The right words save lives. The wrong words kill.

Sky News is reporting that the deaths from coronavirus aren't so bad because most of the people "would have died anyway some time this year"… pic.twitter.com/12PdzyhYki

— Conor McCabe (@CMacCaba) March 28, 2020

I want to start this blogpost with a thought experiment. Imagine you read something on social media referring to ‘the elderly and vulnerable.’ What picture is at the front of your mind? Now read on.

The response to the coronavirus has explicitly delineated between those over the age of 70 and/or with ‘underlying conditions’ and the rest of the population. This is because the experience of other countries has shown that those who fall into these categories are more at risk of serious illness and face a higher probability of death should they become infected. Those falling into these categories have been encouraged to take greater steps than others to avoid physical contact, including through social isolation, to protect themselves and to help avert a runaway number of hospital admissions that might overwhelm the NHS, placing many more at risk.

Whether this is the right policy, whether it could have been avoided with earlier or different action and so on is something I don’t have the expertise to comment on. But what I do think is that the public messaging about the Coronavirus has not only been confusing, but through its language and framing, I fear it may have had a major backfire effect which led to the current lockdown and could contribute both to more deaths and to longer term negative ramifications.

To come back to the thought experiment, the ‘at risk’ groups have commonly been described as ‘the elderly and vulnerable.’ Now think of the mental picture you had, and then think of people you know in their 70s (which may include yourself). How many would fit that mental picture? I don’t know if any polling was or has been done, but I expect that initially a great number of people in the ‘at risk’ groups neither recognised themselves, nor were recognised by others as falling into the description ‘elderly and vulnerable.’ How many older people do you know who would describe themselves in this way? How many do you know who would feel such language undermined their identity and status, or their cherished independence, especially when the measures were described in terms of ‘being protected’ (shielding) which would involve withdrawing completely from everyday life into the home, when everyone else was facing far less draconian measures. Anecdotal evidence I saw suggested that for some of the target audience at least, such terminology may have either missed them altogether or led to them to psychologically distance themselves from the message, rather than heeding the advice to distance from others.

In sum, language rooted in paternalistic benevolence (shielding the elderly and vulnerable) leads both to othering (they must mean someone else), distancing (I’m going to argue they don’t mean me) and rejection of the advice (I don’t need protecting). But it also, in my view, leads to something else: the very opposite of protecting people.

The messaging has focused overwhelmingly on our propensity to acquire the virus, not on everyone’s huge propensity to transmit it. Even the messaging about washing our hands and social distancing has framed it as a self-protection measure, not a mutual protection measure.   This has in turn reinforced and been reinforced by the message that the at-risk groups are ‘the elderly and vulnerable’ with everyone else told only to anticipate a ‘mild’ illness. The implicit message is that younger people – including those over 70 who do not identify as ‘elderly or vulnerable’ – had much less to worry about. For them this was largely an inconvenience, albeit one with vast consequences for their future.

More disturbingly, and with potentially longer-term consequences, is the implicit downgrading of the human rights of older and disabled people and those with long term health conditions.  This is not to deny the necessity in such an emergency to make clinical decisions based on the best prospects of treatment leading to survival and recovery.  But the framing risks conflating prospects of survival, with the value to society of certain classes of people surviving.  As Dr Frances Ryan has pointed out, the subtext of messaging that says no one need worry about it unless they are ‘elderly or vulnerable’ is – in the words of Morrissey – ‘they were old and they would’ve died anyway.’ (the explicit message in the Sky News graphic above).  This in turn helps lays the ground for access to intubation to be denied on grounds of age alone as has it has been reported has happened in parts of Italy, or because of the existence of impairments or health conditions which do not necessarily predict prospects of survival, as in the NICE guidelines on who to admit to critical care.  It also helps pave the way for the duties of councils under the Care Act 2014 to be suspended:  an emergency measure to empower councils to manage fluctuations in demand and staffing, but one which does not suggest that the ‘elderly and vulnerable’ are being prioritised.  Of course some of these things are just a far more acute and transparent expression of things that already happen.

So how could this be talked about in a way that might motivate a better response?

Imagine if the messaging cast us all as a potential ‘Queen Elsa’ from Disney’s Frozen,  unaware of our newly acquired power to cause harm by touching things and each other? That is, imagine if it had focused on everyone’s capacity to make others ill, and rooted messaging about social distancing and washing hands in the responsibilities that flow from that fact. ‘Careless contact costs lives’ if you like.

Imagine it focused on our collective ability to bring the NHS to its knees and to endanger its staff through our carelessness, while tapping into our instinctive will to support it, as we demonstrated on Thursday night, applauding its workers ahead of the surge, and gave us a sense of collective purpose and agency to do so.

Imagine if rather than ‘protecting the elderly and vulnerable’ the message was about all of us protecting each other, or as Irish Prime Minister Leo Varadkar said ‘coming together by staying apart’.  Within that framing of mutual protection and individual agency we can emphasise the particular roles and responsibilities of different groups. Rather than ‘protecting the elderly and vulnerable’, we could talk about the great sacrifice that those over 70 and with underlying health conditions will make, in their own interests and in that of their fellow citizens, including NHS staff. Rather than minimising the personal risk of the virus to younger generations, we could talk up the risk they pose to others as transmitters, with social distancing framed as an obligation not to harm others and calling upon them to support the national effort to get through this together.   In sum, imagine a message of shared citizenship and of mutual obligation.

