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?

Talking about independent living

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’ just as non-LGBT+ people have never talked about civil rights to same sex partnerships. And so just as the latter came to learn to talk instead about ‘marriage equality’ and to centre their messages not on rights, but on love, commitment and family, so it would be wise for those campaigning for independent living to find a way to speak to shared values and universal aspirations. That’s what the vision and narrative that has been developed by #socialcarefuture aims to do:

All of the elements of Article 19 of the UN Convention on the Rights of Persons with Disabilities are here – living in and being part of the community with choice and control over our lives. But it is written in a way that is wholly relatable and avoids the common trap of ‘othering’ by not addressing the message at or about older and disabled people at the outset, but to everyone.

Our narrative goes on to explain how ‘social care’ needs to work to make this vision real. This again speaks to Article 19 CRPD, rendering Article 19 (b) and (c) in service to Article 19 (a): people drawing on a range of supports and relationships to lead the life they want to lead, as part of their community.

We do talk about ‘social care’ in this work and we have thought a lot about this. I was confronted with a similar question when working on a project to try and shift public attitudes to human rights. Given people support the underlying principles, wouldn’t it be better to talk about and deepen support for those rather than use the increasingly toxic words ‘human rights’? The problem is, human rights is only ever then talked about in connection with terrorism or criminality. Similarly, while what we ultimately want may lie beyond ‘social care’ as it is traditionally conceived, our agenda is unlikely to get anywhere unless we redirect the resources and reform the law and practices associated with it. So we’ve used the language of social care to make it clear to our audience what it is we want to change and who needs to change.

Moreover, people will hopefully notice that we do not talk about people being ‘cared for’ but instead use the word ‘support’. This was a word that emerged without our prompting during the qualitative stages of our public audience research and offers the most consistent way to talk about what a reformed approach to ‘social care’ should do if aligned to independent living – as providing the means to the end of living the life people want to lead. However, it is still possible to use the word ‘care’ or ‘caring’ not as a verb, but as a solidarity value e.g. ‘in communities where we care about one another.’ One could also say ‘where we support one another’ or as we do ‘look out for one another’. This is important, as too often the word ‘independence’ triggers associations of self sufficiency and atomised lives, rather than being able to pursue our goals because of the strength of our social bonds.

This is a framework for communicating, not a script. But I feel it offers a way to talk about independent living that will resonate far more widely – just as marriage equality has done – and in dong so to open up the space for us to put forward ideas about law reform, funding, commissioning and practice change that have too often eluded us.

You can read the research and guidance here: https://socialcarefuture.blog/2021/04/20/by-changing-the-story-of-social-care-we-can-build-public-support-to-transform-it-for-future-generations-heres-how/

Anchored

‘It’s time to go now. Haul away your anchor, ‘tis our sailing time’ – Farewell Shanty

Before COVID-19 invited itself into our lives, I wrote about a road trip navigated by my dad, destination unknown to me in the driving seat because his dementia meant he struggled to describe it, but which it turned out had been absolutely clear to him: a vast custard slice at Barton Grange garden centre in Lancashire.  I’d gone up to spend time with my dad while my mum visited my sister in Scotland for the weekend.  We ate lots of things my mum wouldn’t let him eat.  We went to watch his beloved Sale Sharks.  We went to see his best friend from school who was in hospital.   These were the things that anchored my dad to his personhood and identity. I made the connection to a passage from a book ‘Holding One Another’ by Hilde Lindeman, drawn to my attention by Professor Gerard Quinn:

‘It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us 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…is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity…our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.’  

A few weeks later he had ended up in hospital with a suspected hernia, but in the process had a minor stroke, leading to a fortnight in hospital.  While we could be with him for most of that time, he suffered delirium and the whole experience precipitated a marked decline in his cognitive health.  He also began to have myoclonic seizures.    

Before this admission to hospital, my mum and dad had already started talking to Helen Sanderson, to explore how they could both keep living the lives they wanted to lead. The process had begun by exploring what mattered to them each and collectively in life, what challenges they were or might face in future in carrying on with those things and crucially what solutions there might be to help to do so.  That is to say, it focused on the things that ‘held them’ or as Professor Quinn referred to it, to the ‘scaffolding of the self’ – on those things that provide us all with meaning, purpose and a sense of security and belonging and which through doing so reaffirm who we are and our sense of worth. Following his return home, we decided together that they were going to need more support to do so, but as a first step we wanted to talk to the people already in their lives, so with support from Helen and Cath Barton at Community Circles we created a ‘circle’ of family, friends and neighbours.  As my mum has put it “Though there are sources of “official” help out there, nothing could compare with the experiences we enjoyed by having access to a community circle. Familiarity is key for those affected by Alzheimer’s…’.

