (and cooperation among other living organisms) has evolved. We are interdependent beings – in states of negotiated dependence. As people have pointed out, we rely on our ‘community’ (in the widest sense of our fellow humans and the planet) to ensure our survival and safety. There is no ‘self actualisation’ without the support of ‘community’. I don’t think Maslow contested that idea at all.

It is with respect to supposedly ‘higher order’ needs and motivations around which there appears to be most argument. In particular that Maslow is considered to have placed ‘self actualisation’ as the end point (though as I say in the introduction he latterly talked of ‘self transcendance’ as a later stage), while it is argued that the Blackfoot Nation believe people to be born ‘self actualised’ ‘as a spark of divinity, with a great purpose embedded in us’ Yet I’m struck that such a belief is not far removed from that expressed in Article 1 of the Universal Declaration of Human Rights when it says that ‘All human beings are born free and equal in dignity and rights.’ This is a principle drawn from and reflected in almost every world religion. That is to say, there is no real conflict between Maslow’s account of human needs and motivations and a belief that all human beings are born equal in dignity and worth – or with a ‘spark of divinity with great purpose embedded in us.’ That great purpose is still to be realised, and can only be realised if certain needs and motivations – or ‘substantive freedoms’ in the a theory of Amartya Sen – can be achieved.

The question then appears to centre on means and ends. That is, on what form of social and economic organisation is preferable for humans and for the planet and to what ends that ‘great purpose’ is committed. Is it to the ‘actualisation’ of the individual, or to that of his or her community and its ‘perpetuity’?

Whether our journey in life – or the purpose towards which we commit our great purpose – is towards ‘community actualisation’ or its ‘perpetuity’ or towards our own individual ends seems to me a question not of human psychology, but of morality and politics. That is to say, isn’t this really about competing stories and myths and how they shape our world for good or ill?

It also very much depends on what is meant by the loosely thrown around term ‘community.’ Do we mean the perpetuity of humankind and the planet? Do we mean our our fellow citizens in a country, or a town, or a hyper local neighbourhood? Do we mean people with who we share ancestry or ethnicity or traditions? Or do we just mean that we want people to behave less selfishly, acting on extrinsic pro-social values more than they do intrinsic pro-self values, with concern for others, the planet and future generations guiding their decisions and actions? And if we do, is that what we mean by ‘community actualisation and perpetuity’? Could it refer to the manner via which individuals self-actualise, pursuing their own life goals, but to the benefit of and without detriment to their fellow humans and to the planetary ecosystem? Article 1 of the UNDHR continues: ‘They (human beings) are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.’ Is this what we mean, or something more – self transcendence existing beyond self-actualisation, but dependent on it having been realised? Or do we just want self actualisation taken out of the equation altogether?

If we are elevating the actualisation and perpetuity of ‘the community’ where do we as individuals fit, especially if the community excludes or oppresses us? If the communities in which we are born are oppressive towards women, or disabled people, or towards ‘outsiders’ from other cultures, can this be justified in the name of ‘perpetuity’? How does a community perpetuate itself if it has experienced high levels of inward migration, bringing other stories and desires to perpetuate them? What if communities act in ways that place tradition above progress, or myths above science and empiricism to secure their perpetuity? How is power shared within them? What if they have been secured by force, or perpetuated through fear?

Where does individual freedom fit with this analysis? Is it derived through community, or subordinated to it? Does it exist at all? Does it even matter?

And what if a person just wants a different life, lying beyond the community into which they were born, through which they can fully become who they were destined to be?