It is too early to know what impact this period will have upon attitudes to older and disabled people and those with long-term health conditions. Nevertheless, in the social and economic turmoil that is undoubtedly to come, we will need to be highly vigilant to maintain meaningful support for the equal dignity and worth of everyone, underscored by recognition of our common humanity.

We could start by recognising that language can literally be a matter of life and death and ensure that the disciplines of framing and strategic communications lie at the heart of our work to build and shape the post pandemic future.

 

 

Some thoughts on how to message about self isolation by people aged over 70

I’ve been writing about how I feel the messaging on physical distancing & social isolation among the over 70s may be having a backfire effect, or at very least not achieving the desired results, because it relies on highly paternalistic and condescending framing around ‘protecting the elderly & vulnerable’.  A colleague asked if I could suggest some alternative framing, so I’ve had a go here.    The crucial thing is that this message – or an adaptation of it – must come from widely respected people aged 70 and above & not from Ministers, or charities ‘for’ older people.  Welcome thoughts and comments.

‘We all have a role to play in minimising the harm that might otherwise be caused by Coronavirus. At the moment, the best way we can come together to do this is by staying apart from one another.

This is so that we can reduce the chances of passing the virus to one another. It is also to ensure that those who are bravely and tirelessly working to treat and take care of us if we become ill do not become overwhelmed by too many of us becoming unwell at the same time.

Those of us aged 70 and over have a particular role to play. Evidence from China, Italy, Spain and elsewhere shows that we are at greatest risk of becoming seriously ill should be contract the virus, and hence of needing to go to hospital.

So our biggest contribution right now is to do all we can to protect ourselves in order to stay well. That means going above and beyond what is being asked of younger generations, staying at home wherever possible and making every effort to maintain physical distance with others if we have reason to go out.

In return, younger generations will do all they can to support us through this period. If you need support contact xxxxx’ (relevant website, phone numbers etc to be added)

 

 

 

Careless talk costs lives

On Saturday evening, ITV’s Senior Political Editor Robert Peston ‘revealed’  that the government was to announce plans requiring everyone aged 70 and over to self-isolated ‘for up to four months.’ Unsurprisingly, the story spread like wildfire across the print, broadcast and social media, with headlines describing the measures as being one to ‘protect’ ‘the elderly’, ‘the vulnerable’ and ‘OAPs’.  Equally unsurprisingly, some people aged over 70 have begun to reject an idea that had been framed so poorly. Here’s a sample tweet from a long list:

‘I am 70 and have just played 4 sets of tennis, cycled 6 miles and yesterday ran a tough Parkrun in under 29 minutes…I work full time and go to meetings most days. Is the govt seriously suggesting ppl like me sit at home for 4 months?’

This tweet speaks to wider evidence both about the way ageing and older people are discussed and how we ourselves feel about ageing as we become older.  Specifically, many of us do not recognise ourselves in descriptive language that does not conform with our own self-identity or that of our peer group and hence imagine it refers to other people.  Equally, few of us will feel compelled to engage positively where we feel subject to prejudicial stereotypes.

Now, I’ve really no idea whether the risk to people over 70 is related to age, or to the fact that among people aged over 70 are a disproportionate number of people with underlying health conditions that place them at greater risk. Like the free bus pass, or winter fuel payment, this may be a policy that – especially given the urgency – can be more efficiently applied universally to all above a certain age than it can be targeted. I will take Simon Bottery’s lead here though and say clearly ‘But I don’t really know’ (#BIDRK).

Nevertheless, if we accept that there is a strong case for people aged over 70 to self-isolate because it is the most effective way to manage our way through this pandemic, then the framing of that case very clearly matters if people are to do what their government has asked them to.

I would therefore suggest that government – and ideally the media if it believes itself to have a beneficial role – plus others should avoid paternalistic language, both in their descriptions of those aged over 70, and in terms of the nature of the measure. That is to say, don’t frame this measure as ‘protecting the elderly and vulnerable.’   Instead, speak to the agency of people age over 70 and their unique role in helping the country as a whole to get through this. This is, after all, the real reason behind the proposed measure. Specifically, our collective role, born of our reciprocal obligations to one another, is to ‘flatten the curve’, or as Robert Peston’s ‘source’ advised “Everything is aimed at making sure the NHS is not overwhelmed, to save lives and to prevent hideous choices having to be made.”  The measure is not designed to protect only older people, it’s designed to protect us all by ensuring that those at greater risk (however bluntly defined) don’t become avoidably ill in great numbers, overwhelming the health service and leading to spiralling numbers of deaths, or long term health problems across the population.

Hence, rather than framing this as a protective measure for ‘vulnerable people’, perhaps social distancing & self-isolation among people over 70 can more powerfully be framed as a heroic sacrificial act in the interests of the community as a whole. Or as Harvey Slade cleverly summed things up this morning ‘this country needs you’ is a lot more inspiring’ than ‘this country needs you to stay out of the way.’