And up until March 2020, though the impact of Alzheimer’s itself was definitely becoming more profound, the circle meant they could both continue to do things that mattered to them.  

And then came lockdown. 

Lockdown has 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.  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.  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 back in hospital, for 9 avoidable days.  And it finished him off altogether. My dad died in hospital on 12 September 2020.

What is absolutely clear from all this is that people’s experience of dementia and their ability to live as well as possible with the condition is mediated by their interactions with wider society.  This clearly opens up the possibility of a social model of dementia, yet I’m afraid that despite some attempts to do so in recent years, dementia remains dominated by an overwhelmingly medical model which primarily implicates the disease itself.

But there is hope.

Last week I attended an Alzheimer’s Society half day conference where they shared their emerging vision and policy for the future of social care.  It was pleasing to see they adopted #socialcarefuture’s vision:

While this vision is very much the product of a collective effort from members of our movement, in writing it I had my mum and dad very much at the front of my mind.  And what it says is that the goal of social care should be to help people to develop, maintain or repair the ‘scaffolding’ & to remain firmly anchored. 

And that is what ‘personalised care’ (which the Society says it wishes to promote, above narrowly drawn life and limb ‘personal care’) must mean too: not the narrow idea of delivering a transactional service in a more ‘customised’ or slightly kinder and more responsive way, but about attending to the things that anchor us in the world and in our own selves. It is about starting with the question ‘what matters to you’ and  it must cause us to see care and support not simply as a transactional service delivered ‘to’ people, but a the web of relationships and support that we draw on to live our lives in a way that maintains our wellbeing.

If the past, terrible year has taught us anything it is this: these are the things that provide us all with the anchor we need to live well. I fear that for many people living with dementia, that anchor is too often hauled up before they are actually ready to set sail.

An inclusive roadmap to freedom?

Labelled ‘our most vulnerable’ during the pandemic, one might be forgiven for imagining disabled people to be both helpless and without agency, and having been the focus of a major effort to offer protection and support over the past year.  But as always, this label conceals and misleads. 

As for ‘protecting the most vulnerable’, the overriding sense of many disabled people I know, have spoken to or listened to over the past year is one of abandonment. 

In the early stages, the confluence of the leaked NICE ‘clinical frailty scale’, the British Medical Associations ‘ethical guidelines’ and instances of people finding they were subject to Do Not Attempt Cardiovascular Resuscitation Notices without their having been consulted raised fears that disabled people were being abandoned by the NHS via some collective form of ‘upstream triage’.  And people were right to be afraid: six in ten of all people that have died from Covid-19 were disabled people. 

The inclusion of ‘Care Act Easement’s’ in the Coronavirus Act, the closing down of services, the cutting of support for adults and for families with disabled children, the lack of PPE in the early stages of the pandemic and the reported absence of any contact from social workers, left many feeling abandoned by councils.  Over 34,000 people living with dementia have died directly from Covid-19, a majority who were living in care homes.   In a recent Newsnight interview, one careworker revealed how Covid-19 killed 17 out of 31 residents of a care home in Walsall in a fortnight, with only two staff members left to cope as all others had gone off sick with the virus.  The measures taken to try to keep the virus out of care homes has returned them to being the ‘total institutions’ of the past, including preventing contact with relatives and friends inside or outside.  Many more will die before their time because of these measures, still in place.  One does not need to dispute the heroic efforts of doctors, nurses and poorly paid social care workers when suggesting that disabled people were and continued to be failed by the health and social care system during the pandemic.   Now people are facing increases in charging for services and, due to the recent budget, the prospect of further cuts, while the long-promised reform of social care funding appears to be slipping away once again.

There is though another crucial dimension to this sorry tale.  When people are abandoned they are left with two choices: sink or swim.  The label ‘the vulnerable’ obscures a crucial fact: in the absence of support and services and enduring severe disconnection from the wider world, countless people have exhibited huge strength, creativity, ingenuity and resourcefulness in order to survive, on their own or in collaboration with others.   Yet public narratives about health and social care during the pandemic never permit older and disabled people to be the heroes in their own story – only ever the beneficiaries of others’ sacrifices.  Such attitudes are rooted in the ‘soft bigotry of low expectations’ that hold so many disabled people back in life and which, when it comes to the crunch, allow society to write-off their lives altogether.

That’s also why we urgently need to look wider and deeper at how all this happened.