 

 

 

 

The best a man can… be

A really great blogpost by Rachel Coldicutt on stories about men taking care reminded me of this beautiful TV ad from Gillette (‘the best a man can get’):

In our brief dialogue about it, Rachel noted ‘in this time of not-touching, having the emotional skills to communicate things that are often unspoken is going to be so important and hard for a lot of people.’  I’ve been thinking about this lots since, with real sadness.

I don’t know how common an experience this is, but at some point during my childhood my dad and I stopped expressing our love for one another physically. It’s only been since his diagnosis with Alzheimers that this wall between us has started to come down.  This has been more and more common as verbal communication has become more difficult, but also because it just seems so intuitive to reach out, offer comfort and express love in physically.  When he was in hospital last year, holding his hand felt like the most natural thing in the world.  Kissing him goodbye and hugging him feels all of a sudden just…right.  Its not just these obvious expressions of love.  Helping him get dressed or go to the toilet, or eat just feels so lovely – a point of connection and intimacy between us that has been missing for much of my life, and something that feels naturally reciprocal.  And I’ve felt that, while my mum does much of this, he’s able to do it with my support in a way that allows him to maintain a sense of subjective dignity that I sense he feels he loses when he overly-relies on my mum.  That is to say, he doesn’t really want this stuff to come between him and his relationship with my mum, and why would he?

Of course I’m not doing this all the time – my mum is.  I live 200 miles away, with a young daughter in school, and only see them every 6-8 weeks or so.  I’m minded to think I would feel quite differently about it if it was something I was having to do every day all day.  But I’ve rarely seen these feelings expressed and interested to know how other men feel, so thought it valuable to write it down now, while I can…

..while I can, because it has occurred to me – as I’m sure it has others – that I may not now get to touch him or my mum for a very long time.

 

 

 

Toddlers, robots and being human in 2020

I’ve not really had time to read into this, so putting it out there based on personal experience and as a hunch, to be challenged, explored and tested….

…in sum, I think people are hard-wired to seek control over their own day to day lives.  When rendered an object, or left with a sense of limited power, people sometimes striveto exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into their agency and power by others in the name of ‘care’.  This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth.  I’m thinking in particular of people who have dementia – who are often deemed unable to exercise agency safely – but I think it probably applies to other people who require some degree of support.  This includes children of course, among whom such acts of protest or defiance are accepted as staging posts on the journey to adulthood, as their personhood and identity takes root.

I was first struck by this when watching ‘The toddlers who took on dementia’ on BBC 1 a year or two ago.  Several pre-schoolers spent a week hanging out with adults with dementia in a day centre, matched by their interests.  By the end of the week, the psychologists noted how the adults had, to the best they could, reasserted their adult responsibilities.  Remarkably, one woman, who had not uttered a word while at the day centre for 3 years, spoke fluidly to the children, giving them adult advice.

More recently, I was told of a visit made by a technology company to a care home in the West Country, to see how care home residents with dementia reacted to a humanoid type robot.  As with the toddlers, residents who had not been speaking to staff or other residents began to talk to the robot, and became very defensive when during the demonstration the company rep pushed the robot over to show its ability to get back up.   People’s sense of their own identity and agency appeared to be liberated when the power relationship shifted back in their favour or their own power and status was no longer threatened.

At the recent launch of A Better Way Network’s call to action, David Robinson spoke movingly about the importance of relationships in public services.  He told the story of his 93 year old dad’s period in hospital, where a ward sister doing her morning round had sat down on his bed, held his hand, addressed him by name and asked how he was and David noted how his dad visibly brightened.  He contrasted this with a nurse who later that morning came to take his dads blood pressure, which she did so without speaking to him, and how his spirit appeared to sink and later, apparently in protest, he refused to eat his lunch.

And I see it in my dad, who has Alzheimers and, despite needing an increasing level of support, deeply resents condescension and becomes positively uncooperative when sensing it.  And rightly so.

What’s the lesson here? Well, if there is anything in these observations, it’s that a care system that withdraws control from people, through coercion, or the imposition of rules and regimes, power play or condescending behaviour is likely to face people who withdraw their cooperation, to the extent that the exhibit behaviours that are (at least sometimes) misread as declining capacity or capability.  People such as Mark Neary have spoken movingly about this with respect to the Catch 22 faced by people with autism and/or learning disabilities in so called ‘assessment and treatment units’, where failures to comply with prescribed behaviours result in further coercion, restrictions on liberty and regimes and so on being imposed.  The downward spiral continues.

What if instead real attention was paid to relationships of power when it comes to care and support?  Not just personal budgets, or person-centred planning and so on, but in the everyday interactions people experience with others, where genuine respect for people’s identity, will and preferences provided the foundational principle of what good care and support is?  This isn’t just about ‘kindness’ – though kindness is crucial – it’s about a constant appraisal of where power lies in relationships of support.  Moreover, it’s about recognising that autonomy is relational: it rests upon the quality of our relationships with others; it does not exist in despite of them.  As a result autonomy can be ignited, nurtured and – at least to an extent – maintained by focusing on matters of power.

I think this is what Julie Stansfield and colleagues at In Control are getting at with their ‘Be Human’ initiative and I applaud them for it, because its too easy to hide behind rules and regulations and professional jargon when the only thing that really matters is to ‘Do unto others as you would have them do unto you’.  That means reversing the usual cycle of wrestling more and more power from those who require support, towards respecting, reaffirming and restoring it.