It is true that many people faced intrinsic risks of serious illness or death were they to acquire the virus, because of their age or a pre-existing condition.  And it’s true that the health and care system has failed many of those who were relying on it.  But it is equally true that many were far more exposed to infection because of extrinsic risks, related to their social and economic circumstances.  These are at risk of being overlooked at precisely the moment they need to be at the forefront of any debate about the future.  

Covid-19 has exposed the existing faultlines of inequality connected to disability, just as it has to ethnicity, or educational attainment, or occupation, or geography, and to the intersections between disability and these other dynamic factors shaping wellbeing and opportunity.   As the ONS put it in their recent statistical release:

‘no single factor explains the considerably raised risk of death involving COVID-among disabled people, and place of residence, socio-economic and geographical circumstances, and pre-existing health conditions all play a part; an important part of the raised risk is because disabled people are disproportionately exposed to a range of generally disadvantageous circumstances compared with non-disabled people….

….All the socio-economic and geographical circumstances and pre-existing health conditions considered made some difference to the risk for people with learning disabilities, but the largest effect was associated with living in a care home or other communal establishment.’

The government is presently consulting on a National Disability Strategy. If disabled people’s experience of Covid-19 and its underlying causes are to be taken seriously, then I suggest it sets three overarching goals & related action:

Eliminating poverty and narrowing inequality – reform of the social security system to unlock people from poverty, evidence-based strategy to tackle the employment gap, targeted action on qualifications and skills and to improve outcomes for disabled children, focused action on health inequalities, particularly as they affect people with learning disabilities

Implementing disabled people’s right to living independently and to be include in the community – a concerted effort through social care reform to fully transition from institutional care to sustainably funded community based support, a dedicated fund to support innovation in community based housing and support, investment in fostering connection, a genuine shift of power and control from councils/NHS to people and a renewed commitment to promoting accessible places, transport, new technology and services.

Tackling prejudice and discrimination – research to develop an evidence-based narrative and messages to shift public thinking, underlying attitudes and assumptions and build a multi-partner 10 year plan to shift mindsets.  Give EHRC to resources and political support it needs to promote and enforce equality law.

The key test of the strategy will ultimately be whether, in getting to grips with these persistent inequalities, it secures a credible, inclusive roadmap to freedom, or in failing to, presages for many a state of permanent lockdown.    We cannot stand by and allow the latter to happen.

Be there & be across everything

Last week we met with medical professionals from the hospital where my dad died to seek a better understanding of how he had come to be so ill, despite being – dementia aside – broadly well when admitted.  It was a helpful meeting, which we hope achieved our goal, of ensuring learning from our experience will influence how the hospital treats people living with dementia in future.  I am writing this purely because I think it may be helpful for other people in a similar situation to learn from our experience and to take steps to avoid loved ones becoming avoidably ill, or dying prematurely. 

Doctors don’t always know best

My first point precedes by dad’s admission to hospital.  Following a minor stroke in April 2019 my dad began to have Myoclonic seizures.  These are not like ‘fits’. Rather they involved him zoning out, and having muscle spasms, typically first thing in the morning.  If he was standing when they happened, they affected his balance, increasing his risk of falls.  When my mum first raised these with her GP he was completely dismissive.  I wrote to them and asked for him to be seen by another GP.  He was and then he was referred to neurology where a consultant determined that he was indeed experiencing these seizures, for which medication was prescribed which eliminated the seizures.  Unfortunately the anti-seizure medication dramatically affected his mood and so he was prescribed anti-depressants in addition.  Later, during lockdown he was less and less willing to take his medication, and the seizures returned, which was why he was admitted to hospital.

Be there

I think that, despite lockdown, we should have insisted on one of us being with him in the hospital as a reasonable adjustment under the Equality Act 2010.  When he was admitted in April 2019 our presence was vital, both to anchor him and see off delirium (though he still had it a bit) but also because you are the connective tissue and continuity between the doctors, nurses, occupational therapists, physios and social workers who, I’m afraid, are not working as a seamless team. Had we been able to be there I don’t think my dad’s denture would have been lost, something that was instrumental to his physical decline.  If you can’t be there in person, you need to find a way to be across everything, and again see yourself as the continuity person – take charge. But mostly, be there to be your loved one’s anchor.  Hospitals are disastrous for people living with dementia.  Familiar faces linking the person to the world they know are crucial.  Be there

Get the story straight

My dad became so unwell because he spent too long, disconnected from his life, in hospital.  Just prior to his admission we had, regretfully, begun to explore potential care homes and had found one, nearby, with a great reputation and able to accommodate my dad. After he was admitted to hospital, the care home indicated they were keen to offer him a place, pending an assessment from the hospital and a negative Covid test.  But then miscommunication and confusion took over.  For reasons we’re still unclear of, we learnt that the care home had been told my dad had had a stroke, and therefore felt unable to provide the care he needed.  We were told my dad needed discharge to an ‘EMI’ home.  This stands for “Elderly Mentally Infirm’, an anachronistic piece of terminology that is not in use by care homes, the Care Quality Commission or any websites for searching for care homes.   I spoke to the social worker about it and she said he needed a particular kind of home because of his wandering, and that the care home we had found (a dementia registered home) could not provide this.  When I asked what we needed to look for she became irritated and implied she had already spent too much time helping.  Despite this conversation beginning on the Wednesday, it wasn’t until late on the Friday afternoon she put me in touch with the Home Finder service, by which time they were winding down for the weekend.  Somewhat lost I emailed the care home we had initially found, to try to understand why they had felt unable to accommodate my dad in the hope this would inform our search.  This was when I discovered they’d been given inaccurate information and when I corrected it they agreed to look again after the weekend.  He eventually moved there, 9 days later, during which we were unable to see him.  The care home allowed my mum to and settle him in.  She was horrified.  She estimates he had lost a stone and a half, he could not stand unaided and had completely lost the ability to speak.  Again, the lesson here is to be absolutely on top of them – be the link person, the continuity and be as much of an irritant as you need to be. 

Seek health and care assessments right up the moment of discharge

When the day came for my dad to be discharged, he was assessed at 10 am and we were told he was going to move that day having been deemed fit enough to leave.  But the slot to be taken by ambulance to the care home didn’t come until after 5pm, 7 hours later.  He was not reassessed by a doctor before leaving, and there is no continuity of care from the hospital post discharge.  Moreover, we learned during the discussion that it was assumed by this stage that he was being discharged to a nursing home, not a care home, yet his care needs had not been reassessed and so he was discharged to the latter. This was Thursday evening.  On the following Tuesday he was taken to A&E with a serious kidney injury and was not initially expected to live through the night.  While they continued to treat him and he lived for another 11 days, the fact he was seen as ‘end of life’ meant we could be with him the whole time.  We saw nothing but respectful, dignifying care for my dad and for us that whole time.  But of course the difference was: we were there.

Check the death certificate

Finally, my dad’s death certificate says that he died as a result of Alzheimer’s disease and gives as a secondary factor a minor stroke he had in April 2019.  This certification is carried out independently of the doctors overseeing treatment and death, which seems a sensible precaution.  However, the cause of death in my dad’s case was kidney injury brought on by dehydration and infection.  While factors connected to his dementia may have precipitated this, such as unwillingness to drink or eat, or difficulties swallowing, the former might also be as a result of the quality of care, in hospital or outside.  While I understand there has been a push to ensure that dementia is recorded on death certificates, as a secondary cause of death, recording the primary cause seems to me important to avoid misattribution, and to ensure avoidable contributory factors are not overlooked.  If you have questions or concerns, ask.

We can’t turn back the clock, and we’ll probably never know what really expedited my dad’s death.  Like many living with dementia, lockdown had already had a damaging effect on his wellbeing and we had run out of road trying to find ways to support him well at home (in no small part because the expert support just isn’t available).  While we obviously missed him at Christmas, imagining him stuck in a care home, with us unable to see him, caused us to think that maybe he got a lucky escape. But at the same time, I’ve no doubt that avoidably being in hospital, alone, brought his life to a premature, abrupt end.  

If you want to avoid this, then my best advice is:

Challenge medical professionals and social workers. 

Be there. 

Be in top of everything.  

Leave no stone left unturned.   

Be an irritant. 

And don’t regret what you’ve not yet done.

Cider & peanuts

The smell of cider and peanuts on his breath as he kissed me goodnight.

This short post is going to be incoherent, because it’s about grief and grief is incoherent.  Grief is not continuous.  Grief is not whole. It comes in fragments.  Half memories meet sharp, all- consuming feelings.  They burst through the surface like geyzers.  And then just as quickly, they’re gone.  Some mist hangs in the air, but soon it clears. 

The smell of cider and peanuts on his breath as he kissed me goodnight. 