Happy New Year!

Neil

Postscript: I came across a journal article on autonomy and artificial intelligence for a report I’m writing which included the following:

” heightened sense of control in one’s life can have far-reaching implications for physical health and other physiological outcomes, in addition to the psychological consequences. In a classic experiment, nursing home residents who were told that they were responsible for their own well-being, and were assigned slightly more responsibility—given control over the care of a plant—showed significant improvement in alertness, active participation, and overall well-being [40]. In contrast, residents who were told that the staff was responsible for their well-being and who were only given the opportunity to tell the staff how the plant should be taken care of (without enacting those choices) did not show such improvements. This empirical finding suggests that feeling in control over one’s life can have important consequences: among individuals living in very similar conditions, those who perceive their environment as empowering and enact (rather than merely state) their preferences experience a higher quality of life.”

“a series of studies has found that threatening consumers’ belief in their own free will also have a variety of undesirable consequences such as reduced helpfulness and higher levels of aggression [6] and lower levels of self-control in intertemporal choices [52].These effects are driven by a weakened sense of personal responsibility, which provides a justification for behavior that would otherwise reflect negatively on the self.”

 

 

 

 

 

 

A ‘truly independent’ Equality and Human Rights Commission?

There’s been a lot of coverage and consternation today about Labour’s announcement that it would enact reforms to achieve a ‘truly independent’ Equality and Human Rights Commission.  Specifically, many have seen it as an attempt by Labour to discredit the EHRC as it investigates the Party with respect to allegations of anti-Semitism. The Jewish Chronicle quotes the Jewish Labour Movement spokesperson saying: “We’re through the looking-glass when Labour says it will create a ‘truly independent’ EHRC. There’s nothing wrong with the EHRC”

This evening, BBC Newsnight acquired a letter from June 2019 from the Commission’s Chief Executive Rebecca Hilsenrath to the Civil Service’s head of HR alleging that the Commission’s Chair David Isaac was declining to take public positions on issues such as the loss of EU Structural Funds, or the withdrawal of Shamima Begum’s citizenship.  It was suggested that the letter was leaked from within the Commission and its timing would indicate an intention of raising further questions about the independence of the organisation with respect to its inquiry into the Labour Party.

So far, so murky.  But I do think it’s worth bringing a bit of clarity to the question of the EHRC’s independence, and the fact that it has for much of the Commission’s life been seen as sub-optimal, including by the Commission itself, by the UN-sponsored accreditation body concerning the status and independence of national human rights institutions and – since 2010 – by the Labour Party.

The EHRC was established by Parliament via the Equality Act 2006 as a non departmental public body, enjoying the same legal status as its predecessors the Disability Rights Commission, the Equality Opportunities Commission and the Commission for Racial Equality.  This means that the Chair and Commissioners are appointed by Ministers, that the budget for the Commission is set by government, that the Secretary of State lays its annual report before Parliament and that the Commission has to abide by various rules governing the civil service.

The EHRC first sought accreditation by the snappily titled ‘International Coordinating Committee on National Human Rights Institutions (NHRI) sub-committee on accreditation (ICC SCA)’ in 2008.  This involves a complex and lengthy submission demonstrating how an NHRI seeking accreditation meets what are known as the Paris Principles.  The body can award, A, B or C status, which relate to the independence (from government and from other actors) and powers of the body in question.  The Commission was awarded ‘A’ status, but with various conditions attached that it – and government – were expected to address.  This included questions about the process by which the Chair and Commissioners were appointed, about how it laid its annual reports before Parliament and about how its budget was set by government – that is to say, the factors considered determinative of its independence.

Following a damning report by the Joint Parliamentary Committee on Human Rights (triggered by the resignation of a number of Commissioners over their disputes with the Commission’s then Chair Trevor Phillips) the ICC SCA reviewed the Commission’s ‘A’ status, ultimately reaffirming it but expressing once again its recommendations regarding independence.

After the 2010 General Election, the coalition Government began imposing dramatic cuts to the Commission’s budget & latterly sought to reform the Commission’s duties and powers as part of the ‘red-tape challenge’, a specific consultation on its duties and powers and then via the Enterprise and Regulatory Reform Bill 2013.  Even without legislative reform it withdrew funding for the Commission to provide its helpline and mediation services.  It was the Commission’s status as an NHRI and the interventions of various UN officials that acted as a bulwark against the government taking further steps to erode the Commission’s independence.  Indeed in 2014/15 the ICC SCA subjected the Commission to a further accreditation process and while reaffirming its ‘A’ status once again, made a series of recommendations for reform concerning appointments, reporting and financing linked to the Commission’s independence.

To come back to today’s allegations about the Labour Party, it’s important I think to note that the EHRC itself in 2011 proposed that

‘… the standard model of NDPB accountability is [not] a sufficiently outward and visible guarantee of independence from the government to be appropriate to a national human rights commission (or indeed the proposed single equality body, whether or not integrated with a human rights commission).’ ^[1]

‘On the whole we would tend to favour a form [of appointment] which requires a duty to consult Parliament on the appointment of commissioners as a guarantee of independence and democratic accountability, so long as this was a statutory duty.’ ^[2]

‘As a guarantee of independence, Parliament should be directly involved in the setting of any commission’s budget.’^[3]

In a briefing to Parliament in 2012 on the Enterprise and Regulatory Reform Bill the Commission noted:

“More recently, the JCHR has agreed the Belgrade Principles[1]. These principles relate to the relationship between NHRIs, such as the Commission, and national Parliaments. The principles were adopted by participants at an international expert seminar led by the UN Office of the High Commissioner for Human Rights in 2012.