We’re told to imagine we’ll get over things.  But we just learn to live with them.  They become part of us.  And anyway, to get over losing someone demands that we get over ever having had them in our lives.  Why would we want that? As Jackie Kay says in her beautiful poem Darling “the dead don’t go until you do, loved ones.  The dead are still here, holding our hands”

The smell of cider and peanuts on his breath as he kissed me goodnight

Not long after my dad died, an old colleague – who had not long since lost his own dad, sent me a lovely message, in which he talked about Seamus Heaney’s poem Lightenings. The poem was prompted by the death of his own parents, in which Heaney likens losing them to being ‘unroofed’. I didn’t quite get it at the time, but this evening I was thinking about having nowhere in life to return to because home stops being home without the people we love being there. And it put me in mind of this Teenage Fanclub Song ‘Your love is the place where I come from’

The smell of cider and peanuts on his breath as he kissed me goodnight

Why am I writing this now? On Monday we had a conference call with the hospital where he died, to understand how he had become so ill so quickly. It was upsetting, but it also provided some release. What also prompted me was how, as I talked to someone on Zoom today, he looked away from the camera as he told me that his brother, who’d had Down’s Syndrome, had avoidably died last year. Telling people hurts so much and probably always will. But that’s ok.

Today, the sun came out. The daffodils are in bloom. Buds are growing on bare branches. The darkness of the past year feels like it’s lifting. And as I ran along the Thames in warm early morning sunshine, Nick Cave sang in my ears ‘this morning is amazing and so are you….in the morning sun”

The smell of cider and peanuts on his breath as he kissed me goodnight

Bring your family with you

It’s hugely welcome news that adults with learning disabilities will now be prioritised for the Covid-19 vaccination.  Official figures show that the risk of death for people with ‘a medically defined learning disability’ was 3.7 times greater for men and women compared with those without.  Adjusting for a range of factors, a raised risk of 1.7 times remained unexplained.[1]  Yet it has taken a Herculean effort for this to be recognised, only really changing when the DJ Jo Whiley began to raise the fact that she had been offered the vaccine while her sister, Fran, who has a learning disability had not.  Fran then acquired the virus and became seriously ill, but has thankfully survived.

As with other groups that have been disproportionately affected by the pandemic, such as people from black and minority ethnic communities or those of us living in poverty, people with learning disabilities already faced serious, persistent and entrenched inequalities, living on average for 20 years less than the general population.  While some people with learning disabilities do have ‘underlying health conditions’ and had been included in the ‘shielding’ list in recognition of this, the majority face increased risks because of their social and economic circumstances, including their living arrangements, poverty and isolation, lack of support from local councils, reliance on other people for support and so on. For example, ONS also reported that “All the socio-economic and geographical factors and pre-existing conditions considered (as placing disabled people at greater risk of dying from Covid-19) made some difference to the risk for people with learning disabilities. The largest effect was associated with living in a care home or other communal establishment”[2] These are the things that exposed people to Covid-19.  And while it is presently sacrilege to say anything bad about ‘our NHS’, we know full well that it is not immune to the prejudices that limit the lives of people with learning disabilities. Failures by the NHS in ensuring that people with learning disabilities are treated equally, including the failure to make reasonable adjustments that have led to avoidable ill health and deaths in the past, are well documented.  Yet these facts risk being completely overlooked at precisely the moment we have the opportunity to build awareness of them.

This is why, as clearly powerful as it was to have Jo Whiley raise the pressure and force government’s hand, it was such a shame that her high profile and widely shared interview on the Marr programme was not accompanied by any further interviews from others, including people with learning disabilities.  Asked why people with learning disabilities were more likely to die, she talked about the challenges of administering oxygen to her frightened and distressed sister and of how ‘security’ needed to be involved. She said ‘these people’ have ‘no comprehension’ of what is going on.  Asked what her message was about vaccinations, she replied that people with learning disabilities ‘were so precious and so vulnerable’ and that these were people who have ‘no way of helping themselves’ and are ‘wholly reliant on us’ to be protected.   

Of course, she was generalising from her own experience, and it was the fault of the editors to have positioned her as an expert and spokesperson for people with learning disabilities more generally.  But it will be the fault of organisations of and for people with learning disabilities not to harness this moment to ensure that the public aren’t left to imagine that people die from Covid because they are challenging to treat, or that our overriding obligation is to look after people who cannot look after themselves rather than respect people’s human rights, address our prejudices and undertake to root out discrimination and inequality.

Something that perhaps holds some organisations back from doing so is the continued tensions between the concerns of some parents of adults with learning disabilities, focused on protecting their adult children through a ‘custodian model’ of care, and the expectations created by self-advocates, public policy and the law for people to enjoy the right to live independently and to be included in the community.  I think this has arisen out of a failure to reconcile the two or to recognise the place of family, community and relationships as fundamental to all of our abilities to pursue the lives we want to lead.  Too often ‘independence’ is presented not a pursuing one’s own goals as member of the community, but as self-sufficient isolation from the wider community. Yet Article 19 of the UN Convention on the Rights of Persons with Disabilities on the right to live independently and to be included in the community clearly makes choice and control and being part of the community contingent. It directs our governments to ensure that people have choice and control over where and with who they live and over day to day life, through living and support options that do not isolate or segregate people from the wider community. 

The challenge, then, is to imagine the pursuit of human rights not as a journey made alone by people with learning disabilities away from their families, but as a journey made together with families and communities.  To those ends, I’m struck that lessons could be learned from the campaigns for Equal Marriage around the world, such as exemplified in this advert in the run up to Ireland’s Equal Marriage Referendum, which envelop messages of equality within a family frame:

This was a conscious shift.  The messaging of advocates for same sex partnerships had emphasised civil rights, which had served to reinforce othering and to differentiate ‘gay marriage’ from ‘straight marriage’.  By talking about ‘equal marriage’ and employing the frame of family, campaigners successfully shifted thinking from ‘rights’ to the outcomes of having those rights, of people being able to get married and their families being made stronger as a result. Moreover, by depicting families as allies in this struggle, equal marriage became emblematic of LGTB people and their families going on a broader journey together, with the message ‘we’re all going this way, aren’t you going to come with us?’   The referendum was won.

I guess what I’m saying is that rather than the rights of people with learning disabilities being seen as in tension with the idea of family, what is needed is to change the way people think about that relationship such that it becomes an emblem of inclusion, not of extended childhood and paternalism.


[1] https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/24januaryto20november2020

[2] Ibid

Take the pledge

It feels a bit sad to have to keep reminding people who work in a field that is overwhelmingly focused on supporting disabled people (and yes that includes all the older people supported too and people who support them without pay) of the slogan of the disabled people’s movement ‘nothing about us without us’. And yet in its language and behaviours, influential parts of the social care ‘sector’ (as it likes to be known) seem unmoved by this principle. At event after event focused on the future of social care, those who draw on it are either absent, or included not as an equal partner, but in a minority as the ‘voice of lived experience.’

Maybe this reflects something broader and deeper concerning the failure of social care to modernise, or to be replaced by something approximate to people’s rights and expectations, as elaborated in Article 19 of the UN Convention on the Rights of Persons with Disabilities – living independently and being included in the community. Despite the language of person centred care, the fine principles in the Care Act 2014 and nods to so-called ‘co-production, research I have led for #socialcarefuture finds that social care is overwhelmingly talked about and thought of as a transactional service that ‘looks after vulnerable people who cannot look after themselves’. Such thinking is emblematic of prejudicial stereotypes about older and disabled people:

These stereotypes play out as ‘the soft bigotry of low expectations’ or as the chair of the Disability Rights Commission’s mental health action group once described it to me ‘malevolent benevolence.’ This is the persistent ‘charity model’ of disabled and older people, the story of which never permits people to be the hero or heroine of their own story, but always the damsel in distress, rescued by the knight in shining armour.

If such attitudes are pervasive in how people think about and practice social care, that probably explains why people who draw on social care are not regarded as having anything to offer in debates about its future. To those ends, this week the great and good from the social care world met online for the Future Social Care Coalition summit on the future social care workforce. While others who spoke may have personal experience, of 26 speakers, only one – Clenton Farquharson – was there in the capacity of someone who presently draws on support to live his life.

I absolutely recognise what people working to support people to live their lives have endured during Covid-19 and the risks they have and continue to face. The pitiful terms and conditions of employment many endure is something that must change for those working in this area now and if people are to be attracted to such work in future. I can see why some imagine this focus to be both the way to leverage funding into social care via this years Comprehensive Spending Review and the moment to demand that change. Maybe they are right. But the truth is that such work continues to be accorded low value because the people who are supported and the support that is given is not valued. The fortunes of workers will not be changed without a major shift in perceptions about older and disabled people and the value of supporting them to live their lives as part of the wider community. That’s why talking about the heroism of care staff without even beginning to acknowledge what people – older people, disabled people, their families – have endured since March 2020 feeds these negative stereotypes. Doing it at and around an event to debate the future social care workforce where those most affected have barely any visibility or voice makes it part of the problem it professes to want to fix. One only needs to ask ‘whose workforce is this anyway?’ to reveal what the problem is. But such is the habit of talking about social care as ‘an industry’ or as ‘a sector’ before talking about the people’s whose lives it exists to support that one can see how easily it slips into such thinking. Those throwing their hands up in despair at why successive government’s including this one have not grasped the nettle on a long term plan might ask themselves this: do you think Marcus Rashford would have been successful had he made his focus funding school kitchens?