The Belgrade Principles include several mechanisms for closer relationships between Parliaments and NHRIs, for example:

• ‘NHRIs should report directly to Parliament.’
• ‘Parliaments should develop a legal framework for the NHRI which secures its independence and its direct accountability to Parliament…’ and
• ‘Parliaments should invite the members of NHRIs to debate the Strategic Plan and / or its annual programme of activities in relation to the annual budget.’”

Labour Peers tabled amendments to the Bill with a view to securing an enhance role for Parliament with respect to the Commission, but these were ultimately unsuccessful.

I’ve not been able to track Labour’s position at the 2015 General Election with respect to the EHRC (if there was one at all) but I do know that conversations took place between external advocates and senior Labour shadow Ministers about the possibility of the Commission reporting to Parliament.  Crucially though, Labour’s 2017 manifesto included the following:

“A Labour government will enhance the powers and functions of the Equality and Human Rights Commission, making it truly independent‘ (my emphasis).

That is to say, Labour fought for greater independence for the EHRC back in 2012/13, in line with the EHRC and JCHR’s position and used the words ‘truly independent’ with respect to this policy in its 2017 manifesto.  It has not emerged in response to the Commission’s anti-Semitism investigation, though that it not to say reiterating that position might not now be being harnessed to undermine confidence in the Commission’s independence, and the Newsnight story does seem to suggest manoeuvres to those ends.

Crucially, in research I carried out with Professor Colm O’Cinneide into NHRIs and equality bodies in the EU in 2013, a distinction was drawn between ‘de jure’ and ‘de facto’ independence i.e. between the legally defined independence and powers of the body and whether the body conducted itself in a manner which demonstrated independence.  The process of appointing and re-appointing the Chair and Commissioners of the EHRC and the manner by which its budget is set undoubtedly provides opportunities for Ministers and officials to exert influence which can be construed as interfering with its independence.  People had a range of views about how ‘de facto’ independence might be measured.  For example some looked for evidence of a more outspoken, activist approach, intervening publicly with its views on key issues, whereas others saw a much more objective and balanced approach as being key, and don’t anticipate such bodies simply ‘speaking out’, but expect due processes of research, investigation, litigation and so on.  It’s a hard line to walk and for what its worth, my observation has been that the Commission has become generally more outspoken under the leadership of David Isaac and Rebecca Hilsenrath – certainly on issues like the impact of austerity on disabled people and the risks for equality and human rights of Brexit (and this may have come back to bite them).

So where does that leave us?  The Labour Party has an anti-Semitism problem that it has failed to address and the Commission is right to have launched a formal investigation.  A cleverer politician than Corbyn and his acolytes would welcome it as an opportunity to ‘clean out the stables.’ Attempts to discredit that investigation by calling into question the independence of the Commission are wrong and wrong-headed (and the EHRC needs to establish who is responsible for the leak and discipline them appropriately).  At the same time, the Labour Party is committing to enhance the Commission’s independence, in line with a policy it, the JCHR and EHRC have pursued since well before Corbyn became leader, which features in the 2017 Labour manifesto and which international best practice standards advocate.  Crucially, if implemented it would deny Labour and other governments the influence they will otherwise enjoy over what the Commission does with its powers in future.

Inferences aside, a ‘truly independent’ EHRC is long overdue.

 

 

 

 

 

 

The Public Administration Committee has also emphasised the importance of Parliamentary accountability and scrutiny of non-departmental public bodies.^[2]

[1] ‘Belgrade Principles’ on the Relationship between NHRIs and Parliaments, Office of the UN High Commissioner for Human Rights, see: http://www.theioi.org/downloads/frved/Belgrade%20Principles%20on%20the%20Relationship%20between%20NHRIs%20and%20Parliaments.pdf

^[2] Public Administration Committee, 5th report 7 January 2011, http://www.publications.parliament.uk/pa/cm201011/cmselect/cmpubadm/537/53702.htm

 

^[1] Sixth report, 2002-03, para 230.

^[2] Ibid para 223.

^[3] Ibid para 225.

 

 

 

 

 

 

 

Time for a relief from tax

In his seminal book ‘Don’t Think of an Elephant – know your values and frame the story’, Professor George Lakoff describes how in the US, Republicans have succeeded in framing the issue of taxation as “tax relief,” a metaphor that presents taxes as an affliction, and that predetermines who are the heroes – tax opponents – and villains – anyone collecting or proposing to raise them. Taxes are of course necessary if we are to have things like a military, schools, social security, hospitals… and social care. But making the case for public spending is made significantly more difficult when the frame is ‘tax relief.’