But this is not merely a question of politics, power and social attitudes. Currently, publicly funded social care is, by admission of its key actors and proponents, inadequate. Many not eligible for publicly funded care struggle to afford the care and support they need. Who fills these gaps? Who deploys their ingenuity and creativity to do so? Who demonstrates extraordinary resilience? Who are the innovators? Who are the visionaries? Who are the resourceful ones? Who might have the answers about how to create a sustainable future? Who knows their own identity, will and preferences and their own needs best of all?

Answer: the people not invited to take a seat around the table.

Enough is enough. Be an ally. Take the pledge

See the potential, not the badly framed fundraising ad

Last month Leonard Cheshire launched a new ‘campaign’ (actually a fundraising drive) which purported to be the start of an effort to ‘reclaim the narrative’ about disabled people in society.

In an article for EachOther. Dr Stephen Duckworth, now Chair of Leonard Cheshire wrote ‘Disabled people aren’t held back by their individual impairments, but by the institutional barriers within society. A new campaign from Leonard Cheshire is putting the focus squarely on equal rights to live, learn and earn’. Of course, Leonard Cheshire has a chequered history in the story of disability rights and continues to be a major provider of segregated living, learning, working and holidaying. Unlike Scope, there doesn’t appear to be any intention to ‘be the change’ by divesting itself of doing things that most disability rights campaigners would regard as entirely at odds with the UN Convention on the Rights of Persons with Disabilities. As for the ad itself, I am struck that it is paradoxical to promote a message of equality on the one hand, and then seek charitable donations on the other, given at the heart of the struggle for disability rights has been the rejection of ‘charity.’ But charities do what charities do and need money.

More specifically in the line ‘are you able to see the possibility, beyond our disability?’ I was immediately reminded of the ‘See the Person, Not the Disability’ adverts produced by the New Labour government in the late 1990s. Lots of disability activists disliked this campaign because it suggested that an impairment or health condition was de facto a deficit to be looked beyond and could never be either a neutral factor or positive attribute. Moreover it implied that it could somehow be separated from a person’s identity and character. For those who advocated disability pride it was just deeply offensive. Even if the intention is to advocate that people are judged on the content of their character, or their relevant skills and attributes and for prejudice and stereotypes to be left at the door, the language formula does the opposite, by saying loudly ‘disability is a problem’. This is a really good blogpost exploring this in more detail. The language used by Leonard Cheshire seems, in my view, to do this even more in asking people to ‘see the possibility beyond our disability.’

It also creates confusion about how we are defining disability. If we are advocating, as Duckworth does, the social model, then it makes no sense to ask people to ‘look beyond disability’ because to do so is to overlook the barriers that need to be removed to secure the conditions for people to ‘live, learn and work.’ If this formula were to make sense at all in support of the social model of disability, then it would ask people to ‘see the possibility, beyond our impairments.’ I sense some, such as Professor Tom Shakespeare, would deem this acceptable. But again, in my view it has the effect – in striving to negate an idea – of drawing attention to it. That is to say, it confirms prejudices that in having an impairment or health condition a person is intrinsically less capable, or less productive, for example.

It was surprising then to hear Ceri Burrell also celebrate this idea in this weeks otherwise powerful BBC2 documentary ‘Silenced; the hidden story of disabled Britain’. Talking about the legacy of the founder of the Paralympic Games, Sir Ludwig Guttmann, Ceri noted how he had encouraged people to ‘see the person, not the disability’.

But he didn’t. He encouraged disabled people and others to see their own worth and potential, with (not in despite of or ‘beyond’) their impairment or health condition, just as Vik Finkelstein, Mike Oliver, Jane Campbell, Andrew Lee, Gary Bourlet and countless others have done.

Until campaigners get that right, they are standing in the way of progress.

POSTSCRIPT

I’m advised by Professor Tom Shakespeare that this post mischaracterises Ludwig Guttman’s position. Tom advises that Guttman ‘talked about turning “an hopeless and helpless spinally paralysed individual into a taxpayer”. Individual change through rehabilitation. He transformed Spinal Cord Injury but not disability.’ In the BBC documentary, the focus was on Guttman’s role in establishing the Paralympic Games, and it was with reference to this that Ceri Burrell suggested he had encouraged the public to ‘see the person, not the disability’.

Protecting the NHS means protecting the key principle on which it was built

Back in April 2020 I helped write an open letter, directed at NHS England, the British Medical Association, Ministers and others which expressed concern about the risks to disabled people’s lives of policies and guidelines being considered, proposed or already enacted to deal with the prospect of healthcare rationing should the Covid-19 pandemic overwhelm the NHS.  These included:

The leaked ‘clinical frailty scale’ designed to be used to triage patients for acute care based on the extent of pre-existing conditions and their age;

The BMA’s ethical guidelines which envisaged shifting to a ‘utilitarian approach’ and which explicitly entertained making judgments about access to treatment based on social worth should the means to do so on clinical grounds be exhausted;

And early evidence of GPs issuing blanket Do Not Attempt Cardio Vascular Resuscitation (DNACR) notices to working age people with learning disabilities and others living in care homes. 

Over 2000 organisations and individuals signed the letter, which was covered on BBC News at Ten and which received a reassuring response from NHS England as well as prompting communications from NHSE about the proper use of DNACR notices.

In the end, hospitals were not overwhelmed in the way many had come to fear having witnessed the scenes in Italy and Spain in February.   Nevertheless, the first wave of the pandemic took a shocking toll on the lives of disabled people. By July, almost 6 in 10 of all who had died from Covid-19 were disabled people.  A team at Manchester University has estimated that 29,400 more care home residents, directly and indirectly attributable to COVID-19, died during the first 23-weeks of the pandemic than expected from historical trends, particularly affecting people living with dementia.  People with learning disabilities had a ‘death rate’ from Covid-19 up to 6 times higher than others.

Of course, we can attribute a great deal of this disproportionality to the age and underlying health conditions of people that died, both of which have been shown to weaken the immune response to the virus and which significantly increase the risk of serious illness and death. And while people bemoan the restrictions on their freedoms borne of the Tier system and lockdowns, many millions of our fellow citizens who are considered ‘clinically extremely vulnerable’ have been under effective house arrest for almost a year and will continue to be for many months to come because of these risks, with huge implications for their health, wellbeing and freedoms.

But these intrinsic risks are only part of the picture.  It exists also because disabled people of all ages are more likely to find themselves in situations of risk. 

Congregate models of assisted living, including care homes and group supported living, are to Covid-19 (and other contagion) what flammable cladding is to fire in tall buildings. The larger the assisted living facility the greater the likelihood of a large number of people dying from Covid-19.  This explains in particular why the pandemic has taken such a heavy toll on the lives of people with dementia.

Poverty plagues the lives of disabled people and the strong relationship between socio-economic status and the risk both of acquiring and dying from Covid-19 is well documented.  Moreover, it is likely that disabled people will endure disproportionate levels of poverty resulting from the pandemic,

Unequal access to healthcare predates Covid-19 and particularly effects people with learning disabilities.  Evidence has since emerged that DNACR notices were being issued without any consultation, sufficient to trigger an investigation by the Care Quality Commission.  

These are just a handful of the factors that have conspired to make Covid-19 more deadly for disabled people than for others in our society.   Each is emblematic of our failure to respect, protect and ensure the rights of disabled people. 

So is the rationing of healthcare.    

It might be argued that the reason the NHS was not overwhelmed in the first wave was down to the success of the ‘upstream triage’ which meant that so many disabled people, especially older disabled people, died outside of hospital, in care homes or other settings.  Some of this may be objectively justified both on clinical grounds and on grounds that hospitals can be both hugely damaging environments and not a chosen place to die on the proviso that these are decisions made on an individual case by case basis.  Yet it appears to have been a proactive policy both to discharge people to care homes, including people with Covid (or where their Covid status was not known) irrespective of the risk to others and to proactively pursue the avoidance of conveying people who became ill in care homes and other congregate settings to hospital.  In sum, people were placed at risk and then denied access to healthcare in order to ‘protect the NHS.’  Was the ‘utilitarian’ approach – rather than the human rights approach that supposedly underscores the NHS – actually in action in April and May of 2020, permitting direct discrimination on grounds of age, disability and health status? 

It seems highly probable that it is about to be.

It is obviously welcome now that people living in care homes, people with severe learning disabilities and others are now being prioritised for the vaccine and this provides some counter to any case of systemic discrimination.  Nevertheless, the current wave is already more deadly than the first and does look set to overwhelm the NHS imminently and before the vaccine can have any material effect.  We now face the prospect that those various decision-making tools and ethical guidelines that so concerned us last April will come into play as Doctors are faced with deciding who should or should not access acute care.  We know the pressure is there again for care homes to accept people discharged from hospital with Covid-19.  And it may already be the case that there is a policy of not conveying people living in care homes and other modes of assisted living to hospital to ‘protect the NHS’?  In the coming days and weeks vigilance and information-sharing is going to be vital.

As we opened our letter last April: ‘the NHS is built on the principle that we are each equal in dignity and worth.  It expresses our commitment to protect one another’s right to life and to health, no matter who we are.’   We cannot simultaneously claim to ‘protect the NHS’ while abandoning this principle.