In the UK, ‘tax relief’ doesn’t seem that common a frame, but it is clear that ‘tax’ is commonly framed and thought of as a form of theft or punishment. Indeed, this is the very reason campaigners for increased public funding of social care have used it to convey the unfairness of current arrangements.   Were tax not widely thought about in this way, then phrases such as ‘death tax’, ‘care tax’ or ‘dementia tax’ would either be meaningless or could sound potentially attractive.

The problem of course, is that in using ‘tax’ in this way, campaigners are reinforcing the framing of tax as theft or punishment. And given the goal of these campaigners is, ultimately, increased public spending on social care, doing so is also, ultimately, undermining their own cause.

If we are to have the public services we need and want, then we are going to have to pay for them somehow, and pay more. So we need both to avoid feeding the dominant framing of taxation as theft or punishment and to set about– in collaboration with others – reframing how we talk about taxation and public spending itself, for example, as ‘pooling our resources’ or as ‘shared investment in the things that matter to all of us’.

 

 

It’s time to be pro-investment, not anti -austerity where disability rights is concerned

This afternoon (19 December 2018) MPs will debate the impact of austerity on disabled people’s rights in the UK.

One of the last things I did at the Equality and Human Rights Commission in 2011 was help prepare its submission to the Joint Parliamentary Committee on Human Rights inquiry into disabled people’s right to independent living.  A few months later, one of my first jobs as a freelance was to work with Jenny Morris as a specialist adviser to the Committee, reading the evidence submitted by disabled people and their organisations, getting to grips with the government’s obligations arising out of domestic law and the UN Convention on the Rights of Persons with Disabilities, preparing the Committee for evidence sessions with witnesses and drafting the final report.  Central to its findings and recommendations was this:

“Given the breadth of the current reforms, the Government should publish a unified assessment of the likely cumulative impact of the proposals on independent living, and set out any relevant mitigations through the Disability Strategy. The relevant strategies in the devolved administrations should also include such mitigation plans.”

In its response the government said:

“The ability to undertake cumulative analysis is limited because of the complexity of the modelling required and the amount of detailed information on individuals and families that is required to estimate the interactions of a large number of different policy changes.

The Disability Strategy will be accompanied by a process to allow monitoring of progress at national and local level and which will draw on the lived experiences of disabled people. It will be a living document that will continue to develop as progress is made, and to reflect changing circumstances and priorities. It will be for the devolved administrations to consider their approaches in the light of their devolved responsibilities.”

There have been numerous calls for such an assessment since, including by Pats Petition, the WOW campaign, the Centre for Welfare Reform and crucially by the United Nations Committee on the Rights of Persons with Disabilities.  The government has held the line that it is too complex to do.  In the meantime  The Equality and Human Rights Commission has commissioned the analysis, which shows that disabled people have and will continue to be disproportionately affected by reforms and spending cuts to 2022.

Of course the call for a ‘cumulative impact assessment’ is really a call for transparency and accountability.   That’s also why it hasn’t and won’t ever be delivered by this (or I’d wager any future) government.  Calls for it, and the government’s ongoing refusal to carry one out, may serve some limited political objectives of the Labour Party.  But I fear that it is ultimately a cul-de-sac in terms of advancing disability rights.

The negative impact of austerity has not been confined to its material effects on disabled people’s freedom and wellbeing.  It has also increasingly consumed the way disabled people’s lives are discussed in political debate – as a matter solely of public spending.  Hence, whether politicians are defending cuts, or arguing against them, disabled people’s lives are framed as a cost.  This is especially so where the accompanying rhetoric speaks not of the consequential limitations on equality and participation, but of ‘cruelty’ to the ‘most vulnerable members of our society’ – language reminscent of a pre-disability rights era where disabled people were regarded only as objects of charity or care.  The idea that the disability rights agenda is solely a question of public spending, and the framing of new movements as anti-austerity has also deeply polarised the debate – suggesting that the left should enjoy a monopoly on disability rights.  I’m sure there are many that will share that perspective, but UK political history tells a rather different story, with key developments – the shift towards inclusive education, away from instititonal care towards community care, the introduction of Disability Living Allowance, the Direct Payments Act, the first Disability Discrimination Act – being introduced by Conservative governments.

By objecting the Conservatives only to protest, not to any proposition, opportunities continue to be missed.  While the impact of austerity-led reforms and spending cuts continue to be felt – and felt acutely – the Prime Minister’s announcement at the Tory Conference that the philosophy of austerity was over presents at very least an opportunity to reset and reframe the terms of government policy on disability.  For example, disability organisations might campaign for policy leadership on disability to shift from DWP to the Women’s and Equalities Office, now housed in the Cabinet Office. While it would not have any immediate material effects, it would send an important signal of intent, to see disability as more than a question of welfare reform, and instead a matter of equality and rights.  This could help create political space for the Conservatives to define an agenda centred on freedom and opportunity, embracing education and support for children and young people, employment, public service reforms, accessible transport, goods and services and so on (well, we can only dream).

Moreover, in limiting action to protest, Labour is being let off the hook.  I do not hide my dislike for Corbyn’s Labour Party, but whomever was in charge, it is right to expect a Party now closer to forming the next government than ever before to be more than a protest movement.  The Party has listed a number of social security policies that it will ‘scrap’ – Universal Credit roll out, the bedroom tax, assessments for PIP and ESA – and many will welcome these promises. Yet it if does ‘scrap’ them, it will need to replace them with something else.  We know little if anything of its plans.  Ditto the long term funding of social care.  It seems intuitive to expect a Labour government to be more generous and compassionate, but policies in these areas are not forthcoming.  Moreover, there are real and serious concerns about the approach Labour will take in areas such as personalisation, which are not confined simply to levels of expenditure, that must be asked.   Beyond these plans to scrap things the Party has said that it will bring the UNCRPD into domestic law, yet its clear that it hasn’t given much thought to the real implications of this commitment.  If it has, then can disabled people can expect justiciable economic and social rights and an enforceable right to independent living?

Austerity continues to wreak huge damage on the lives of disabled people of all ages.  Its impact will be felt for generations to come.  It has set back an agenda that had been making huge strides forward until the financial crash of 2008.  But an anti-austerity agenda, focused on accountability for past actions, speaking only from and to the left and limited largely to protest rather than proposition about the future is unlikely to spark a way forward.

For that, the time has come to ditch austerity and anti-austerity alike and forge a cross Party agenda to be pro-investment in the life chances of disabled people.

 

 

 

 

 

 

 

 

 

 

 

We need to talk about not talking about care…

Just heading back from an interesting afternoon at the European Commission in Brussels, where the EU Agency for Fundamental Rights (FRA) was presenting the findings of its latest study into implementation of the right to independent living, focusing on practical steps to make the right a reality on the ground.   The FRA really should be congratulated for its leadership on independent living and I hope they will continue to give the issue priority, building on their work so far.

At the heart of the debate about independent living in Europe is the role of European Union funding and specifically the European Social and Investment Funds (ESIF).  In 2013, the regulations governing use of the funds for the first time included provisions (known as ‘ex ante conditionalities’ or in plain English ‘the things you have to show before you can spend the money’) that in theory prohibited use of EU funding to build, develop or maintain institutional care and which directed – for a limited number of EU member states – funds to be invested in the ‘transition from institutional to community based care’.  For the next funding period a different approach is under debate, which on my initial take appears more universal (it applies to every Member State) yet arguably less prescriptive.

I’ve picked up concerns about this new proposed approach from various European disability organisations, but will need to delve deeper to really understand the implications.  What I want to focus on is something else: language.

Last year I worked on a report for Community Living for Europe: Structural Funds Watch.  In ‘Opening up communities, closing down institutions’, we noted how, while the EU is committed to promoting implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities to ‘live independently and to be included in the community’, the language in the ESIF regulations concerns the ‘transition from institutional to community based care’ (my emphasis) and the report recommended that it should in future refer to ‘community based living.‘  Sadly, the draft regulations continue with ‘community based care’.

I believe this to be problematic for a number of reasons, which have implications not only for the debate at the EU level, but also debates in the UK around the future of social care.

Care is a different concept to independent living, and hence the language used does not correspond with the EU and Member States’ obligations arising from the UNCRPD

The language of care invokes ideas of people being ‘looked after’ rather than active citizenship.

It suggests a transactional, one-way service, rather than the idea of disabled people as part of the reciprocal, mutually supporting relationships to be found in well-functioning communities.

It does not challenge us to think about and invest in cultivating the conditions necessary for social inclusion, because implied within it is the idea that people are, by dent of requiring care, already excluded.  As a result, while it may achieve the geographic movement of people from tangible institutions into alternative settings, what may persist is what Alex Fox has termed ‘the invisible asylum’ – people live in the community but remain apart from the community.

It invites an approach whereby institutional care is reorganised, rather than eradicated or replaced.  For example, the shift from 100+bed social care or psychiatric institutions in remote locations to 20-30 bed ‘group homes’ with closer proximity to urban centres, or residential homes becoming ‘independent living centres’ via the addition of locks on resident’s doors.

Finally, it implies a cost rather than an investment.

None of which is to diminish the importance of caring for others as a value to be nurtured. But ‘care’ as conceived of here versus ‘care for others’ as a virtue are not the same thing.  Often the reality of ‘care’ suggests that there is a major deficit of care for others.  Certainly, it rarely embodies a belief that those requiring support have the equal right to an ordinary life.

This simple shift in language and focus from ‘care’ to ‘living’ would, in my view, lead to profound changes in policy, practice and the direction of resources.  We would still need to think about the way to organise what we call personal care.  But we would do so within a broader frame of thinking, including for example:

• How to give people real power to be the author of their own lives? For example, legal and financial power, peer support, information and advocacy
• How to stitch people into communities, to build connections and relational & reciprocal supports
• How to affect deep social attitudinal change, for example via fostering contact between disabled and non-disabled people, not only via media portrayal

Despite the corrosive effects of austerity, I’ve seen more and more examples of people and organisations striving for the above in the UK, albeit at the margins of practice not in the mainstream.  I’ve seen very little of this in the studies and reports generated about independent living in the EU, even less in terms of the expenditure of EU funds.

It will not change the world, but the simple of act of reframing the goal from ‘community based care’ to ‘community based living’ would, I believe, at least helpfully refocus our efforts.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Representing disabled people – what the UN disability rights committee has and has not said

On Friday 28 September I retweeted a link to the latest General Comment from the UN Committee on the Rights of Persons with Disabilities, on what constitutes ‘representation of persons with disabilities’ noting that:

“I’m sure lots of disability charities led by non disabled people will find their reasons to reject this, but a milestone statement by the UNCRPD Committee that only organisations led, directed & governed by disabled people can be regarded as representative.”

I imagined a few people might retweet and reply, but by Monday several hundred people had done so, all across the world, with heated debate about its implications. Here, for what it’s worth, are my more considered thoughts on what the Committee has said.

The Committee is giving guidance as to the meaning of ‘representative organisations’ as referenced in the obligations on State Parties in articles 4 (3) and 33 (3) of the Convention to ensure their involvement and participation in implementation and monitoring the obligations arising out of the Convention. Article 4(3) says:

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

In its new General Comment, the Committee is unequivocal that:

“organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. They can only be those that are led, directed and governed by persons with disabilities. A clear majority of their membership should be recruited among persons with disabilities themselves.”

What the Committee’s General Comment therefore does, very clearly, is distinguish between organisations of disabled people – representative organisations – and organisations for disabled people. So for example, in the UK, Scope, Mencap, Action on Hearing Loss, Leonard Cheshire and Shaw Trust would not meet the Committee’s definition of a ‘representative organisation’, however much they strive to represent the views and priorities of their beneficiaries, whereas Disability Rights UK, Inclusion London and Equal Lives would do. For others, such as RNIB or Learning Disability England, it is perhaps less clear.

It creates a clear expectation that States closely consult, involve and support disabled people’s organisations and it makes clear that it will not consider the consultation and involvement of non-representative organisation as a State having fulfilled its obligations.   ‘Close’ consultation and ‘active’ involvement indicate far more than obligatory, passive consultations. A few years ago I gave this presentation at a British Council event, exploring what such involvement means in practice:

Of major interest to DPOs will be the Committee’s position that:

“States parties should support organizations of persons with disabilities, through sufficient and independent funding and technical capacity-building, to be able to fulfil their roles under articles 4 (3) and 33 (3) and for autonomous participation in consultations”

The Equality and Human Rights Commission should be recognised here for its efforts to involve and support DPOs in engaging with the CRPD Committee’s examination of the UK and ongoing monitoring.  But the Committee’s position clearly lays responsibility with central government.

At the same time, this position does not preclude States from engaging and involving other organisations and taking on board their views, knowledge, insight and perspectives. Certainly, Article 33.3 of the Convention says ‘Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.’ (my emphasis) which clearly leaves the door open to non representative organisations being involved. This strikes me as a crucial point, both because there are many non-disability led organisations who, as allies, can make a vital contribution to advancing disability rights (such as generalist human rights organisations or anti-poverty campaign organisations for example) and because it may sometimes be beneficial to also engage organisations with extensive technical and market experience gained through providing services, or who have relationships with disabled people and their families through such service provision. However, the Committee’s position should be seen to call to an end any such non-representative organisation being regarded as ‘the voice’ of a group of disabled people and for them to be engaged with for what they are.

There are also a great many organisations providing valued services to disabled people who do not strive in any way to ‘represent’ disabled people. The General Comment can be regarded as a signal to them to more closely involve and consult disabled people, but it does not spell their illegitimacy as service providers or demand that only user led organisations win public funding to do so.

Quite reasonably, a number of parent advocates expressed concern at the content of my tweet.   The General Comment however helpfully clarifies (12 (d)):

“Organizations including both persons with disabilities and family members and/or relatives of persons with disabilities are pivotal in facilitating, promoting and securing the interests and supporting the autonomy and active participation of their relatives with intellectual disabilities, dementia and/or children with disabilities, when these groups of persons with disabilities are not represented by their own organizations. In such cases, these organizations should be included in consultation, decision-making and monitoring processes. The role of parents, relatives and caregivers in such organizations should be to assist and empower persons with disabilities to have a voice and take full control of their own lives. Such organizations should be actively working to promote and use supported decision-making processes to ensure that the right of persons with disabilities to be consulted and to express their own views are respected;”

That is to say, the Committee recognises and indeed celebrates the role of parent advocates, but qualifies this with the expectation that parents are genuinely pursuing the rights of their children, including through the application of supported, rather than substitute decision making (though as we know, that distinction is not clear cut in practice and the Committee itself has so far failed to give detailed guidance on its meaning).

The General Comment is an important and valuable milestone, restoring power to disabled people over their own lives alongside other key provisions in the Convention, such as on equal recognition before the law and political participation. At the same time, disabled people’s organisations are only as representative as the people who give their consent to be represented by them and despite some claims to the contrary no single organisation can lay claim to being the authentic voice of disabled people, in all their diversity of characteristics, views and opinion. With this recognition comes greater responsibility on DPOs to be open, inclusive and democratic, be open to collaboration with one another and prepared to negotiate and compromise.  Some DPOs also need to confront some of their own internal conflicts of interest, given many also combine advocacy with providing services under contract with or via grants from national and local government bodies.

Most of all, effective representation demands effective listening. As the ever-wise Jane (now Baroness) Campbell cautioned in 1997:

‘A political consciousness does not itself constitute a social movement and an awareness of the culture and dreams of its constituency and creating activities as a result are what the British Council of Disabled People constantly needs to engage in’